A report providing data on Children with Special Health Care Needs, the impact of F2F HICs in helping families, and state by state highlights of F2F activities.

keeping families at the center of children s health care 2014 Activities Accomplishments of Family to Family Health Information Centers
. . . keeping families at the center of children   s health care  2014 Activities   Accomplishments of  Family-to-Family H...
CONTENTS Our Message 2 Children Youth with Special Health Care Needs 3 Family to Family Health Information Centers 4 Family Voices 7 The National Center for Family Professional Partnerships 8 State Specific F2F HIC information Information on each F2F HIC demonstrating their work for families Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Dist of Columbia Florida Georgia Hawai i Idaho 10 11 12 13 14 15 16 17 18 19 20 21 22 Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri 23 24 25 26 27 28 29 30 31 32 33 34 35 Montana 36 Nebraska 37 Nevada 38 New Hampshire 39 New Jersey 40 New Mexico 41 New York 42 North Carolina 43 North Dakota 44 Ohio 45 Oklahoma 46 Oregon 47 Pennsylvania 48 Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming 49 50 51 52 53 54 55 56 57 58 59 60 The Family At the Heart of Health Care 61 F2F State by State Charts Involvement with Partners Involvement in Specific Initiatives Sources of Funding Methods of Assistance Training 62 64 66 68 Family Voices Inc 3701 San Mateo Blvd NE Suite 103 Albuquerque NM 87110 Phone 505 872 4774 or 888 835 5669 Fax 505 872 4780 www fv ncfpp org www familyvoices org This report was developed with funding from the Health Resources and Services Administration HRSA Maternal and Child Health Bureau MCHB Division of Services for Children with Special Health Needs DSCSHN through cooperative agreement U40MC00149 1 June 12 2014
CONTENTS Our Message. .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  ....
OUR MESSAGE Family to Family Health Information Centers A Critical Resource One in five families in the U S has at least one child with special health care needs CSHCN needs that require health and related services of a type or amount beyond that required by children generally For many families the impact of their child s special health care needs can be significant increased out of pocket costs challenges in navigating multiple systems additional effort needed to provide and coordinate care reduced work hours or giving up work altogether as well as the emotional strain from such responsibilities Like their peers children with special needs deserve every opportunity to enjoy a happy and healthy childhood at home and in their communities Families equipped with reliable accurate information about ways to support their children s health education and social development can help them grow into productive adults as defined by their personal family and community cultural beliefs and values Family to Family Health Information Centers F2F HICs help families of children and youth with special health care needs deal with the challenges of caring for a child with special health care needs These centers are successful efficient and cost effective because they are staffed by parents who themselves have learned how to find and obtain financing how to navigate community services and how best to communicate and partner with providers Their family experience gives them empathy and ensures that they are a trusted source of help Formal family leadership training allows them to help other families solve problems Family to Family Health Information Centers provide information to help families Understand chronic problems that require ongoing care and have long term consequences Coordinate care from a variety of medical specialists and ancillary medical services therapies Learn care giving skills such as daily living adaptations and monitoring medical progress Identify and apply for financing programs offered by a myriad of federal state and private programs including understanding changes due to the Affordable Care Act ACA Gain advocacy and communication skills including skills to partner with their child s provider Cope with the emotional demands of caring for a CSHCN The effectiveness of Family to Family Health Information Centers in every state is enhanced by the Family Voices national network of support and mentorship coordinated by the Family Voices National Center for Family Professional Partnerships NCFPP Family Voices NCFPP helps F2F HICs to actively share tools strategies and approaches for helping individual families and for improving programs and policies from state to state across the country and provides training technical assistance and resources to enhance this peer support This booklet provides background information on CSHCN Family Voices and the NCFPP and highlights the work of each of the F2F HICs from which vulnerable families receive the critical support they need Thank you for taking the time to learn about these important activities Cristine Marchand Executive Director Family Voices 2 Nora Wells and Bev Baker Co Directors Family Voices National Center for Family Professional Partnerships FY2014 Activities Accomplishments of Family to Family Health Information Centers
OUR MESSAGE Family-to-Family Health Information Centers  A Critical Resource One in five families in the U.S. has at least...
ABOUT CSHCN The Maternal and Child Health Bureau MCHB defines children with special health care needs CSHCN as those children who have or are at risk for chronic physical developmental behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally is estimated that there are from 11 2 million 15 1 1 It to 14 6 million 19 8 2 children with special health care needs under the age of 18 in the United States More than 1 in 5 households with children in the United States have at least one child with special health care needs This translates into almost 9 million households nationally 1 About 60 of CSHCN experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition 1 Families of these more complex children are the group most frequently contacting F2F HICs for assistance CSHCN account for 40 or more of medical expenditures for children overall 1 Prevalence of Specific Difficulties and Parental Frustration in Accessing Community Based Services Any Di culty 34 1 Eligibility 50 10 8 Availability 11 2 17 8 30 14 9 Information 10 3 0 Frustration 0 9 8 0 34 1 27 6 20 9 0 Other Barriers 42 5 39 6 40 Appointment Cost Barriers of CSHCN whose Insurance is Inadequate by Type of Special Health Need 10 20 30 40 Managed by Rx meds Above routine needs use of services Rx meds AND service use Functional limitations CSHCN have complicated needs that are usually not isolated to a single doctor s office CSHCN and their families often require services from multiple providers as well as schools and other community based organizations CSHCN with more complex needs are those with functional limitations that make them unable to do the things most children the same age can do They are more likely to have insurance that doesn t cover needed services and or unreasonable out of pocket expenses and or problems seeing needed health providers 1 Brooke has Cohen syndrome which is a genetic disorder that affects her developmentally and physically Children with this disorder have moderate to severe intellectual disability and progressive vision issues Brooke also has the other symptoms that can come with this disorder such as low muscle tone neutropenia and difficulties with eating We have found it very difficult to provide the therapy our daughter needs I try to find work that allows me to still care for our daughter She is currently approved for long term care and we are praying that this program will help us be able to provide the therapies she needs a mother in Arizona National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 09 18 2012 from www childhealthdata org 1 National Survey of Children s Health NSCH 2011 12 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 05 01 2014 from www childhealthdata org 2 Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 3
ABOUT CSHCN The Maternal and Child Health Bureau  MCHB  defines children with special health care needs  CSHCN  as those c...
ABOUT F2F HICs Family to Family Health Information Centers F2F HICs are family staffed organizations that assist families of children and youth with special health care needs CSHCN and the professionals who serve them Each Family to Family Health Information Center is unique reflecting the needs and character of the community and state that it serves Organizational structure locations partnerships and specific initiatives may vary However all F2F HICs provide 1 Assistance to families and professionals in navigating health care systems 2 Information education training support and referral services 3 Outreach to underserved underrepresented populations 4 Guidance on health programs and policy 5 Collaboration with other F2F HICs family groups and professionals in efforts to improve services 6 Evaluation and outcome assessment and 7 Peer support based on common experiences and trusted information The success of F2F HICs and their critical value to families is highlighted in the following excerpt from a study conducted by the Research Triangle Institute Through their work to promote family centered culturally competent and linguistically appropriate care and medical homes for CSHCN Family to Family Health Information Centers are contributing to improvements in the quality of health care They are also playing an important role in reshaping local and state policies and practices regarding care for CSHCN By helping families to provide a consumer perspective on program and policy issues Family to Family Health Information Centers enable states to develop more effective ways to assist families with CSHCN The F2F HIC grant program was established in all States and the District of Columbia by authorization of the Family Opportunity Act part of the Deficit Reduction Act 2005 and funding has been extended by subsequent laws through the first half of federal FY2015 Grants are administered through a competitive grant process by the Health and Resources Service Administration Maternal and Child Health Bureau Division of Children with Special Health Care Needs Each F2F is awarded 95 700 annually Angela M Greene M S et al Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees Research Triangle Institute International 2006 4 FY2014 Activities Accomplishments of Family to Family Health Information Centers
ABOUT F2F HICs Family-to-Family Health Information Centers  F2F HICs  are family-staffed organizations that assist familie...
F2F HIC DATA PEOPLE SERVED Data on the following pages summarizes the activities and accomplishments of F2F HICs from June 2012 May 2013 Total Served Over 1 3 million individuals were provided information assisted or trained by the 51 F2F HICs across the country each state plus the District of Columbia This total represents 74 families and 26 professionals 349 699 Professionals 982 881 Families Families and professionals are served through many ways by phone email and in person at conferences and community fairs listservs and newsletters and through support groups and social media The F2F program taped a viewing of the Access for All television series about our collaboration with Title V to re design the CSHCN program in order to deliver more family friendly services This television show reaches approximately 30 000 individuals during its airtime run West Virginia F2F Director One to One Assistance and Training F2Fs provide free one to one consultation by phone email or in person For many families who are overwhelmed or feel over loaded with information this direct assistance from knowledgeable and sympathetic peer parents is extremely helpful Professionals often call the F2F requesting assistance or resources for a specific family In total F2Fs responded to over 280 thousand families and professionals seeking help F2F programs provide training on a number of different topics such as state health care financing programs the Affordable Care Act advocacy and family professional partnerships Over 177 thousand families and professionals participated in trainings offered by F2Fs across the country Trainings are done in person via webinar and online 109 422 Trained 208 119 Assisted 72 288 Assisted Families Professionals D has helped us break down what we thought were dead ends D has been a listening ear she has gotten services for our child and basically been a Godsend to us Anonymous Respondent to Virginia F2F survey Serving Diverse Populations F2Fs outreach to and serve families with CSHCN in their communities The chart shows average percentages of families served by race when the family self identifies About 10 of families served choose to self identify 67 776 Trained AIAN 2 Black 27 Pacific Islander 1 Some Asian Other Race 5 4 White 61 Of those families who did self identify 25 indicated they were Hispanic Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 5
F2F HIC DATA  PEOPLE SERVED Data on the following pages summarizes the activities and accomplishments of F2F HICs from Jun...
F2F HIC DATA INFORMATION FOCUS RESULTS F2F HICs provide information most frequently in these focused areas Public Health Care Financing accessing ACA Medicaid SCHIP Title V SSI other public health programs Family Support seeking obtaining and or providing family support such as family to family peer to peer or sibling support Communicating with providers improving the quality of the family provider relationship Care Coordination understanding roles of multiple providers facilitating communication Advancing Knowledge providing information or identifying opportunities to develop family leadership skills Disability Awareness discussing abilities disabilities discrimination attitudinal barriers civil rights School based financing working with schools regarding financing health related services Cultural Competence understanding or promoting the family perspective of all cultural linguistic populations Schools resolving school issues other than financing Systems Involvement providing information and mentoring on involvement at a systems level The ultimate goal of F2F HICs is to improve the access equity quality integration and accountability of health care for families of CSHCN This is achieved by helping families to have the confidence to partner in decisionmaking and navigate services Data show that F2F HICs have been successful in impacting families in these areas 91 of families report that the assistance and training they received from the F2F has made them better able to partner in decision making better able to navigate services and more confident about getting the health care services their child needs Juanita Dominguez is a Spanish speaking mom to three daughters ranging in age from 3 to 17 Erika her middle child has spina bifida with secondary hydrocephalus and requires a wheelchair As Erika grew she became too heavy for her mother to carry and it was increasingly difficult to assist her getting in and out of their family van Juanita needed resources to have a ramp installed and was referred to Family Voices Colorado Ileana Perez a bilingual FV Colorado Family Navigator connected the Dominguez family to Variety Colorado a children s charity and successfully helped Juanita apply for the funding of a wheelchair ramp for their van Juanita shared that her experience with Ileana and Family Voices was Very fast very friendly There were no obstacles in getting the help we needed I am so grateful 6 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F HIC DATA  INFORMATION FOCUS   RESULTS F2F HICs provide information most frequently in these focused areas  Public Heal...
ABOUT FAMILY VOICES Family Voices was incorporated in 1992 to give families of children with special health care needs a strong united voice in discussions around health care reform Built on a legacy of family leadership that helped to develop Medicaid Home and Community Based Waivers influence hospital visiting policies organize peer support and impact special education and early intervention legislation as well as many other programs and policies Family Voices continues to be a powerful force in keeping families at the center of children s health care Family Voices Mission Family Voices aims to achieve family centered care for all children and youth with special health care needs and or disabilities Through our national grassroots network we provide families tools to make informed decisions advocate for improved public and private policies build partnerships among professionals and families and serve as a trusted resource on health care At the core of Family Voices are grassroots families supported by State Affiliated Organizations SAOs and Family toFamily Health Information Centers F2Fs This network and our partnerships with provider and policy groups allows us to bring a vibrant family perspective to multiple arenas important to improving quality health care for children Family Voices and the F2Fs Family Voices created the concepts and model to establish family run F2Fs and oversaw successful demonstration projects that were funded initially by the Robert Wood Johnson Foundation the federal Maternal and Child Health Bureau MCHB and the Center for Medicare and Medicaid Services CMS These original projects documented the enormous value of this family to family assistance A 2006 photo of Polly Arango a founder of Family Voices and her extended family Polly is in the 2nd to last row just to the left of center Her son Nick is in the front row on the left We all come from families Families are big small extended nuclear multi generational with one parent two parents and grandparents We live under one roof or many A family can be as temporary as a few weeks or as permanent as forever We become part of a family by birth adoption marriage or from a desire for mutual support As family members we nurture protect and influence each other Families have strengths that flow from individual members and from the family as a whole Each family is a culture unto itself with unique values and its own way of realizing dreams Together our families are the source of our rich cultural heritage and spiritual diversity Our families create neighborhoods communities states and nations Developed and adopted by the New Mexico Legislative Young Children s Continuum and New Mexico Coalition for Children June 1990 Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 7
ABOUT  FAMILY VOICES  Family Voices was incorporated in 1992 to give families of children with special health care needs a...
ABOUT FAMILY VOICES NCFPP Now in its 9th year Family Voices National Center for Family Professional Partnerships NCFPP project provides vital national leadership to both families and professionals around establishing effective family professional partnerships at all levels of children s health care a core element in achieving family centered care The NCFPP serves as the technical support provider for a network of F2Fs SAOs developing highly successful structures of support through information sharing resource development training capacity building and leadership development Regular communication takes place among members of this network through listservs conference calls webinars social media mentoring and an interactive website This extensive system of peer support has allowed fledging family leaders to learn from more experienced leaders and has spread promising practices from state to state Multiple topics are addressed during one to one technical assistance TA interactions The most frequently requested topics in FY2013 were family professional partnerships F2F HIC data tracking reporting and family leadership development With the new cooperative agreement awarded for FY2014 the NCFPP recognizes and addresses the complex current health care environment that family leaders and their partners face within their states and at the federal level The goals of the NCFPP currently focus on promoting proactive partnering among families service providers and policy makers in order to improve the quality of care for children and their families by Increasing the capacity of families and others to partner around full implementation of the Affordable Care Act Strengthening the primary care workforce through family professional learning opportunities and Improving access to quality care and innovation in the areas of family centered care cultural and linguistic competence and shared decision making The NCFPP accomplishes these goals through technical assistance training and collaboration with F2Fs SAOs and partners Examples of this work include Development of online train the trainer course on CulturallyCompetent Family Professional Partnership Webinar series on ABC s of Quality Improvement for family professional teams joint effort with NICHQ Documentation of family identified best practices in reaching culturally diversed and underserved families Work with the AAP Medical Home Implementation National Center on testing the Family Centered Care Assessment in pediatric practices Input of family perspectives to restructure the National Survey of Children with Special Health Care Needs National Survey of Children s Health Participation in the Genetic Alliance demonstration awards project aimed at improving access to genetics services and support Collaboration with the Centers for Disease Control and Prevention to educate families and providers on flu prevention and treatment Work with the National Center for Children s Vision Eye Health on the design and dissemination of educational materials regarding children s vision health A national meeting of family leaders focused on leadership development 8 FY2014 Activities Accomplishments of Family to Family Health Information Centers
ABOUT FAMILY VOICES NCFPP Now in its 9th year, Family Voices National Center for Family Professional Partnerships  NCFPP  ...
NCFPP DATA IMPACT Data summarizes the activities and accomplishments of the NCFPP from June 2012 May 2013 Impact on Work of F2Fs SAOs No Value Slight Value 16 3 Understanding implementing the ACA 6 1 Ensuring that family youth consumers partner in their individual care Much Value Moderate Value 44 9 28 0 Ensuring that family youth consumers 4 0 partner at program and policy levels 28 0 28 0 48 0 30 0 50 0 16 0 25 0 38 0 Improving quality of training to promote workforce development 2 0 18 4 28 6 0 32 0 42 0 16 7 Contributing to the development of 8 0 integrated systems of care for MCH 4 0 33 3 40 0 16 0 4 2 Contributing to implementation of core public health program functions 4 2 28 6 29 2 24 0 Supporting transitions 2 0 32 0 40 8 27 1 Promoting community based services that are easy for families to access 4 0 38 0 32 0 26 5 6 3 Promoting continuous screening 4 2 4 0 Incorporating cultural and linguistic competence 2 0 32 7 34 0 32 0 2 0 Promoting Medical Homes 2 0 Significant Value 20 34 0 28 6 40 60 22 4 80 100 The NCFPP has provided a wealth of information to our activities over the past year especially about the ACA Information has been used to enhance the state perspective and provide families with much needed clarity and direction There has also been great information with respect to Medical Home and working with tribal health in our state that has lent a clearer direction for supporting both families and professionals in our state anonymous F2F SAO staff Impact on Work of Professional Partners Strongly Agree Agree Useful to Their Work 70 0 30 0 Contributes to E ective Completion of Group Tasks Results in Measurable Impact 0 33 3 66 7 42 9 57 1 20 40 60 80 100 The relationship with NCFPP has been instrumental in cultivating projects and activities of mutual interest that further the patient centered piece of the medical home work that we undertake as a national center Additionally the NCFPP representative to our national center s advisory group brings a wealth of knowledge expertise and experience that we would not otherwise have This is a tremendous asset to the work of our national center anonymous professional partner Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 9
NCFPP DATA  IMPACT  Data summarizes the activities and accomplishments of the NCFPP from June, 2012 - May, 2013.  Impact o...
F2F Family Voices of Alabama A L A B A M A Family Voices of Alabama FV of AL had its beginnings in 1992 as a grassroots volunteer organization committed to speaking up about the needs of CSHCN in health care reform As the F2F in AL we provide information training technical assistance and peer support to families of CSHCN as well as those who serve them We mentor families via oneto one contact nurture collaboration between families and professionals and assist families to be better able to participate in systems building activities in their communities and states Throughout all of our activities we integrate the philosophy of Family Centered Care Family Professional Partnership and Cultural Competence HIGHLIGHT Partners in Care Summit The Partners in Care Summit PIC is a two day conference designed to bring together families of CSHCN youth and professionals serving CSHCN The first day is reserved for families and youth and focuses on leadership development as well as practical information requested by families There is time for networking and resource sharing The second day is attended by families youth and professionals all learning together CSHCN in AL1 200 367 children 17 8 57 685 children have inadequate insurance 45 083 children have conditions that consistently affect their activities 67 428 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 31 4 19 0 12 4 CSHCN without Adequate Insurance CSHCN with Adequate Insurance Session topics have included family engagement medical home development and transition to adult life for CSHCN with an emphasis on health care transitions There have also been sessions on timely topics of interest such as the Affordable Care Act and changes to the Medicaid program in Alabama CSHCN Overall For the past two years our F2F has partnered with Children s Rehabilitation Service state CSHCN Program and their D70 project State Implementation Grants for Systems of Services for CSHCN The additional funding that these partners have provided has allowed the F2F to support more families to participate in the Summit and to bring in more national speakers Attendance has grown from 100 in the first years to 150 years in the last two years FEEDBACK Professionals and families have consistently given the summit outstanding evaluations The evaluation asks if participants felt they have learned new skills or strategies that will help them promote better partnerships between families and professionals to make good health care decisions 93 report that they agree or strongly agree that they did learn at least one new skill or strategy Also of those participants who indicated an increase in knowledge and ability skills almost all indicated a 1 level increase a statistically significantly finding FY2013 F2F OUTREACH 2 Total Families Served 4 775 Total Professionals Served 1 750 Materials Disseminated 4 189 IMPACT Family Provider Communications 5 2 Somewhat Useful Families rate the usefulness of the assistance information resources received from the AL F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 17 5 27 8 Extremely Useful Useful 49 5 Very Useful CONTACT Family Voices of Alabama 1050 Government Street Mobile AL 36604 2404 Phone 877 771 FVOA 877 771 3862 Contact Susan Colburn susan colburn rehab alabama gov 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 10 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family Voices of Alabama A L A B A M A  Family Voices of Alabama  FV of AL  had its beginnings in 1992 as a grassroot...
F2F Stone Soup Group The F2F is a critical project of Stone Soup Group SSG a statewide nonprofit organization created in 1992 by parents of children and youth with disabilities health care providers and social workers who shared a common vision for interconnected collaborative family driven assistance for other families of children and youth with special needs Our name is a nod to the children s fable in which a village of people contributes to feed a hungry stranger and one another This spirit of collaboration and input of varied experience and knowledge is the philosophy behind the work we do at SSG Our services are available statewide to help families with medical disability mental health and special education issues and most are at no cost to families HIGHLIGHT Teen Friendship and Dating SSG has worked in collaboration with the University of Alaska Anchorage Center for Human Development and others to teach teens and young adults with intellectual and related developmental disabilities about building and maintaining healthy relationships Facilitated by staff group sessions focus on teaching participants new skills such as personal boundaries gender differences the dating process etc This is followed by a chaperoned community activity where participants work on applying these new skills To date a total of 25 participants have graduated and the response from families has been overwhelmingly positive Parents are relieved to have a structured safe environment for their child to explore these important health issues and participants are proud of their accomplishments A L A S K A CSHCN in AK1 19 916 children 10 9 7 109 children have inadequate insurance 5 067 children have conditions that consistently affect their activities 7 198 do not receive family centered care CSHCN Whose Conditions Cause Financial Problems for the Family 41 8 23 6 10 7 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family After our first group graduated a mom approached our booth while at an event She was ecstatic about the program and wanted to know if her daughter could attend again She said the program was exactly what she was looking for and told the following story Her daughter is a very beautiful girl and at first sight it is not obvious that she has a disability Because of this she has received a lot of unwanted attention that she did not know how to handle This was evident when a boy in the program began to repeatedly call her Staff worked with the girl to build her confidence and with the boy to help him understand the negative aspects of his behavior Both participants learned from the experience According to the mom peer to peer interaction where they can learn these skills and practice this communication in a safe way is what makes this program so unique and special IMPACT Family Provider Communications Families rate the usefulness of the assistance information resources received from the AK F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 5 9 Somewhat Useful 22 0 Useful 0 20 43 2 Very Useful 40 60 28 8 Extremely Useful 80 FY2013 F2F OUTREACH 2 Total Families Served 6 659 Total Professionals Served 2 150 Materials Disseminated 5 120 100 CONTACT Stone Soup Group 307 E Northern Lights Blvd 100 Anchorage AK 99503 Phone 877 786 7327 AK only or 907 561 3701 Website http www stonesoupgroup org Contact Amy Westfall amyw stonesoupgroup org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 11
F2F  Stone Soup Group The F2F is a critical project of Stone Soup Group  SSG , a statewide nonprofit organization created ...
F2F Raising Special Kids A R I Z O N A The Arizona Family to Family Health Information Center a project of Raising Special Kids is a parent run center that provides free confidential technical assistance to families raising CSHCN professionals and others Through this project and others we partner with health care providers state agencies programs for medical residents and student nurses and other community organizations Our goals are to promote understanding of the value of family centered culturally competent care so these principles are put into practice HIGHLIGHT Partners in Preparedness CSHCN in AZ1 241 067 children 13 9 84 777 children have inadequate insurance 70 074 children have conditions that consistently affect their activities 88 998 children do not receive family centered care Raising Special Kids has been participating in a statewide Emergency Preparedness workgroup called Partners in Preparedness addressing access and functional needs since 2012 Raising Special Kids role is to provide the perspective of families with children who have disabilities and complex medical needs There are currently 21 community partners in the workgroup We participated in the planning committee for the 2013 Statewide Partners in Preparedness Conference which 124 people attended including emergency management personnel public health staff seven Native American tribes and individuals and parents of children with disabilities As a result of our work the AZ Department of Emergency Management is forming a subcommittee to address the specific needs of children who are medically fragile Though the Partners in Preparedness workgroup we are participating in the Arizona Department of Emergency Management Arizona Disability Assessment Program IMPACT on a Family The health needs of Adilynn adopted daughter of Laurie and her husband have required multiple medical procedures and over a dozen specialists We have been hospitalized a total of four times and with every stay we would leave with more doctors tests and stress to come Laurie said We were bombarded with paperwork insurance issues and the feeling that we were drowning and couldn t catch up Following Adilynn s surgery Laurie received a call from Raising Special Kids They helped me cope with her new feeding tube and the best help of all was that I got pointed in the right direction on how to get Long Term Care set up Through Raising Special Kids Laurie was connected with another mom who also has a child with complex medical needs I could talk to someone who understands and someone who is a few steps ahead of where we were at the time I now know just how important Raising Special Kids is to those who have kids with special needs IMPACT Family Confidence 1 6 NotUseful 9 6 FY2013 F2F OUTREACH 2 Total Families Served 19 948 Total Professionals Served 5 297 Materials Disseminated 9 200 Trainings Conducted 202 Families rate the usefulness of the support information resources they received from the AZ F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 Somewhat Useful 28 8 Extremely Useful 33 6 Useful 26 4 Very Useful CONTACT Raising Special Kids 5025 E Washington St 204 Phoenix AZ 85034 Phone 602 242 4366 Toll Free 800 237 3007 Fax 602 242 4306 Website http www raisingspecialkids org Contact Vickie French vickief raisingspecialkids org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 12 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Raising Special Kids A R I Z O N A  The Arizona Family-to-Family Health Information Center, a project of Raising Spec...
F2F Arkansas Disability Coalition The Arkansas Disability Coalition ADC is a statewide organization that assists families and individuals with all types of disabilities providing health related support information resources and training We work to ensure that all Arkansas families of children or youth with any kind of disability or special health care need are empowered with the knowledge and assistance they require to make informed decisions that support their child or youth s health and development through advocating the value and power of partnerships between families health care professionals lawmakers and the community at large HIGHLIGHT Minority Outreach In this project designed to help Hispanic families of CSHCN in the Little Rock School District LRSD the AR F2F provided cultural competency training resource information and referral services around health to extend the family supports that two of the LRSD elementary schools could offer In the eight months this project has been active we have provided direct assistance to 67 families As a result of our work the school district has a better understanding of the Hispanic community in central Arkansas the relationship between the schools and Hispanic families has improved and Hispanic families are now more aware of available health resources and in a better position to act as self advocates We will now use this experience to inform a pilot project to develop a statewide minority outreach plan A R K A N S A S CSHCN in AR1 139 580 children 19 8 48 743 children have inadequate insurance 44 523 children have conditions that consistently affect their activities 52 323 children do not receive family centered care CSHCN Whose Conditions Cause Financial Problems for the Family 33 6 21 2 13 4 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family The AR F2F recently worked with a mom of an 8 year old child who had suffered with chest pains for months Fearing the high cost of medical services his parents had not taken their child to see a doctor We connected the family with AR Children s Hospital and the child received a complete check up The mother noted in our follow up call that she was very thankful for the F2F s involvement as she would never have taken the child to a hospital for fear of the bills associated with hospitals She was not aware that Children s Hospital had so many services that were available to her for free Her son is now in a 1 year care plan through AR Children s Hospital and she is very grateful Her son now has much less chest pain and their family is better equipped to deal with the challenges that he faces IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the AR F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 3 Not Useful 8 8 Some what 37 93 Useful 0 1 2 47 5 Useful Useful 20 40 31 3 Very Useful 58 62 Very Useful 60 80 11 3 Extremely Useful 100 FY2013 F2F OUTREACH 2 Total Families Served 5 487 Total Professionals Served 241 Materials Disseminated 2 213 CONTACT Arkansas Disability Coalition 1501 N University Avenue Suite 268 Little Rock AR 72207 Phone 501 614 7020 800 223 1330 Fax 501 614 9082 Website http www adcpti org Contact Bryan Cozart bryan cozart adcpti org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 13
F2F  Arkansas Disability Coalition The Arkansas Disability Coalition  ADC  is a statewide organization that assists famili...
C A L I F O R N I A F2F Family Voices of California Family Voices of California FVCA is a statewide collaborative of locallybased parent run centers working to ensure quality health care for children and youth with special health care needs FVCA provides information and a forum for parent centers and families to advocate for improved public and private policies builds partnerships between professionals and families and serves as a vital resource on health care HIGHLIGHT Project Leadership and Health Summit CSHCN in CA1 997 157 children 10 6 353 181 children have inadequate insurance 289 340 children have conditions that consistently affect their activities 379 891 do not receive familycentered care FVCA works to increase the number of family members with CSHCN who are prepared and supported to become advocates for health care policy and systems improvements through its Project Leadership training Recent graduates of this program participated in the 2014 FVCA Health Summit This Summit provided information and education to 133 participants 64 parents or adult family members 11 youth and 58 professionals about key components benefits and concerns related to the California Children s Services CCS Title V program how to access behavioral services through schools Medi Cal and private insurance oversight and monitoring of Medi Cal Managed Care after the transition of Healthy Families to Medi Cal 98 of Summit participants agreed or strongly agreed that they learned new information about policy issues that affect families of CSHCN IMPACT on a Family Two parents from one family shared their thoughts and experiences after they graduated from the FVCA Project Leadership training program and attended the Health Summit and Legislative Day Emelyn the mom wrote Project Leadership training has allowed me to further build my confidence as an advocate This training has given me the tools information and necessary leadership skills to further my advocacy voice for Mia my daughter and other families I am very interested in expanding this training for other families to find their voices in advocating for their children s needs most especially reaching out and training for the Latino Hispanic community The father Daniel said Progressively I have taken on the role of advocate for the needs and resources for our daughter Mia I have had no mentor or guide None of my other friends or family members who are also dads could relate to what I was going through as a father not even my own father So I tried my best despite not having someone to mimic my behavior after or show me where when and how to hone and harness my energy and to what degree to do it That s where Project Leadership comes in I am beyond thankful and blessed to have been part of a workshop that has guided me and empowered me and has shown me where when and how to harness my despair into a catalyst of advocacy for my daughter IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the CA F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2
C A L I F O R N I A  F2F  Family Voices of California Family Voices of California  FVCA  is a statewide collaborative of l...
F2F Family Voices Colorado Family Voices Colorado is a collaborative of Family Driven Organizations and Family Navigators that work with families health care providers other professionals and volunteers across our state to improve access to and quality of health care for young people with special needs We help with application and enrollment for Medicaid and CHIP understanding health insurance options through the new marketplace Connect for Health Colorado undertaking an appeal processes for public or private insurance developing a culturally competent medical home approach to care in the primary care office or navigating complex service systems such as disability SSI education mental health HIGHLIGHT Collaboration of Colorado s Family Driven Organizations Collaborating with other Individual Family Navigators Family Driven Organizations has helped us to streamline outreach assistance service delivery and advocacy for the families we serve Due to a very fragmented system in Colorado this type of collaborative approach provides families with coordinated help To date our 10 different Family Navigators FamilyDriven Organizations have assisted over 5 000 parents and professionals on a variety of topics related to their CSHCN In addition every Family Navigator Family Driven Organization works on specific projects to support the collaborative such as the redesign of the Colorado Resource Directory providing access to over 2 750 resources C O L O R A D O CSHCN in CO1 167 524 children 13 7 70 432 children have inadequate insurance 43 543 children have conditions that consistently affect their activities 55 051 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 46 1 29 2 13 0 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family Family Voices Colorado assisted a family who was being pressured to bring their daughter home from a residential treatment center Emma had intense mental health needs as well as developmental disabilities Family Voices helped the family work with the appropriate institutional representatives within the Medicaid Managed Care Ombudsman Program Department of Health Care Policy and Financing Behavioral Health Institute and the residential treatment center to complete appropriate evaluations They continued to help the family through a negotiation process of securing documentation from Emma s care providers and psychiatrist to convince the funding agencies of the medical necessity of continuing her placement without having to reevaluate the situation on a monthly basis Emma s Mom has taken the lessons she learned from working with Family Voices to become an advocate for other families facing similar situations IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the CO F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 2 2 9 NotUseful 26 5 Extremely Useful 20 6 Somewhat Useful FY2013 F2F OUTREACH 2 Total Families Served 10 656 Total Professionals Served 3 733 Materials Disseminated 8 705 Trainings 56 11 8 Useful 38 2 Very Useful CONTACT Family Voices Colorado 13199 East Montview Blvd Suite 200 Aurora CO 80045 Phone Phone 303 733 3000 Toll Free 800 881 8272 Website http www familyvoicesco org Contact Dina Castro dina familyvoicesco org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 15
F2F  Family Voices Colorado Family Voices Colorado is a collaborative of Family-Driven Organizations and Family Navigators...
F2F PATH Parent to Parent Family Voices of CT C O N N E C T I C U T PATH is a network of families providing informational and emotional support to others who have a child with developmental or health related needs PATH reaches out to help strengthen families coping with similar situations across the state of Connecticut and works with the organizations that serve these families to reduce isolation empower families as advocates for their children and reaffirm their values as parents and caregivers HIGHLIGHT State Implementation Grant for Autism other Developmental Disabilities CSHCN in CT1 139 453 children 17 3 52 051 children have inadequate insurance 40 019 children have conditions that consistently affect their activities 44 632 do not receive familycentered care CSHCN Whose Conditions Cause PATH Family Voices of CT FVCT works with multiple partners in Financial Problems for the Family a Collaborative to Improve Autism Services with a goal of enhancing Connecticut s existing infrastructure supporting children and youth with autism spectrum disorder ASD and other developmental disabilities 30 8 Project activities include providing one to one parent to parent support and training to families caregivers of children and youth with autism and 18 8 training to professionals and clinicians responsible for screening families of 10 4 diverse populations when English is not their primary language and when they have different cultural views on child development Under this project CSHCN CSHCN without with to date PATH FVCT has provided support and training to 97 parents and CSHCN Adequate Adequate Overall Insurance Insurance professionals including CT s Medical Initiative Programs Birth to Three Provider programs insurance companies and parent support groups As part of this training PATH FVCT developed a video to educate the public on the top 10 things a child with ASD wants you to know This training and the video have been very well received and we continue to get requests for this resource from across the state IMPACT on a Family Our nine year old daughter Jana has autism Jana knows only a few words and she needs help with almost everything including eating bathing and dressing Jana does not read and she cannot count to more than 5 When Jana was first diagnosed with autism we knew nothing about it We were new to the United States and everything including Jana s condition was new to us We were referred to PATH FVCT by Northwest Medical Home and have learned much since then PATH FVCT has been a great source of information about autism and they have helped us find ways to help Jana learn We are seeing Jana make advances every day now Without Kevin and PATH FVCT these things would not be happening Thank you Paul and Sissy Wang IMPACT Family Provider Communications 2 6 FY2013 F2F OUTREACH 2 Total Families Served 23 861 Somewhat Useful Families rate the usefulness of the support information resources they received from the CT F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 1 2 Total Professionals Served 9 903 7 9 Web Visits 52 823 Useful 57 9 Extremely Useful Materials Disseminated 3 447 31 6 Very Useful CONTACT PATH FVCT P O Box 117 Northford CT 06472 Phone 1 800 399 PATH CT only or 1 203 234 9554 Website http www pathct org Contact Nanfi Lubogo nlubogo pathct org Carmina Cirioli accirioli att net National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 16 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  PATH Parent to Parent Family Voices of CT  C O N N E C T I C U T  PATH is a network of families providing information...
F2F Delaware Family Voices Delaware Family Voices DE FV is a non profit run by families of CSHCN whose mission is to achieve family centered care and help families be full partners at all levels of decision making This mission is achieved by assisting families as they navigate health systems insurance plans and Medicaid educating families and health care providers about access to services and resources promoting family centered care and medical homes for CSHCN working with families health care providers agencies advocacy and support groups linking families to providers managed care programs and public programs and promoting discussion among groups that serve children HIGHLIGHT Managed Care Organization Monthly Calls D E L A W A R E CSHCN in DE1 36 143 children 17 5 8 916 children have inadequate insurance 7 112 children have conditions that consistently affect their activities 12 724 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 37 3 DE FV facilitates monthly calls with Medicaid Managed Care Organizations home health agencies providers and families of CSHCN to help professionals identify critical issues for families and to provide families with a non adversarial forum to provide feedback on their experiences On the 19 0 calls a family has up to 10 minutes of uninterrupted time to ask a question 11 5 or discuss an issue followed by a problem solving time in which anyone can CSHCN CSHCN participate Over the years we have seen specific policy changes because without with CSHCN Adequate Adequate of these calls Many organizations require at least one staff member to Overall Insurance Insurance participate in this each month as they learn so much about services systems and how policies affect families An example of an impact is that Medicaid is now considering covering hippotherapy after families and an occupational therapist described the benefits on a recent call Families have found they are listened to and appreciate the efforts of participants to address their issue Everyone who participates indicates that they learn something new with each call IMPACT on a Family After a mom had received assistance from DE FV around finding mental health services for her daughter with intellectual disabilities she told the DE FV staff You are truly a very special person to me and Breanna I was thinking about what you said to me about being strong I was a nervous but your counsel gave me courage Thank you for your support 5 4 IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the DE F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 CONTACT NotUseful 8 1 Somewhat Useful 32 4 Extremely Useful 24 3 Useful 29 7 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 1 752 Total Professionals Served 1 140 Materials Disseminated 1 766 Delaware Family Voices Inc 222 Philadelphia Pike 11 Wilmington DE 19809 Phone 302 669 3030 Toll Free 877 235 3588 Fax 302 478 3350 Website http www defv org Contact Ann Phillips annp defv org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 17
F2F  Delaware Family Voices Delaware Family Voices  DE FV  is a non-profit run by families of CSHCN, whose mission is to a...
F2F Advocates for Justice and Education D I C SO TL RU I CM TB I OA F Since 1996 Advocates for Justice and Education Inc AJE has endeavored to empower youth and parents to be effective advocates to ensure that children with disabilities receive appropriate services to meet their needs The F2F at AJE in partnership with Mary s Center for Maternal and Child Care provides training and workshops to families of CSHCN trains parents and caregivers to be Family Navigators to provide emotional support to other families produces resources and publications on best practices and programs affecting CSHCN educates professionals working with CSHCN and partners with stakeholders in the medical and health care fields HIGHLIGHT Leadership Institute for SpanishSpeaking Families CSHCN in DC1 18 819 children 16 6 5 628 children have inadequate insurance 4 043 children have conditions that consistently affect their activities 7 533 do not receive family centered care CSHCN Whose Conditions Cause Financial Problems for the Family 28 2 Recently AJE collaborated with Mary s Center and other agencies serving CSHCN to host a Parent to Parent Leadership Institute for Spanish speaking 15 1 9 6 Families at the Mary s Center Medical Home location Forty eight parents CSHCN CSHCN without with and caregivers of CSHCN attended the two day training to become CSHCN Adequate Adequate Insurance Overall Insurance Certified Family Navigators The Parent to Parent Leadership Institute offers a comprehensive training that focuses on health care and educational advocacy the laws that supporting health care education and related services and most importantly empowering families and developing their leadership skills Some of the topics of this years two day training included Youth Mental Health Advocacy Nutrition and Child Development Multi systemic Therapy Transfer of Educational Rights Understanding the Special Education Process D C Health Benefits Exchange Overview of Autism Spectrum Disorders and Working Effectively with Doctors IMPACT on a Family A parent sought assistance from AJE with obtaining educational medical and community based supports after her daughter had recently been diagnosed with epilepsy AJE helped the parent to obtain Supplemental Security Income and to access a local support group for teens with epilepsy We re pleased with not only the outcomes the family achieved but also with the growth and leadership of the youth The youth was able to effectively communicate with her teachers school administrators and medical providers about the accommodations she desired during her Individualized Educational Planning IEP meeting resulting in a modified Individualized Health Plan IHP Following the IEP meeting the youth informed AJE that she felt empowered and prepared to advocate for herself when needed IMPACT Family Provider Communications FY2013 F2F OUTREACH 2 6 7 Not Useful Families rate the usefulness of the support information resources they received from the DC F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 13 3 Somewhat Useful 37 8 Extremely Useful 11 1 Useful 31 1 Very Useful Total Families Served 5 013 Total Professionals Served 786 Web Visits 13 086 Materials Disseminated 1 400 Trainings 150 CONTACT Advocates for Justice and Education 1012 Pennsylvania Avenue SE Washington DC 20003 Phone 202 265 1432 Fax 202 678 8062 Website http www aje dc org Contact Weade Wallace weade wallace aje dc org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2014 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 18 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Advocates for Justice and Education  D I C SO TL RU I CM TB I OA F  Since 1996, Advocates for Justice and Education, ...
F2F Family Network on Disabilities Founded in 1985 by a group of parents the Family Network on Disabilities in Florida is a grassroots organization advocating for persons with disabilities and their families What started as a group of parents meeting for support and to share information on their children with disabilities has now grown to a full network of families and individuals across the state of Florida Family Support Training Assistance and Resources Family STAR is the F2F project and has the goal to assist families of CSHCN to make informed decisions about health care for their children HIGHLIGHT Healthcare Toolkit The Healthcare Toolkit helps families of children and young adults with special health care needs to be prepared for a medical visit This Toolkit provides a family friendly way for families to keep their children s and young adult s health information at their fingertips and improves communication between families and providers Having records and transcripts in one place may help cut down on health cost for example when doctors do not have to duplicate tests The 102 families youth and professionals who have used the Healthcare Toolkit have provided very helpful feedback on how to improve this resource and we have implemented the changes and suggestions made by all participants This has been a wonderful opportunity for collaboration with families youth and health care professionals IMPACT on a Family We have worked with families throughout Florida helping them get a better understanding of the Affordable Care Act including the positive changes in the Act and how the health care exchange works We have worked closely with a single mother who because of our assistance was able to get the health care coverage she needed for her children enabling them to continue their health care services without interruption She quotes Thanks to Family STAR of FND my family has the health care we need Family STAR has been a blessing to my entire family F L O R I D A CSHCN in FL1 606 215 children 15 0 198 648 children have inadequate insurance 177 321 children have conditions that consistently affect their activities 255 698 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 40 2 17 6 14 6 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance FY2013 F2F OUTREACH 2 Total Families Served 29 606 Total Professionals Served 9 016 Materials Disseminated 1 294 769 IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the FL F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 3 6 Somewhat Useful 17 9 Useful 0 1 2 50 0 Very Useful 20 40 60 28 6 Extremely Useful 80 100 CONTACT Family Network on Disabilities 2196 Main Street Suite K Dunedin FL 34698 Phone 727 523 1130 Toll Free 800 825 5736 Website http www fndfl org Contact Marilyn Ruiz marilyn fndfl org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2014 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 19
F2F  Family Network on Disabilities Founded in 1985 by a group of parents, the Family Network on Disabilities in Florida i...
F2F Parent to Parent of Georgia G E O R G I A Since our beginning in 1980 Parent to Parent P2P of Georgia has been the go to resource for support information education and leadership development for Georgians with disabilities or special health care needs ages birth to 26 and their families The F2F project at P2P provides families of CSHCN and the professionals that serve them with one onone assistance and face to face and online training specifically around health We help families navigate through Georgia s health care system connect families to resources within their communities and provide training to help families and youth participate in planning and decisionmaking on health related issues HIGHLIGHT Round Table Discussions on Transition Planning CSHCN in GA1 411 526 children 16 0 118 817 children have inadequate insurance 96 450 children have conditions that consistently affect their activities 139 533 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 35 6 We are collaborating with Children s Medical Services CMS Georgia s MCHB Division that serves CSHCN to convene discussion groups of parents and professionals across the state around transition planning for 22 4 Georgia To date we have conducted six round table discussions to learn what families need for transition services and support what families have 13 3 experienced in this area what services are working well and what are CSHCN CSHCN without not and what is their biggest fear about their child s transition When all with CSHCN Adequate Adequate Overall Insurance Insurance eight round table discussions are complete results will be used to develop a Georgia State Transition Plan We are thrilled that CMS began this important process with families and has selected a family driven organization to facilitate this work This represents a very significant shift in approach and we are anxious to see the results IMPACT on a Family A single parent who speaks Spanish and has four children with special health care needs was recently provided extensive support by our Spanish speaking coordinator We helped the parent understand SSI Medicaid and the guardianship process and now her children are receiving SSI and Medicaid services and she is successfully navigating the system to procure guardianship for her now 17 year old The parent also attends our health related trainings in Spanish so she can be up to date on any changes in the health care system We have connected her to Hispanic resources within her community so she now has a source of ongoing local support close to home And finally we have matched her to a trained supporting parent so she can talk specifically about some of the health issues her children are experiencing IMPACT Family Provider Communications 7 0 Families rate the usefulness of the support information resources they received from the GA F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 Not Useful 8 1 Somewhat Useful 40 7 14 0 Extremely Useful Useful 30 2 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 16 062 Total Professionals Served 3 649 Total Trainings 250 Materials Disseminated 24 162 CONTACT Parent to Parent of Georgia 3070 Presidential Parkway Suite 2130 Atlanta GA 30340 Phone 770 451 5484 Toll Free 800 229 2038 Fax 770 458 4091 Website http p2pga org Contact Sitara Nayak sitara p2pga org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 20 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Parent to Parent of Georgia G E O R G I A  Since our beginning in 1980, Parent to Parent  P2P  of Georgia has been th...
F2F Hilopa a Family to Family Health Information Center In 2007 to meet the needs of Hawaii families of children with special health care needs the Hawai i Pediatric Association Research and Education Foundation HPAREF and Family Voices of Hawai i partnered together to form the Hilopa a Family to Family Health Information Center The name Hilopa a was given by Kupuna Kahauanu Lake to exemplify the driving force behind the center to braid firmly the service system for our children and youth Our F2F HIC is staffed by parents and friends of CSHCN and we provide free confidential assistance information and referral and training to families raising children and youth with special health needs self advocates and the professionals who serve them HIGHLIGHT Hi ilei Hawai i As a result of the significant change in early intervention eligibility criteria the Hilopa a F2F HIC is a proud partner on a new project with the Hawai i Title V Program providing family support and developmental screening for children birth to age three who are not eligible for early intervention services This follow along program seeks to mentor families on childhood development and assist families to engage with their medical homes regarding developmental concerns and resources The Ages and Stages Questionnaire ASQ and the Modified Checklist for Autism in Toddlers Revised M CHAT R are distributed to families who chose to voluntarily participate in this program to help families understand child development and look for signs that may need further attention We have received 42 referrals to date from every island in the state A specific role for the F2F will be to measure child development progression future eligibility for early intervention and special education and the family s ability to track their son s or daughter s developmental milestones The overall program will also measure the rate of families who choose to be followed through Hi ilei Hawai i program and those who opt not to once they are denied services through early intervention IMPACT on a Family The Hilopa a F2F HIC assisted a family in obtaining retroactive Medicaid eligibility in excess of 4 months for a child with an extensive stay in a hospital s intensive care unit The family was contemplating filing for bankruptcy as they were unable to see how they would be able to pay their child s extensive and ongoing hospital bills The Medicaid coverage eliminated the considerable out of pocket expenses the family was facing and they were relieved that Medicaid would be able to cover future hospital expenses In addition the family now has more options through the Medicaid Long Term Care Services and Supports when the child is able to be discharged as the family s private insurance would only provide a nominal amount of in home care CONTACT Hilopa a Family to Family Health Information Center 1319 Punahou Street Room 742 Honolulu HI 96826 Phone 808 791 3467 Fax 808 531 3595 Website http www hilopaa org Contact Leolinda Parlin leo hilopaa org 1 2 H A W A I I CSHCN in HI1 35 022 children 12 3 8 774 children have inadequate insurance 8 275 children have conditions that consistently affect their activities 11 262 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 27 5 14 0 9 4 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the HI F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 8 4 Useful 33 7 Extremely Useful 57 9 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 3 298 Total Professionals Served 1 527 Materials Disseminated 13 158 Web Visits 8580 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 21
F2F  Hilopa   a Family-to-Family Health Information Center  In 2007, to meet the needs of Hawaii families of children with...
F2F Idaho Parents Unlimited Inc Founded in 1985 Idaho Parents Unlimited Inc IPUL is a statewide organization which houses the Idaho Family to Family Health Information Center F2F along with Idaho Family Voices the Idaho Parent Training and Information Center the Creative Access Art Center and VSA Idaho the State Organization on Arts and Disability The F2F project works to help sustain the health and well being of Idaho s families their children and youth with special health care needs The program values family centered care and honors the strengths cultures traditions and expertise in the family professional partnership I D A H O CSHCN in ID1 53 280 children 12 7 18 693 children have inadequate insurance 15 396 children have conditions that consistently affect their activities 19 965 do not receive familycentered care HIGHLIGHT Pediatric Patient Centered Medical Home Demonstration IPUL partners with the Idaho Department of Health and Welfare Division of Medicaid in the Children s Healthcare Improvement Collaborative to provide support and information to families who serve as parent partners in three medical home pediatric practice sites throughout the state Utilizing resources from Family Voices National and other states we created a medical home workshop which includes an overview of what comprehensive coordinated familycentered care looks like for CSHCN as well as Idaho specific information The parent partners care coordinators medical home coordinators and project staff have leaned heavily on IPUL to provide this training and resources both internally within the project and to parents of children with special health care needs This model of parent professional collaboration is working very well We have offered approximately 20 training workshops over the past two years and have trained both parents and providers within the practice clinics Both groups report an increase in knowledge access to services and improved parent professional collaboration The partnership has now evolved and IPUL is a partner resource in the newly developed Idaho Health Wellness Collaborative for Children IHAWCC which has been established as Idaho s first Pediatric Improvement Partnership The Improvement Partnership is a collaboration of public and private partners that uses measurement based efforts and a systems approach to improve the quality of children s health care IMPACT on a Family I have an 11 year old son diagnosed with Asperger s Disorder ADHD and learning disabilities I have recently been trying to get my son enrolled in children s services through Health and Welfare Trying to navigate systems is like trying to find your way through a labyrinth I came across the IPUL webpage and an online form I described my frustrations expecting that someone would contact me within the week IPUL called me the next day with information on the appeal process for SSI They contacted the Care Coordinator at my child s doctor s office By the end of that day my son had an appointment the next day Without IPUL I still wouldn t know what to do I was extremely impressed by how quickly they provided help IPUL has continued to stay in contact with me which I appreciate The relationship IPUL has with the Care Coordinators at various medical specialty offices is crucial to helping children with special health care needs receive all the services they need Heather I parent IMPACT Family Provider Communications Families rate the usefulness of the 10 0 15 0 support information 55 0 20 0 SomeVery resources they received what Extremely Useful Useful Useful Useful from the ID F2F in helping them partner 0 20 40 60 80 with communicate with talk with work with professionals to make decisions about their child s health care 2 FY2013 F2F OUTREACH 2 100 Total Families Served 6 030 Total Professionals Served 2 214 CONTACT Idaho Parents Unlimited Inc 500 South 8th Street P O Box 50126 Boise ID 83702 Phone 208 342 5884 Toll free 800 242 IPUL 4785 Fax 208 342 1408 Website http www ipulidaho org Contact Angela Lindig angela ipulidaho org 1 2 Web Visits 265 880 Materials Disseminated 1 424 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 22 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Idaho Parents Unlimited, Inc. Founded in 1985, Idaho Parents Unlimited, Inc.  IPUL  is a statewide organization which...
F2F Family Voices of Illinois Family Voices of Illinois the Arc of Illinois Family to Family Health Information Center offers free services for families of children and youth with special needs We provide information directly to families and professionals seeking help via toll free multi lingual information line email and in person We offer in depth training and technical assistance on health issues for CSHCN leadership development for parents and organizations and linkages to local regional statewide and national partners HIGHLIGHT Update on Health Care Reform Annual Conference Each fall Family Voices of Illinois holds an annual Update on Health Care Reform for CSHCN seminar featuring presentations by state agency representatives advocates and family leaders In this year s seminar 104 individuals participated in workshops on Medicaid Reform the Affordable Care Act for Special Populations Private Health Insurance Marketplace and Disability Advocacy Scholarships and stipends were available for families and CEUs and CPDUs were provided for professionals Feedback This seminar provided clarification on ACA implementation in Illinois especially route of access This seminar wilI help me to navigate my child s insurance coverage needs as well as understand more about their Medicaid coverage I feel much more confident now I know where to go AND folks to call if I have questions IMPACT on a Family I L L I N O I S CSHCN in IL1 452 574 children 14 3 157 296 children have inadequate insurance 122 054 children have conditions that consistently affect their activities 145 706 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 35 5 20 6 10 1 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance 21 0 We recently assisted a mother and two children all of whom have a serious genetic disease They were referred by a pediatric tertiary care center We helped them to understand the insurance options newly available under the ACA and to learn the difference between Other Health Impaired IEPs and 504 plans and to decide which option is most appropriate for them We referred them to our state s Title V CSHCN program for care coordination assistance informed them about pre registering with the first responders in their community and how to obtain a Persons With Disability parking placard as well as a reserved street parking space We explored possible Medicaid eligibility options for the children and explained SSDI eligibility for the mother The mother shared her appreciation Thank you for all your valuable information and resources It is good to know there are people out there looking to help each other out I will keep you posted on our status IMPACT Family Confidence FY2013 F2F OUTREACH 2 Total Families Served 20 510 Total Professionals Served 11 302 Families rate the usefulness of the support information resources they received from the IL F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 3 4 Extremely Useful 58 6 37 9 Useful Very Useful Materials Disseminated 25 000 CONTACT Family to Family Health Information Center 20901 LaGrange Rd Suite 209 Frankfort IL 60423 Phone 866 931 1110 English 800 588 7002 Spanish Toll Free 866 931 1110 Fax 815 464 5292 Website http www familyvoicesillinois org Contact Faye Manaster familytofamily thearcofil org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 23
F2F  Family Voices of Illinois Family Voices of Illinois, the Arc of Illinois Family-to-Family Health Information Center, ...
F2F Family Voices Indiana I N D I A N A Families at all stages of the journey of raising children with disabilities and special health care needs encounter a complex maze of systems and services Systems are undergoing frequent changes and new policies and programs new procedures for enrollment and re determination changes in eligibility requirements and program coverage are providing even more challenges to families seeking care for their children Developing and supporting family leaders as partners at all levels allows systems to better understand family needs and helps families to better navigate and influence the process It is the mission of FV Indiana to fill the information needs of families while developing family leaders to be sure that a strong family voice is available to help systems to meet needs CSHCN in IN1 268 717 children 17 0 90 466 children have inadequate insurance 74 372 children have conditions that consistently affect their activities 79 784 do not receive familycentered care HIGHLIGHT Guide to the ACA Our guide to the ACA focuses on important topics for families of CSHCN to consider when evaluating health insurance policies including information about the new Marketplace The guide s information is accessible in various formats online information monthly blog articles in person trainings online videos and a webquest document with ACA information linked to relevant resources and applications All of this material is available via a newly developed portal on our website dedicated to health care reform We have logged approximately 300 hits on our health care reform portal and over 750 hits on the ACA blog series that information is also disseminated via social media and by partner agencies In addition the online video has been viewed over 50 times in a very short period of time IMPACT on a Family We were contacted by the grandmother of child with significant health care needs who had been referred by the National Center for Family Professional Partnerships She was seeking assistance in finding resources to better support her granddaughter s needs Our specialist explained various programs that might be appropriate and the grandmother decided to pursue our Medicaid waiver program The form is often confusing for families and our specialist assisted the grandmother in understanding the program and in completing the necessary paperwork I am willing to do the leg work but am not always clear as to what leg work I should be doing This is where Family Voices Indiana has been a tremendous help I truly am overjoyed with the help provided by Family Voices Indiana Nancy L IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the IN F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 0 20 0 Useful 20 CONTACT 40 0 Very Useful 40 Total Families Served 19 880 Total Professionals Served 1 865 6 7 Somewhat Useful 8 9 Not Useful FY2013 F2F OUTREACH 2 60 24 4 Extremely Useful 80 Web Visits 26 914 100 Materials Disseminated 12 793 Trainings 130 Family Voices Indiana 445 N Pennsylvania St Ste 941 Indianopolis IN 46204 Phone 317 944 8982 Website http fvindiana org Contact Rylin Rodgers info fvindiana org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 24 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family Voices Indiana I N D I A N A  Families at all stages of the journey of raising children with disabilities and ...
F2F ASK Resource Center Parents of children with special needs formed Access for Special Kids Resource Center ASK in 1992 The F2F project at ASK Family toFamily Iowa is a statewide network of organizations and trained family members who provide various forms of natural supports to families of children with special needs developmental behavioral emotional and or physical Guided by a Family Advisory Council of organizations from across Iowa we work together to help families navigate the health supports and services available for their CSHCN help families by connecting them with other parents with similar experiences and help families develop self advocacy skills through trainings and resources HIGHLIGHT Together We Can Conference I O W A CSHCN in IA1 105 815 children 15 0 31 825 children have inadequate insurance 25 693 children have conditions that consistently affect their activities 33 421 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family Our Family to Family Iowa project is made up of over thirty 37 0 organizations that not only support families but work together to improve one another s outreach and support strategies Due to budget cuts families and family organizations lost the opportunity to participate in a statewide family conference where they had networked and 20 6 supported one another for a number of years The only conferences 12 0 left targeted professionals We blended funding from several sources CSHCN to meet the need for a conference for families that would share critical CSHCN without with CSHCN Adequate Adequate information and resources and provide opportunities for networking Overall Insurance Insurance The 2013 conference had 182 participants representing families from all metropolitan areas of Iowa and many rural regions Evaluations indicated an average growth of knowledge of 2 5 points on a 5 point Likert scale for each session 15 sessions and all Keynotes 3 Keynotes 98 of surveyed participants rated the timeliness high quality and usefulness of conference materials as a 4 or 5 on a 5 point scale 5 being the highest FEEDBACK Many of the family participants in the conference indicated they would use the resources to help other families once back home and many reported later in the year that they had done so via creating job opportunities starting new support groups in local areas and connecting to solve issues across the state via social media What a great conference Do it again it Families need you I got so much out of this conference So many great people that really cared about families and support us This was really excellent and I am so glad I got to attend Well organized and very useful information FY2013 F2F OUTREACH 2 Total Families Served 12 081 Total Professionals Served 5 892 Materials Disseminated 55 192 Web Visits 23 395 Trainings 526 CONTACT Family to Family IOWA c o ASK Resource Center 5665 Greendale Road Suite D Johnston Iowa 50131 Phone 515 243 1713 Toll Free 800 450 8667 Fax 515 243 1902 Website http www askresource org Contact Karen Thompson Project Director karen askresource org Paula Connolly Project Coordinator paula askresource org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 25
F2F  ASK Resource Center Parents of children with special needs formed Access for Special Kids Resource Center  ASK  in 19...
F2F Families Together Inc K A N S A S For more than 30 years Families Together Inc has encouraged educated and empowered Kansas families which include children with disabilities The F2F at Families Together Inc was established to provide guidance and support around health issues for families of children and youth with special health care needs We help families navigate the health care systems and work with their child s medical home We help families become better advocates for their children We provide this help through one to one interactions with families and professionals and through a variety of trainings and other educational opportunities offered across the state 120 822 children 17 3 37 465 children have inadequate insurance 28 930 children have conditions that consistently affect their activities 35 755 do not receive familycentered care HIGHLIGHT Health Summits Team Empowerment Conferences TEC CSHCN Whose Conditions Cause Financial Problems for the Family Every fall we hold an annual Health Summit TEC to provide news and current resources on health issues for CSHCN Families of CSHCN youth with SHCN professionals and vendors participate in the summit Topics addressed are timely and this year included Health Homes in KanCare Affordable Care Act Mental Health and Health Care Sexuality and Stress Management Our keynote speaker was an individual with a disability who shared her experience growing up and overcoming challenges in her life We provided scholarships for families to attend Forty one individuals participated in the event Feedback demonstrates the importance of this event for families The keynote speaker gives me hope that my child can take on the world if she wants The Sexuality workshop answered so many questions Thank you so much for the opportunity to participate in this Summit It was so helpful to me and my child CSHCN in KS1 46 6 26 3 15 9 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family My son Karim is 10 years old and has Down Syndrome Going to the Health Team Empowerment conferences and other meetings has changed our life I was a mom that did everything for Karim At nine years old I was still feeding and dressing him Everything Karim wanted he got all he had to do was point I was treating him like a baby My son was not happy and my family and I didn t realize we were harming him With the support and information provided by the Family to Family Health Information Center at Family Together Inc we learned to help Karim become more independent Karim is a different child now he plays with the other children gets dressed cleans up after himself and of course he gets in trouble like any other 10 years old Thank you Karim s mom IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the KS F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 1 7 Not Useful 9 9 9 9 Extremely Somewhat Useful Useful FY2013 F2F OUTREACH 2 Total Families Served 14 068 Total Professionals Served 9 114 Materials Disseminated 33 072 Trainings 129 39 5 Very Useful 39 0 Useful CONTACT Families Together Inc 3033 West 2nd Street Room 122 Wichita KS 67203 Phone 316 945 7747 Toll Free 888 815 6364 Website http familiestogetherinc org Contact Tami Schwindt Allen tami familiestogetherinc org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 26 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Families Together, Inc. K A N S A S  For more than 30 years, Families Together, Inc., has encouraged, educated and em...
F2F Kentucky Family to Family Health Information Center The KY F2F at the Commission for Children with Special Health Care Needs is a network of trained Support Parents who have expertise with health care delivery systems that prepares them to provide key support to families of individuals with special needs The F2F helps families make more informed choices by providing information resources and training HIGHLIGHT Affordable Care Act Enrollment Assistance K E N T U C K Y CSHCN in KY1 197 916 children 19 5 55 061 children have inadequate insurance 58 511 children have conditions that consistently affect their activities 63 376 do not receive familycentered care KY F2F has been very involved with the Affordable Care Act in Kentucky We recruited 10 Support Parents Mentors who were interested in CSHCN Whose Conditions Cause becoming Kynectors They received training and worked directly with Financial Problems for the Family families across the state to assist them in enrolling and answering their questions There were many barriers that made families hesitant to enroll Some families were confused from the stories they had heard Many families were not familiar with how to use the technology to enroll Others didn t realize that the ACA was for children and adults Some feared government involvement Our Kynectors helped families understand the program and when they ran into specific issues we were able to talk with the Office of Health Benefit Exchange and seek solutions Many families who had not understood the process until they connected with us expressed their gratitude IMPACT on a Family I came to the Kentucky Family to Family Health Information Center at the Commission for Children with Special Health Care Needs through a social group for teens and young adults with disabilities One of my peers in the group was the daughter of the Co Director of Family to Family She invited me to be a Mentor Support Person As a Mentor Support Person for Kentucky s Family to Family I help individuals with special needs and their parents with difficult situations I speak with them sharing all I ve learned at Kentucky Family to Family and what I know from my life experiences Being a young woman with Cerebral Palsy I can relate to the kids as someone who understands the barriers they face and when I do it isn t pandering because I ve gone through a lot of the same things they are experiencing Parents can see what I have accomplished and feel hope that their children can achieve a great deal despite their disabilities I recently talked with a family whose daughter was having the same surgery I had several years ago so I could speak as to how her daughter feels and share with them how it still helps me now I also trained to be a Kynector and helped families navigate their way through what seemed like an overwhelming process in signing up for the Affordable Care Act What being a Mentor Support Person has done for me is push me to be an even better person I feel blessed in terms of my disability I am thankful that I have come so far I am thankful that parents can look to me as a positive example and kids can see me as a peer a mentor and a friend Working as a Mentor Support Person I am able to give back and the immense joy I feel because of that is indescribable IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the KY F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 2 2 Somewhat Useful 30 3 Very Useful 12 4 Useful 0 1 2 20 FY2013 F2F OUTREACH 2 Total Families Served 3 026 Total Professionals Served 622 Materials Disseminated 15 770 Trainings 273 CONTACT 55 1 Extremely 55 1 Extremely Useful Useful 40 60 80 100 KY Family to Family Health Information Center 310 Whittington Parkway Suite 200 Louisville KY 40222 Phone 502 429 4430 Toll Free 800 232 1160 Fax 502 429 7161 Contact Debbie Gilbert DebbieA Gilbert ky gov Eastern KY Sondra Gilbert Sondra Gilbert ky gov Western KY National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 27
F2F  Kentucky Family-to-Family Health Information Center  The KY F2F at the Commission for Children with Special Health Ca...
F2F Bayou Land Families Helping Families L O U I S I A N A Bayou Land Families Helping Families BLFHF is a non profit family resource center that provides information and referral education and training and peer to peer support to individuals with disabilities or special needs and their families As the F2F we partner with Families Helping Families Resource Centers across the state all of whom are led by parents of CSHCN to assist families dealing with their child s health care challenges and to help them navigate the health care financing maze HIGHLIGHT Bridging the Gap Transitioning from Adolescence to Adulthood Adolescents transitioning into adulthood have previously relied on parental support and need further education on self advocacy To address these needs we have developed a Leadership Academy to prepare adolescents with a disability to transition to adult care services in such areas as Health Care Information on what adolescents will need to transition from pediatric care to adult health care and what options are available to them Education The importance of having a transition plan in an IEP and information on transitioning to post secondary education Employment Information and resources on employment opportunities and independent living Advocacy Education on self advocacy Our first Leadership Academy is scheduled for May 29 2014 and families and professionals who have received information about the Leadership Academy anticipate that the information gained will be very useful IMPACT on a Family A family that came to us for help was on the verge of placing their young son in an institution because of extremely challenging behaviors and concern for the safety of their other child They had been unsuccessful in connecting to services on their own and their requests for help from their Medicaid Waiver support coordinators had gone unanswered We were able to connect the family directly with developmental disability services to use for emergency respite when their support coordination services failed to assist them This mom told us that although she had made multiple calls we had done more for their family in one day then any support coordinator or other service provider had been able to accomplish FY2013 F2F OUTREACH 2 Total Families Served 36 320 Total Professionals Served 6 213 Materials Disseminated 724 89 1 2 CSHCN in LA1 207 840 children 18 6 63 816 children have inadequate insurance 62 937 children have conditions that consistently affect their activities 80 160 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 36 1 23 4 16 6 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the LA F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 2 5 Not Useful 3 3 Somewhat Useful 27 5 Extremely Useful 37 5 Useful 29 2 Very Useful CONTACT Bayou Land Families Helping Families Inc 286 Hwy 3185 Thibodaux LA 70301 Phone 985 447 4461 1 800 331 5570 Fax 985 447 7988 Website http www blfhf org Contact Julie Folse F2fhic gmail com National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 28 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Bayou Land Families Helping Families  L O U I S I A N A  Bayou Land Families Helping Families  BLFHF  is a non-profit...
F2F Maine Parent Federation The Maine Parent Federation MPF in existence since 1984 administers the F2F Center in Maine through Project REACH REsponsive Advocacy for Children s Health The goal of the program is to assure that Maine s families of children with special health care needs partner in decisionmaking at all levels and are satisfied with the services they receive Families receive a wide variety of information education referral training advocacy and a range of family supports The program builds upon the partnership between MPF and Maine s Maternal and Child Health Title V CSHCN Program M A I N E CSHCN in ME1 53 122 children 19 4 13 620 children have inadequate insurance 14 086 children have conditions that consistently affect their activities 14 469 do not receive familycentered care HIGHLIGHT Family Support Navigator Program CSHCN Whose Conditions Cause Financial Problems for the Family This past year we have instituted the Navigator Program which trains support parents to better help families of CSHCN Navigators work with the family to develop a family support plan which identifies the family s need and strategies to meet those needs A plan of empowerment is developed identifying training or activities to help the family gain the skills and knowledge they need to be able to navigate the system without support if the situation should arise again We have trained 18 Navigators within the program Early evaluation results are very positive 100 of the families who have received Navigator services report that their Navigator understood their needs and that they could not have gotten the supports they needed without the help of the Navigator We received initial funding for this program from the state Children s Behavioral Health program and have been able to expand with blended funding from several grants 36 4 18 6 12 0 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family A family with a young adult incarcerated in a youth detention facility connected with a Navigator The Navigator went to the home to meet with the parents and found that the family had many questions about how to help their child and that the father himself had mental health issues and was unable to leave the house The Navigator helped the family develop a plan and become involved in their child s program The family members are on their way to becoming stronger more informed and more involved FY2013 F2F OUTREACH 2 Total Families Served 15 948 IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the ME F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 2 9 Somewhat Useful 5 7 Useful Total Professionals Served 4 273 12 9 Very Useful Materials Disseminated 40 200 Trainings 88 0 20 78 6 Extremely Useful 40 60 80 100 CONTACT Maine Parent Federation Inc PO Box 2067 Augusta ME 04338 Phone 800 870 7746 Email parentconnect mpf org Website http www mpf org Contact Robin Levesque rlevesque mpf org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 29
F2F  Maine Parent Federation The Maine Parent Federation  MPF , in existence since 1984, administers the F2F Center in Mai...
F2F The Parents Place of Maryland M A R Y L A N D Founded in 1991 The Parents Place was created by parents of children and youth with disabilities to help other parents and families facing similar challenges The purpose of our F2F is to ensure that children and youth with special health care needs have the knowledge and assistance they need to make informed decisions that support their child s health We provide peer support to families and information and education to families professionals and the community at large HIGHLIGHT Maryland Community of Care Consortium for Children and Youth with Special Health Care Needs The Maryland Community of Care Consortium for Children and Youth with Special Health Care Needs COC is a working group of over 150 diverse stakeholders including families providers advocates consumers administrators and professionals from the public and private service systems The COC meets quarterly and offers a forum for information exchange problem solving consensus building and collaborative action Using the national agenda for CSHCN and core outcomes as a starting point the COC works to improve systems of care for Maryland CSHCN and their families Organizations and individuals across the state have formed new partnerships that positively impact and effectively address gaps and barriers in services such as bringing mobile rehabilitation services to rural areas In addition this statewide initiative has spawned regional COC consortia that are working at the local level to further improve services for CSHCN and their families CSHCN in MD1 211 442 children 15 7 69 425 children have inadequate insurance 47 847 children have conditions that consistently affect their activities 67 001 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 31 4 18 3 10 3 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family We recently assisted the family of a child with autism and other disabilities that had encountered multiple barriers to receiving services for their child Mom enrolled in our Health LEADers training program and became an active member of the COC We helped her understand the newly expanded Maryland Habilitative Services Mandate that now requires coverage for autism treatment After being refused services by their insurance company mom was able to successfully advocate for her child based on her knowledge of the new law and secure the necessary treatment She had this to say Because of the information and opportunities shared through the Health LEADers and COC programs I was able to gain the confidence and knowledge to advocate not only for my child but others as well I recently provided testimony at the state and national level regarding issues related to children with autism and other developmental disabilities IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the MD F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 6 5 Useful FY2013 F2F OUTREACH 2 Total Families Served 58 576 Total Professionals Served 18 379 Web Visits 40 125 Materials Disseminated 14 473 Trainings 149 1 2 CONTACT Parents Place of Maryland 801 Cromwell Park Drive Suite 103 Glen Burnie MD 21061 Phone 410 768 9100 FAX 410 768 0830 Website http www ppmd org Contact Josie Thomas Executive Director Pattie Archuleta Family to Family Coordinator 46 7 Extremely Useful 46 7 Very Useful National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 30 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  The Parents    Place of Maryland  M A R Y L A N D  Founded in 1991, The Parents    Place was created by parents of ch...
F2F Massachusetts Family Voices at the Federation for Children with Special Needs Massachusetts Family Voices at the Federation for Children with Special Needs provides free confidential individualized assistance to families raising children and youth with special health care needs and promotes parent professional partnerships with health professionals school personnel and others Activities include providing a forum for families to connect share information resources about health issues advocating for improved systems of health care for children youth with special health care needs and developing opportunities and mentoring families to partner with health care professionals HIGHLIGHT Listserv We have created a very active statewide listserv where families of CSHCN and their professional partners share information resources ask questions and learn from each other s collective experience Currently over 600 parents professional participate Each posting on the list is moderated by staff with the intention of keeping a friendly positive and informative tone At times we ask that some responses be done offline directly to person posting to assure confidentiality Posts are approved by a moderator at least once a day We also post a question of the week to facilitate discussion of a current topic Community events are also frequently shared The outcomes have been overwhelming A recent month had over 250 postings about a wide range of topics such as a referral to a provider equipped to meet specific needs tips on how to book appointments to avoid long waits with a specific provider advice on choosing health coverage when an employer changes plans questions on how to coordinate Medicaid benefits and private insurance a conference on Respite care The listserv helps families and professionals learn more about what is available for a specific child as well as sharing information broadly with others Families regularly thank us for this resource M A S S A C H U S E T T S CSHCN in MA1 261 475 children 18 3 85 476 children have inadequate insurance 64 675 children have conditions that consistently affect their activities 73 281 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 32 7 19 1 12 3 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family A parent called us requesting assistance for their son with social emotional issues We were able to help them navigate the Masshealth system and get access to Behavioral Health services They now have a home based therapist As a result the son is learning coping strategies the family has learned different communication strategies and the stress level has decreased for all The parent has since joined our listserv to connect with other families and share resources IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the MA F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 1 2 10 3 17 2 Not Extremely Useful Useful 13 8 Somewhat 27 6 Useful Very Useful 31 0 Useful FY2013 F2F OUTREACH 2 Total Families Served 72 606 Total Professionals Served 9 664 Web Visits 56 200 Materials Disseminated 5 380 CONTACT Mass Family Voices at Federation for Children with Special Needs The Schrafft Building 529 Main Street Suite 1102 Boston MA 02129 Phone 617 236 7210 Toll Free 800 331 0688 Fax 617 572 2094 Website http fcsn org mfv Contact Cathy Hickey chickey fcsn org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 31
F2F  Massachusetts Family Voices at the Federation for Children with Special Needs  Massachusetts Family Voices at the Fed...
F2F MI Family to Family Health Information Center at the Michigan Public Health Institute MPHI M I C H I G A N MPHI was awarded the F2F grant one year ago Our work this year has centered around building infrastructure for the work of this grant including hosting an open forum to create interest in the MI F2F HIC and to engage community partners forming an advisory board made up of parents and community partners development of a website and ground work on a resource repository that will be used by families as well as community partners HIGHLIGHT Care Coordination Empowering Families CSHCN in MI1 430 222 children 18 4 140 760 children have inadequate insurance 105 514 children have conditions that consistently affect their activities 141 967 do not receive familycentered care In partnership with the Region 4 Midwest Genetics Collaborative we CSHCN Whose Conditions Cause provided the training Care Coordination Empowering Families The goal was Financial Problems for the Family to provide a learning opportunity for parents of CSHCN to gain the skills 31 9 knowledge and resources they need to coordinate care for their child with complex needs in partnership with a culturally competent medical home Participants learn the concept of the medical home advocacy skills 18 2 techniques to organize information and find reliable resources tips to navigate health care and insurance systems including information on the 10 0 ACA skills to increase communication and coordination between multiple CSHCN CSHCN without with providers transition planning and the importance of peer support and CSHCN Adequate Adequate Overall Insurance Insurance coping with stress Eighteen parents attended this one day training held in Detroit Michigan In an evaluation 100 of the participants stated they were likely to include new individuals on their child s care team that they see the role they play in their child s health care changing as a result of the training and agreed that they had skills and knowledge surrounding medical home care coordination transition advocacy and communication skills after the training IMPACT on a Family Rico L shared this information about his experience with the Care Coordination Empowering Families training he attended in Detroit The training you gave was on point and very helpful As a result of this training I feel much more confident and prepared to deal with medical obstacles My daughter now has a patient care coordinator who is able to schedule appointments in one day back to back instead of our having to come to the hospital multiple times I hope you do more such trainings to help parents who need this foundational information to cope with their child s medical challenges CONTACT Michigan Public Health Institute 2364 Woodlake Drive Suite 180 Okemos MI 48864 Phone 517 324 8366 Fax 517 347 6189 Website www f2fmichigan org Contact Kristen Hawkins khawkins mphi org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 32 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  MI Family-to-Family Health Information Center at the Michigan Public Health Institute  MPHI   M I C H I G A N  MPHI w...
F2F PACER Center Founded in 1977 PACER Center was created by parents of children and youth with disabilities to help other parents and families facing similar challenges The F2F at PACER provides a central source for families of CSHCN to obtain support advocacy and information about the health care system We promote family centered care and family and professional collaboration at all levels of health care and have a strong commitment to promote and support the needs of families from racially culturally and linguistically diverse communities HIGHLIGHT Workshop Stay on the Right Track Help Your Child Eat Well Stay Fit and Lead a Healthier Lifestyle M I N N E S O T A CSHCN in MN1 179 162 children 14 3 56 689 children have inadequate insurance 33 718 children have conditions that consistently affect their activities 50 879 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family This collaborative workshop offers information that parents of children with disabilities and special health care needs can use to help the whole family live a healthier lifestyle Information on nutrition exercise well child visits and community recreation resources is presented by a nutritionist exercise physiologist pediatrician and F2F staff Our most recent workshop was attended by 98 families As a result of the workshop one parent approached her local recreation center to explore the possibility of developing a class specifically for CSHCN Ten children between the ages of 6 and 12 now participate in the weekly class They play soccer floor hockey ride bikes dance and participate in obstacle courses Meanwhile the parents get to know each other in the bleachers and exchange experiences and resources Feedback This 40 7 23 2 14 8 CSHCN with Adequate Insurance CSHCN Overall type of networking for both the parents and the kids doesn t happen often when your child has a disability or special health care need By having the workshop PACER s F2F was the spark to make this community recreation class happen CSHCN without Adequate Insurance FY2013 F2F OUTREACH 2 IMPACT on a Family Total Families Served 86 363 We were recently contacted by a family that adopted a child with significant special health care needs from our state foster care system When the adoption was finalized the child s in home nursing hours were drastically reduced from 24 hours to 12 hours per day We helped the family appeal the reduction of hours and reinstate the amount to the original 24 hour in home nursing care Quote from family Thank you so much for your help navigating our daughters appeal process I am so thankful for your insight encouragement and listening ear and for making phone calls when I was overwhelmed We are so blessed by your help care and concern Total Professionals Served 23 917 Web Visits 54 626 IMPACT Service Navigation CONTACT PACER Center 8161 Normandale Blvd Bloomington MN 55437 Phone 952 838 9000 Toll Free 888 248 0822 Fax 952 838 0199 Website http www pacer org Contact Wendy Ringer wendy ringer pacer org Families rate the usefulness of the support information resources they received from the MN F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 2 Not Useful 1 2 Somewhat Useful 16 3 Useful 0 1 2 37 2 Very Useful 20 40 44 2 Extremely Useful 60 80 100 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 33
F2F  PACER Center Founded in 1977, PACER Center was created by parents of children and youth with disabilities to help oth...
F2F Family Voices of Mississippi M I S S I S S I P P I The MS F2F is a collaboration of The University of Southern Mississippi Institute for Disability Studies and the Title V Children s Medical Program CMP of the Mississippi State Department of Health and LIFE of Mississippi Inc Located in the Jackson office of the Institute for Disability Studies the F2F is managed by the parent of a CSHCN Through project activities the F2F Center works to enable families to be knowledgeable comfortable and competent in addressing the Title V system with regard to their child s unique health care needs as well as in advocating for ongoing and continuous quality improvement 124 905 children 16 4 41 255 children have inadequate insurance 34 948 children have conditions that consistently affect their activities 53 437 do not receive familycentered care HIGHLIGHT Empowering Families with Resource to Navigate the Health Care System CSHCN Whose Conditions Cause Financial Problems for the Family The Mississippi F2F in partnership with CMP assists families in navigating complex system of health care and education CMP coordinates pediatric multi specialty services through the University of Mississippi Medical Center Mississippi s Children Hospital and other specialty programs statewide By placing a parent liaison within a CMP facility the MS F2F provides families with best practice tools that empower them to make decisions that will impact their children with special health care needs The F2F also assists professionals serving CSHCN around the state by sharing community resources CSHCN in MS1 27 4 21 0 13 2 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family The MS F2F Parent Liaison recently assisted a mother and her child with a physical impairment and developmental delay The child s wheelchair had malfunctioned at school and the child had remained at home for more than a week missing important days at school The Parent Liaison helped the mother transport the wheelchair to a local vendor for services since the mother did not have an accessible vehicle or the 85 vendor service fee While in route to and from the vendor the Parent Liaison was able to help the mother understand the importance of keeping her child s CMP clinic appointment which would allow the child to be seen by the multi specialty professionals and also get wheelchair services through an onsite durable medical equipment vendor The Parent Liaison was able to share information about medical home decision making accessing community based services partnering communicating with providers and the Affordable Care Act as well as advocating for services for the family The 23 year old mother of three children expecting her fourth child was thrilled to have someone who really understood her challenges IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the MS F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 CONTACT 10 1 Extremely Useful 43 0 Very Useful 7 6 FY2013 F2F OUTREACH 2 Somewhat Useful 39 2 Useful Total Families Served 2 890 Total Professionals Served 2 328 Trainings 131 Family Voices of Mississippi 118 College Drive Hattiesburg MS 39406 0001 Phone 601 432 6261 Website http www usm edu disability studies family 2 family overview 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 34 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family Voices of Mississippi  M I S S I S S I P P I  The MS F2F is a collaboration of The University of Southern Miss...
F2F Missouri Family to Family UMKC Institute for Human Development The Missouri Family to Family serves individuals with disabilities and or special health care needs their families and professionals who support them We offer free individualized and family centered support provided by family information specialists and trained family mentors Our resources are available in print or virtually in English Spanish and other languages and alternative formats HIGHLIGHT Charting the Life Course Tools for a Good Life Charting the Life Course is a Framework that we have developed to help CSHCN at any age or stage of life and their families to think about what they need to know identify how to find or develop supports and discover what it takes to live a good life We have developed tools based on this Framework including a Life Course Booklet with questions to guide families in thinking about quality life for their CSHCN Additionally the Life Course Folder provides families with resources and information on services and eligibility criteria The Trajectory Worksheet helps people create a vision for a good life for their CSHCN and encourages them to explore a variety of supports to obtain that vision including community resources technology friends and family as well as traditional resources for which they may be eligible M I S S O U R I CSHCN in MO1 252 734 children 17 7 79 149 children have inadequate insurance 69 763 children have conditions that consistently affect their activities 83 670 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 37 1 19 7 11 2 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family Missouri Family to Family conducted a workshop to help families learn about Charting the Life Course and how to use the Trajectory Worksheet in planning for their family member with a special health care needs A mother of an 8 year old reported back to us that she went home that night and applied what she had learned to her family s unique situation One of her biggest takeaways from the workshop was that she and her family were not just planning for services but were actually planning for LIFE The mother shared her appreciation The Trajectory Worksheet really helped us as a family think positively about the future and think about life experiences and supports that will help not only my son with special needs but our entire family as we move forward with a vision for a good life Thank you IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the MO F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 FY2013 F2F OUTREACH 2 Total Families Served 7 754 Total Professionals Served 1 656 Materials Disseminated 72 493 Trainings 151 9 8 28 3 Extremely Useful Not Useful 13 0 Somewhat Useful CONTACT 16 3 Very Useful 1 2 32 6 Useful Missouri Family to Family UMKC Institute for Human Development 215 W Pershing Kansas City MO 64108 Phone 816 235 1763 Kansas City Toll Free 800 444 0821 Fax 888 503 3107 fax Website http www mofamilytofamily org Contact Michelle Reynolds reynoldsmc umkc edu National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 35
F2F  Missouri Family-to-Family, UMKC-Institute for Human Development  The Missouri Family-to-Family serves individuals wit...
F2F Parents Let s Unite for Kids PLUK M O N T A N A PLUK a private nonprofit organization formed in 1984 by parents of children with special needs in the state of Montana PLUK provides information support training and assistance to children at home school and as adults and houses the Montana F2F HIGHLIGHT Family Advocates in Medical Settings Using the Rhode Island Pediatric Practice Enhancement Project as a model the Montana F2F began to collaborate with the Mountain States Regional Genetics Collaborative MSRGC in March of 2013 to provide care coordination to families of CSHCN in two pediatric practices This project facilitates pediatric medical home implementation by providing practices a low cost high value method of ensuring family centered community based culturally effective coordinated comprehensive accessible and continuous care It places and supports trained Family Advocates in these pediatric clinical settings to link families with community resources assist physicians and families in accessing specialty services and identify systems barriers to coordinated care Family Advocates within these medical home practices Answer families questions about systems of care and community resources Give families a consistent source of information so care for a patient does not stop between visits Bridge the gap between the medical practice and other areas of family concern such as education social services family issues etc Demonstrate a commitment to family centered care and give a medical practice the ability to address the family as a whole rather than just the initial purpose of the appointment Help families understand and carry out medical recommendations Allow for a Systems of Care approach to coordinating a family s nonmedical special health care needs Show families a commitment to helping their family and child have healthy outcomes Plans are in place to expand the project to two more locations with four more Family Advocates Agreements have been completed with another private pediatric practice and with a hospital primary care system The lessons learned from the clinical experience of the first cohort of Family Advocates will be shared through trainings within the state The goals for year two will be to actualize the model and develop a comprehensive data collection and evaluation plan to support sustainability IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the MT F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 2
F2F  Parents, Let   s Unite for Kids  PLUK  M O N T A N A  PLUK, a private, nonprofit organization formed in 1984 by paren...
F2F PTI Nebraska PTI Nebraska the Family to Family Health Information center is a statewide resource for families of children with disabilities and special health care needs We provide one to one assistance to parents and professionals on services and disability specific information conduct relevant no cost workshops statewide disseminate printed and electronic resources and encourage and support parents in leadership roles HIGHLIGHT PTI Webinars The F2F through PTI Nebraska offers webinars twice a month to families and professionals across the state on topics of interest Many topics are chosen based on input suggested on the webinar evaluations The webinars are presented twice during the day during lunch hour and in the evening This provides families options to participate at times that are convenient Webinars are enhanced with a teleconference connection Initially we were concerned that not all families would know how to connect to a webinar However the teleconference support provided through a voice link assists with the computer connection as well as providing an easy way to voice questions in a manner that everyone understands The webinars are well attended and have reached both urban and rural families better than any other method of sharing information In the past year 126 parents and professionals have participated from all regions of the state Topics have included the Individual Health Care Plan Teaching Teens about Health Care Disaster Preparedness Transition and Seizures and Children N E B R A S K A CSHCN in NE1 61 071 children 13 7 20 068 children have inadequate insurance 11 936 children have conditions that consistently affect their activities 19 225 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 37 8 22 5 12 7 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family A family sought the support of the F2F at PTI Nebraska several times over many months while trying to get ACA insurance coverage for their children Both parents are insured through the Veterans Administration but their coverage as veterans didn t cover their 2 children They ran into problems on the ACA enrollment website when seeking coverage for their children The ACA website kept sending the family to Nebraska Medicaid Knowing they were over income for Medicaid in Nebraska because Nebraska has not expanded Medicaid the family filed the application anyway The ACA website stated that the children would be eligible for Medicaid After many attempts of re entering enrollment information they were told that because the parents had coverage there would be no tax credit for the children s coverage Because the youngest child has autism the site kept sending the family to Nebraska Medicaid for which the child wasn t eligible We helped by providing information on the ACA 800 number the Medicaid application process issues with denial that were part of the ACA enrollment process and talked through the parents resulting frustration Finally on the last day for sign up the family was able to get through the enrollment process choose a plan for the children and pay the initial premium FY2013 F2F OUTREACH 2 IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the NE F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 1 2 Not Useful 7 1 Somewhat Useful 16 7 Useful 0 1 2 20 Total Families Served 2 122 Total Professionals Served 424 Web Visits 7 554 Materials Disseminated 1 089 902 CONTACT 45 2 Very Useful 40 60 29 8 Extremely Useful 80 100 PTI Nebraska 564 Leavenworth St Suite 202 Omaha NE 68105 Phone 402 346 0525 Toll Free 800 284 8520 Fax 402 934 1479 Website http pti nebraska org Contact Nina Baker nbaker pti nebraska org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 37
F2F  PTI Nebraska PTI Nebraska, the Family-to-Family Health Information center, is a statewide resource for families of ch...
F2F Family TIES of Nevada N E V A D A Family TIES of Nevada is a statewide nonprofit organization established in 2001 and directed by people with disabilities or family members of CSHCN Families TIES has been the home of the NV F2F since 2005 The F2F offers no cost family centered services that include training information and assistance community outreach emotional support and advocacy to families of CSHCN We are committed to ensuring that all families of CSHCN participate in making informed choices about health care in order to promote good treatment decisions cost effectiveness and improved health outcomes for such children CSHCN in NV1 82 108 children 12 0 28 055 children have inadequate insurance 23 550 children have conditions that consistently affect their activities 33 400 do not receive familycentered care HIGHLIGHT Collaboration to Support Young Children Working with partners in the S Nevada Immunization and Health Coalition SNIHC the need for an immunization clinic and back to school fair customized especially for the unique needs of CSHCN emerged as a priority after recognizing how overwhelming our large back to school events can be for children with special needs Family TIES and Nevada Early Intervention Services South NEIS teamed up to create a new community event Family TIES Health Day to ensure CSHCN have access to immunizations and a healthy start to the school year The event drew 20 vendors and more than 100 families who made connections to health resources including pediatricians immunizations vision screening WIC programs and disability resources Families expressed appreciation for the opportunity to get the resources needed for the school year while avoiding long lines overstimulation and meltdowns experienced during previous back to school events This collaboration introduced new SNIHC partners who are focused on serving CSHCN Family TIES and NEIS were recognized by SNIHC with the Silver Syringe Award for Collaboration of the Year 2013 IMPACT on a Family We assisted a father and two children ages 12 and 18 both with autism We helped the parent get the support and information he was seeking primarily related to transition services for his older son By connecting him to the appropriate state and community agencies that provide services to individuals with developmental disabilities the youth received life and social skills and safety training in the home setting under the supported living arrangement program vocational rehabilitation services for job training skill development and legal resources on guardianship We also connected the father to two parent matches with Hispanic parents of children with autism who are trained parent mentors The father shared his appreciation When I contacted Family TIES it changed my life I received a lot of support and information which helped get my children the services they need Connecting me with another family that has a child with autism was a great relief IMPACT Family Provider Communications 7 1 Not Useful Families rate the usefulness of the support information resources they received from the NV F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 CONTACT Family TIES of Nevada Reno Office 3100 Mill Street Suite 117 Reno NV 89502 Phone 775 823 9500 1 2 8 6 Somewhat Useful 41 4 15 7 Extremely Useful Useful Total Families Served 4 008 Total Professionals Served 2 717 Web Visits 69 933 27 1 Very Useful Las Vegas Office 6130 Elton Avenue Suite 100 Las Vegas NV 89107 Phone 702 740 4200 FY2013 F2F OUTREACH 2 Materials Disseminated 8 189 Contact Melanie Kauffman GPC mkauffman familytiesnv org CSHCN Helpline 866 326 8437 Trainings 112 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 38 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family TIES of Nevada N E V A D A  Family TIES of Nevada is a statewide nonprofit organization established in 2001 an...
F2F NH Family Voices As the F2F NH Family Voices provides free technical assistance and emotional support to families of CSHCN and the professionals who serve them Our resources include a lending library publications support groups online training center and links to other resources HIGHLIGHT Schools Medicaid CSHCN in NH1 54 569 children 19 0 15 265 children have inadequate insurance 11 706 children have conditions that consistently affect their activities 16 056 do not receive familycentered care In the process of making a rule change NH Department of Health and Human Services DHHS created a tenuous situation for families who were allowing their child s school to bill their Medicaid for medically necessary services under the Medicaid to Schools provision The newly implemented rule allowed the denial of Duplicative Services leaving it unclear if families would be able to access services such as PT OT Speech nursing etc outside of the school through their Medicaid coverage When the rule committee declined to acknowledge the confusion families began to consider refusing school access to their Medicaid thus leaving a potential hole of thousands of dollars within NH School budgets A committee consisting of NH Family Voices and other partners The Parent Training and Information Center NH Association of Special Ed Administrators Disabilities Rights Center Developmental Disabilities Council MSBT a private company providing Medicaid Billing for schools and the NH School Administrators Association worked to educate legislators of this issue resulting in new legislation The bill faced challenges around family privacy but with effective teamwork groups came to an agreement allowing families access to the needed services without giving up their privacy Work from all parties resulted in an amendment clarifying that only a list of related services would be shared by school systems with DHHS and that such services were not considered duplicative if they were deemed medically necessary by a physician The bill successfully passed the house and will now go back to the Senate We are expecting it to pass and be signed by our Governor a win for families and for the system IMPACT Service Navigation IMPACT on a Family Families rate the usefulness of the support information resources they received from the NH F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 3 3 Not Useful
F2F  NH Family Voices As the F2F, NH Family Voices provides free technical assistance and emotional support to families of...
N E W F2F Statewide Parent Advocacy Network of NJ SPAN Family Voices NJ SPAN s F2F provides information and support that families of CSHCN need to effectively partner in decision making at all levels to achieve the MCHB six core outcomes for their children We work towards better health care systems in NJ and tackle critical issues such as health promotion and prevention managed care and other insurance SSI early intervention screening medical home transition and health disparities In addition to family to family support families can access recorded workshops a website and a wealth of materials in English and Spanish J E R S E Y HIGHLIGHT Family Led Screening Training and Family Support CSHCN in NJ1 294 346 children 14 4 115 361 children have inadequate insurance 71 458 children have conditions that consistently affect their activities 101 738 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family Through our Statewide Community of Care Consortium for Children with Special Healthcare Needs SPAN facilitates an Early and Continuous 31 7 Screening Workgroup that is focused on enhancing early screening using validated tools and connecting families to immediate support Last year 20 3 SPAN trained 195 staff of 15 Federally Qualified Health Centers as well as pediatric and family residents at RWJ Medical School Outcomes included 10 6 statistically significant increases in awareness about the importance of CSHCN CSHCN without developmental screening and community resources staff understanding of with CSHCN Adequate Adequate Overall Insurance Insurance the benefits of using AAP screening guidelines and recommended tools and intention to use what was learned SPAN also provided diverse Family Resource Specialists at over 18 community based quick peek screenings hosted by Children s Specialized Hospital helping underserved immigrant low literacy limited English proficient families to access immediate parent to parent support make follow up evaluation appointments and get connected to community based resources IMPACT on a Family Samuel Estrada was diagnosed at an early age and received early intervention EI services because of early developmental screening His Spanish speaking family was part of a parent support group led by two doctors who are part of SPAN s network As he transitioned from EI he still showed some delays and jargon language When the school district denied him special education services his doctors connected his family to SPAN s F2F We helped the family request an independent evaluation but the district refused and filed due process against the family With our support at the mediation meeting and help from his medical home the evaluations were completed and he received appropriate preschool special education services Today Samuel is thriving and his jargon language is gone At our last meeting with the family he recited the Pledge of Allegiance to our Family Resource Specialist clearly and with pride as he laid his hand on his chest IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the NJ F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 1 2 4 0 Useful 9 0 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 197 715 Total Professionals Served 70 685 Web Visits 97 661 Materials Disseminated 348 170 Trainings 340 87 0 Extremely Useful CONTACT SPAN of NJ 35 Halsey St Fourth Floor Newark NJ 07102 Phone 973 642 8100 Toll free 800 654 SPAN Fax 973 642 8080 Website http www spanadvocacy org Contact Mercedes Rosa mercedesrosa spannj org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 40 FY2014 Activities Accomplishments of Family to Family Health Information Centers
N E W  F2F  Statewide Parent Advocacy Network of NJ  SPAN  Family Voices-NJ   SPAN   s F2F provides information and suppor...
F2F Parents Reaching Out Parents Reaching Out supports all families throughout New Mexico including those who have children with disabilities or may be at risk The F2F staff work closely with families and professionals giving them knowledge and tools to make informed decisions around health care We provide training opportunities resources and information at no cost As a statewide organization we value our community partners Together we are able to build strong support for families and communities HIGHLIGHT Blue Cross Blue Shield Partnership We participate on a variety of committees and have developed numerous partnerships across the state We are particularly proud of a collaboration with Blue Cross and Blue Shield of NM to educate families on Centennial Care Affordable Care Act and Medical Homes In 2013 we hosted mini conferences in Gallup and Albuquerque In collaboration with our partners we provided high quality training materials and resources to the many families who participated Following these conferences focus groups met to discuss the usefulness of the conference follow up issues and impact on participants As a result of the conference 100 of family participants felt that they could make more informed decisions about their family s health care Due to the success of the conferences we have received additional funding to hold mini conferences in Taos and Roswell in 2014 N E W CSHCN in NM1 M E X I C O 70 725 children 13 8 22 587 children have inadequate insurance 18 713 children have conditions that consistently affect their activities 27 403 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 36 0 23 2 14 8 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family When you find out your child has a diagnosis there is no guide book that tells you all the things you should know about health care early intervention or educational systems Parents Reaching Out outlined a path of supports and services available in New Mexico and walked me through navigating that path It has been extremely helpful getting connected to these resources There is still so much to learn but Parents Reaching Out has gotten me off to a good start and I know they are available to support me if I have questions along the way Gabriel C IMPACT Service Navigation FY2013 F2F OUTREACH 2 Total Families Served 10 610 Total Professionals Served 5 264 Materials Disseminated 10 929 15 4 Families rate the usefulness of the support information resources they received from the NM F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 Extremely Useful 30 8 Very Useful 53 8 Useful CONTACT Parents Reaching Out PRO 1920 B Columbia Drive SE Albuquerque NM 87106 Phone 505 247 0192 Toll Free 800 524 5176 Fax 505 247 1345 Website http parentsreachingout org Contact Mayline Jaramillo mjaramillo parentsreachingout org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 41
F2F  Parents Reaching Out Parents Reaching Out supports all families throughout New Mexico, including those who have child...
F2F Parent to Parent of NYS N E W Parent to Parent of NYS which began in 1994 is a statewide not for profit organization established to support and connect families of individuals with special needs The 13 offices located throughout NYS are staffed by Regional Coordinators who are parents or close relatives of individuals with special needs The F2F offers families information on health topics connections with Health Care Resource Parents referrals to community resources and trainings on health care financial issues collaborating with professionals and other health care topics Y O R K HIGHLIGHT Entitlements Benefits Workshop This workshop includes information on Medicaid CHIP the ACA Social Security SNAP WIC and utilities assistance Working primarily through two special needs schools one for students in Pre K through sixth grade and the other for students aged 14 21 a total of 52 families and professionals were provided with information regarding these resources over the last year The presentation has been very well received and additional sites are requesting this workshop Most recently F2F HIC staff has been co presenting with staff from a comprehensive clinical services agency for individuals with autism F2F HIC staff present on entitlements benefits and the ACA the staff from the clinical agency provides an overview of autism insurance coverage in NYS A professional who works with families of CSHCN commented The presenter was very helpful and CSHCN in NY1 660 565 children 15 0 239 388 children have inadequate insurance 182 675 children have conditions that consistently affect their activities 279 008 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 30 6 17 6 9 1 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance informative for the parents that attended this meeting I have learned a lot and will share this information with the service coordinators at my agency IMPACT on a Family Overwhelmed by the prospect of an extensive hand surgery for her six month old son at an out of state Shriner s Hospital an Upstate NY mom was further stressed when she was unable to locate an orthopedic specialist willing to handle the necessary follow up care in her area The child s grandmother reached out to Parent of NYS for assistance Our F2F HIC Coordinator contacted all three major medical centers in the mom s region to inquire about the possibility of follow up care The facilities asked for information on the child s Medicaid benefits information that was difficult for the family to provide Working as a conduit of information between the family and hospital F2F staff was able to talk with the director of orthopedic services at one of the hospitals An orthopedic hand specialist affiliated with that hospital agreed to provide follow up care for this infant regardless of insurance status Best yet the physician had previously worked with the surgeon at Shriner s Hospital The family very relieved and grateful for the assistance shared the following Yes indeed it is a good day My daughter was ecstatic when I gave her the news Thanks again for all your help Lots of kudos to your staff CONTACT Parent to Parent of NYS 500 Balltown Road Schenectady NY 12304 Phone 518 381 4350 Toll Free 800 305 8817 Fax 518 393 9607 Website http parenttoparentnys org Contact Lara Turney lturney ptopnys org 1 2 FY2013 F2F OUTREACH 2 Total Families Served 17 754 Total Professionals Served 6 174 Web Visits 33 863 Materials Disseminated 3 447 Trainings 264 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 42 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Parent to Parent of NYS  N E W  Parent to Parent of NYS, which began in 1994, is a statewide not for profit organizat...
F2F Exceptional Children s Assistance Center Inc North Carolina s Family to Family program within the Exceptional Children s Assistance Center ECAC provides information and support to NC families who have CSHCN and the professionals who serve them Our goal is to help families navigate services and make informed health care decisions We connect families for peer support as well as work with policymakers to design effective programs and to assist in identifying successful service delivery models HIGHLIGHT Care Notebook The Care Notebook is a tool for families that gives the family a sense of mastery in overseeing their child s health care by providing a framework for stories health data and history of their child Family enthusiasm trainthe trainer activities and the new emphasis on care coordination within the ACA and Medicaid programs have increased knowledge of the Care Notebook so that it is now being used broadly across NC Pediatric ICU staff and administrators Neonatal ICU staff and administrators Katie Beckett providers and hundreds of English and Spanish speaking families worked on creating the most recent revision of the notebook which is now in production The Care Notebook is available in Spanish and English and can be accessed online as a CD and in a print version N O R T H C A R O L I N A CSHCN in NC1 389 439 children 17 2 233 294 children have inadequate insurance 94 747 children have conditions that consistently affect their activities 127 752 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 33 3 22 5 14 8 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family Ashley contacted ECAC asking for support education and assistance Her daughter has a severe neurological disorder that made oral feeding very difficult With the support of her daughter s pediatrician the family located a feeding program that was successful in helping her daughter to finally gain weight After her daughter graduated from the program Ashley attempted to advocate for feeding training for the preschool staff She met with resistance The school recommended a plan that would have forced her daughter into a more restrictive school setting rather than providing appropriate related services and health supports in the preschool The NC F2F was able to help Ashley understand IDEA requirements for medically fragile children like her daughter and connected her with the appropriate regional school nurse consultant who translated the child s medical needs to staff in her preschool setting NC F2F facilitated meetings with team members to implement an appropriate program and has provided additional information and support as requested by Ashley IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the NC F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 17 6 14 0 Extremely Useful Useful 68 4 Very Useful 1 2 FY2013 F2F OUTREACH 2 Total Families Served 2 766 Total Professionals Served 2 900 Web Visits 57 195 CONTACT Exceptional Children s Assistance Center 907 Barra Row Suites 102 103 Davidson NC 28036 Phone 704 892 1321 Parent Info Line 800 962 6817 Fax 704 892 5028 Website http www ecac parentcenter org Contact Marlyn Wells marlynwells gmail com National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 43
F2F  Exceptional Children   s Assistance Center, Inc. North Carolina   s Family-to Family program within the Exceptional C...
F2F Family Voices of North Dakota N O R T H D A K O T A Family Voices of North Dakota FVND began assisting families of CSHCN in 1996 and since that time has become an established resource for families and professionals seeking to improve care for CSHCN The F2F provides assistance to families in accessing services and resources and helps them partner with providers and caregivers We work with families providers public and private agencies and advocacy or support groups to promote family centered care and medical homes CSHCN in ND1 19 748 children 13 9 6 768 children have inadequate insurance 4 394 children have conditions that consistently affect their activities 6 067 do not receive family centered care HIGHLIGHT Parent Leadership Institute For the past 8 years FVND has partnered with the Federation of Families for Children s Mental Health Designer Genes Early Intervention North Dakota PTI Children s Special Health Services Title V Pathfinder Parent Center and the State Council on Developmental Disabilities to plan and run a Parent Leadership Institute This weekend event for 25 participants provides training on understanding systems of care for CSHCN and navigating services using the National Family Voices Leadership Guide as a resource Participants are also provided guidance on leadership and communication styles and helped to establish goals for the coming year While the present model has been a success tweaks are being made to offer the course over a period of several months to promote ongoing mentorship leadership and to extend he sections on how to impact systems As a result of our institute many participants have become leaders starting support groups developing a state Hands and Voices chapter advocacy for deafness community impacting autism supports increasing recreational opportunities for CSHCN in their communities testifying about legislation on many issues becoming a better advocate for their own child and mentoring other parents We are currently applying for other funds to increase this leadership training provide better follow up to participants and improve data tracking on how systems are impacted by providing this institute for families IMPACT on a Family Carter has Sotos Syndrome often called Cerebral Gigantism which is a genetic condition causing physical overgrowth during the first years of life often accompanied by delayed motor cognitive and social development We affectionately call him our gentle giant because that describes his overall demeanor although as with other children with Sotos he can be very aggressive Joining the parent group run by Family Voices YOU Nique Opportunities has opened up many opportunities for our family socially Previously we didn t do as much socially because we were tired of the looks and comments from people who didn t understand Carter s behavior The YOU Nique program has given us opportunities to participate in many great events and to meet people who do not judge or ridicule and that has meant the absolute world to our family With YOU Nique Opportunities Family Voices provides something that this community has been missing and in desperate need of for way too long I don t know where our family would be without Family Voices Thank you Julie N IMPACT Family Confidence FY2013 F2F OUTREACH 2 Families rate the usefulness of the support information resources they received from the ND F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 Total Families Served 5 582 9 6 Somewhat Useful Total Professionals Served 6 063 Materials Disseminated 36 932 27 7 Useful Trainings 120 0 20 37 2 Very Useful 40 25 5 Extremely Useful 60 80 100 CONTACT Family Voices of North Dakota P O Box 163 Edgeley ND 58433 Phone 701 493 2634 Toll Free 888 522 9654 Fax 701 493 2635 Website http fvnd org Contact Donene Feist fvnd drtel net 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 44 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family Voices of North Dakota  N O R T H D A K O T A  Family Voices of North Dakota  FVND  began assisting families o...
F2F Family Voices of Ohio Family Voices of Ohio helps families of CSHCN to learn about and access services and supports to assure optimum health care for their children We collaborate with providers state agencies and other key stakeholders to raise awareness of the needs of families and to address gaps in systems and policies that adversely affect children with special health care needs All our staff and board members are parents of children and adults who have special needs and represent a wide variety of children health conditions families and communities from every region in Ohio HIGHLIGHT The Ohio Respite Coalition The Ohio Respite Coalition is a statewide collaboration among family members caregivers advocates respite providers agencies community groups and state and local government officials who work to educate advocate and promote access to respite options for people who care for a loved one CSHCN in OH1 O H I O 483 467 children 17 8 145 651 children have inadequate insurance 147 839 children have conditions that consistently affect their activities 139 014 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 28 0 18 3 12 6 Our Health Information Specialist Jessica chairs the government CSHCN CSHCN without with relations committee of the Ohio Respite Coalition and worked with CSHCN Adequate Adequate Overall Insurance Insurance the Ohio Department of Medicaid to implement a Respite Waiver for CSHCN who are covered by managed care The waiver began serving families on January 1 2014 We are currently working to increase awareness and access to respite by increasing the knowledge of the word respite and developing a standard method of training and certifying respite workers Our vision is that all caregivers regardless of location or circumstance will have access to quality person centered respite services and be able to use them in a timely and effective manner IMPACT on a Family FV of OH received a phone call from a mom whose son was starting preschool and she did not have a way to get him there We called her service coordinator in the Help Me Grow program and together we were able to arrange for this family to receive support through the County Board of Developmental Disabilities Family Support Services program We set up transportation to preschool from United Disability Services while we worked on adding transportation services to the IEP Additionally we contacted the Medicaid Care Coordinator to approve extra transportation for doctor appointments IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the OH F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 1 4 Somewhat Useful FY2013 F2F OUTREACH 2 Total Families Served 3 470 Total Professionals Served 1 090 Web Visits 21 669 Materials Disseminated 2 794 30 0 Extremely Useful 17 1 Useful 51 4 Very Useful CONTACT Family Voices of Ohio 6555 Busch Blvd Suite 112 Columbus OH 43229 Phone 419 251 8190 Toll Free 877 322 2200 Ext 8190 Website http www familyvoicesohio org Contact Carol Keltner chkeltner PremierHealth com 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 45
F2F  Family Voices of Ohio Family Voices of Ohio helps families of CSHCN to learn about and access services and supports t...
F2F Oklahoma Family Network O K L A H O M A The Oklahoma Family Network OFN Family to Family Health Information Center informs and connects individuals with special health care needs and disabilities their families and professionals to services and supports in their communities OFN provides opportunities for individuals and families to strengthen their communities through leadership development and volunteering HIGHLIGHT 2014 Annual Joining Forces Family Professional Partnership Conference We work with our partner agencies to plan and provide an annual family professional partnership conference This is a unique conference as it brings together many of our state agencies and family leaders This year our theme was A Good Life and we were thrilled to have Michelle Reynolds PhD of the Missouri Family to Family Network UMKC Institute for Human Development and University Center on Excellence in Developmental Disabilities who is a sibling of a CSHCN as our keynote speaker For the conference we produced a short video which features individuals answering the question A Good Life Is The video is available on our website The conference featured breakout sessions where we discussed and mapped out life courses The conference was a huge success for the 141 attendees and many new partnerships were formed CSHCN in OK1 161 799 children 17 6 51 169 children have inadequate insurance 38 296 children have conditions that consistently affect their activities 52 325 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 31 1 22 2 15 1 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family You truly never know how someone feels until you walk in their shoes Sitting in a NICU cubicle with your undiagnosed baby is the hardest thing my husband and I have ever had to do Day in and day out you are surrounded by medical staff medical equipment medical clothing medical terminology buzzing beeping alarming You are helpless uncertain of the future and feeling a flood of emotions all at once fear anger weakness selfishness worthlessness uncertainty sadness depression anxiety It s overwhelming Then one day someone walks in normal everyday clothing smiling puts their hand on your shoulder and for once asks What can I do for YOU For us that person was Ellyn of the Oklahoma Family Network She was our weekly release our connection to normalcy She understood and didn t ask for an explanation a timeline a diagnosis She just offered an ear at a time when we were so lost I honestly don t know what I would have done during those long 77 days without looking forward to seeing Ellyn on Tuesday afternoons and having pie and coffee She had walked in my shoes and knew what I needed FY2013 F2F OUTREACH 2 IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the OK F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 1 2 1 2 Somewhat Useful Useful 13 6 Total Families Served 6 246 Total Professionals Served 8 368 Materials Disseminated 6 894 Trainings 700 49 4 Extremely Useful 35 8 Very Useful CONTACT Oklahoma Family Network 800 NE 15TH Street Suite 516 Oklahoma City OK 73104 Phone 405 271 5072 Toll Free 877 871 5072 Website http oklahomafamilynetwork org Contact Joni Bruce Joni bruce oklahomafamilynetwork org Heather Pike heather pike oklahomafamilynetwork org National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 46 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Oklahoma Family Network  O K L A H O M A  The Oklahoma Family Network  OFN  Family-to-Family Health Information Cente...
F2F Oregon Family to Family Health Information Center The Oregon Family to Family Health Information Center provides information to families who are navigating the complex world of special health care needs We are family members ourselves who have firsthand experience raising a child or youth with a chronic health condition developmental delay disability or emotional behavioral challenges O R E G O N CSHCN in OR1 119 187 children 13 7 42 944 children have inadequate insurance 34 542 children have conditions that consistently affect their activities 40 630 do not receive familycentered care HIGHLIGHT Regional Family Gatherings in Rural Latino and Slavic Communities Since 2011 the Oregon Family to Family Health Information Center has conducted 31 Regional Family Gatherings throughout the state to exchange information ideas and support These gatherings have taken place in rural communities and with Latino and Russian families in both metropolitan and rural Oregon In order to do this work the OR F2F HIC has developed a unique map of the state that identifies key groups who will partner with us to offer these gatherings in locations that are familiar and welcoming to families Our map a 5 x 3 map of the state pinned to a wall in the office was first populated with tags representing every known parent leader in the state Using word of mouth we contacted dozens of groups like the Autism Society of Oregon and The Arc of Oregon as well as groups that meet informally in churches and playgrounds and everything in between We included parent groups from the health developmental disabilities and mental health domains as well as those focused on advocacy recreation or other topics Gathering the names of contact persons from agencies and organizations that touch families lives in some way we filled in our map and built a database Now for almost each of Oregon s 36 counties we have identified a network consisting of family groups and helpful professionals such as Disabilities Coordinators at Head Start Early Intervention Teachers Title V Nurse Care Coordinators Community Developmental Disabilities Case Managers and many others In the most rural part of Oregon even the delivery drivers of home medical equipment have participated in our network Information about these organizations is provided specific to the region where the Family Gathering is taking place We connect with an organization to host the gathering and they locate a meeting place circulate publicity organize registration and let us know a focus for the meeting Typical topics include Resources and More Becoming Your Child s Health Advocate and Planning for a Healthy Transition We bring light refreshments and plenty of resource materials Groups are generally between 3 and 15 participants As a result of these gatherings families connect with one another and learn about support and health related programs Through the meetings we also are able to provide our state s Title V CYSHCN program with feedback about families experiences During the launch of our state s Health Insurance Marketplace these Regional Family Gatherings were instrumental in providing information about the ACA and in clearing up myths and misconceptions One family member from a frontier county remarked I don t think we really knew what Obamacare was until you came out here She left the event with a supply of explanatory brochures about Cover Oregon and Health Care Reform to distribute to her friends FY2013 F2F OUTREACH 2 Total Families Served 4 344 IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the OR F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 Total Professionals Served 1 120 1 5 Not Useful 1 5 Somewhat Useful Web Visits 16 375 Materials Disseminated 2 186 CONTACT 1 2 10 8 Useful 0 44 6 Very Useful 20 40 41 5 Extremely Useful 60 80 100 Oregon Family to Family Health Information Center 707 SW Gaines Street CDRC Portland OR 97239 3011 Phone 503 494 0865 Toll Free 855 323 6744 Fax 503 494 2755 Website http www oregonfamilytofamily org Contact Tamara Bakewell bakewell ohsu edu National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 47
F2F  Oregon Family-to-Family Health Information Center  The Oregon Family-to-Family Health Information Center provides inf...
F2F Parent Education Advocacy Leadership Center P E N N S Y L V A N I A The Parent Education Advocacy Leadership Center PEAL was established in October 2005 as an organization of parents of children with disabilities reaching out to assist other parents of children with disabilities and special health care needs and professionals The PEAL F2F provides individual assistance and training on access to health care insurance and community support services statewide HIGHLIGHT Parent Advocate Summit This summer the PEAL Center hosted a weekend Parent Advocate Summit reuniting trained Parent Leaders Our goal was threefold 1 to establish an ongoing statewide network of parent leaders advocates 2 to empower leaders to engage in collective advocacy and 3 to engage parents in learning opportunities in order to help Parent Leaders develop a personal advocacy plan The energy of the parent leaders was revitalizing as they brainstormed networked and galvanized their plans Individuals identified issues of concern and laid out steps to accomplish their stated objectives Thirty five parent leaders attended the Summit accompanied by 47 family members totaling 82 attendees CSHCN in PA1 469 906 children 17 0 119 132 children have inadequate insurance 116 309 children have conditions that consistently affect their activities 149 823 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 36 2 16 5 8 6 Feedback It was inspiring to hear what other parent advocates were working on and beneficial to see the goals they focused on This helped me to see what the world of the possible was for me We are all advocates thanks to the wonderful training we ve received from PEAL CSHCN without Adequate Insurance CSHCN with Adequate Insurance CSHCN Overall Video segments from the Summit that have been incorporated into our Online IEP Mini Series an E Learning Course can be found on our website IMPACT on a Family We assisted a single mother of a child with a rare genetic disorder that impacted his ability to participate in activities With assistance in preparing an Individual Health Care Plan guidance has now been provided to those working with the boy to safely incorporate him into activities with his peers We helped the family to better communicate with their physician to provide needed supporting documentation for eligibility as well as clarification about the medical condition to people in the community who are involved with the child We connected the family to additional resources to help with educational issues Thank you for all of your help I did not know what to do FY2013 F2F OUTREACH 2 Total Families Served 9 164 Total Professionals Served 8 044 Web Visits 67 161 Materials Disseminated 59 520 IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the PA F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 3 3 Not Useful 5 4 Somewhat Useful 14 1 Useful 51 1 Extremely Useful 26 1 Very Useful CONTACT PEAL Center 1119 Penn Avenue Suite 400 Pittsburgh PA 15222 Phone 412 281 4404 Toll Free 866 950 1040 Fax 412 281 4408 Website http www pealcenter org Contact Liz Healey lhealey pealcenter org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 48 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Parent Education   Advocacy Leadership Center  P E N N S Y L V A N I A  The Parent Education   Advocacy Leadership Ce...
F2F RI Parent Information Network R H O D E I S L A N D Founded in 1991 the Rhode Island Parent Information Network RIPIN is a statewide nonprofit organization with a collective programmatic reach that extends to every Rhode Island community reaching families through schools associations and agencies The F2F project provides health care information family to family support and leadership development for families of children with special health care needs We work directly with organizations institutions and communities to address gaps and deficiencies so that individuals parents and families are better served and viewed as equal partners 39 170 children 17 3 11 812 children have inadequate insurance 10 055 children have conditions that consistently affect their activities 12 997 do not receive familycentered care HIGHLIGHT Support Group Facilitator Training with Technical Assistance Follow up CSHCN Whose Conditions Cause Financial Problems for the Family RIPIN s Support Group Facilitator Training was created to educate and build skills for parents and professionals who are interested in started or revamping a support group We begin this 4 hour training with an icebreaker activity and then delve into a discussion on what types of groups the participants are interested in This guides the training to be specific to the participants needs The goals of this particular training are for the upcoming facilitators to learn how to listen more effectively be more self confident and identify strategies to enhance support groups The trainer continues to support and follow up with the trainee during the start up of the group and to mentor them on how to develop the group so it becomes self sustainable CSHCN in RI1 29 2 14 7 7 4 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family My daughter Aileen was diagnosed with hydrocephalies and was unable to walk talk or grab anything with her hands She was legally blind When she was six the pediatrician and the neurologist told me that there was nothing else to do for her as she was dying slowly At that time I had just started working for the Family Voices program as a Bi lingual Resource Specialist The director of the program supported me and my older daughter in this difficult time She was there day and night calling and visiting us She taught me to be strong and brave and how to keep going after Aileen was gone Two years after my baby passed away I am still working for the Family Voices Program as a Bi lingual Resource Specialist I assist Spanish speaking families who are in need of resources and family support Through a training I leaned to be a Support Group Facilitator and am now the facilitator of the Spanish support group for families who have children with special health care needs which meets monthly Around eleven to fifteen families participate in the group Thanks to the support I received from Family Voices I can assist other families My older daughter is always at the Spanish support group helping brothers and sisters who have siblings with special needs FY2013 F2F OUTREACH 2 Total Families Served 13 046 Total Professionals Served 6 658 Web Visits 40 763 Materials Disseminated 63 405 1 2 CONTACT RIPIN 210 Pontiac Avenue Cranston RI 02920 Phone 401 270 0101 Toll Free 800 464 3399 Fax 401 270 7049 Website http www ripin org Contact Tara Townsend townsend ripin org 5 7 Not Useful 5 7 Somewhat Useful IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the RI F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 34 9 Extremely Useful 22 6 Useful 31 1 Very Useful National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 49
F2F  RI Parent Information Network  R H O D E I S L A N D  Founded in 1991, the Rhode Island Parent Information Network  R...
F2F Family Connection SC S O U T H C A R O L I N A Family Connection SC is a statewide nonprofit organization that links families of children with special health care needs and disabilities with resources support and education We provide support to parents with a child or family member with any special health care need such as an upcoming surgery developmental delays premature birth physical limitations and all diagnoses including autism asthma ADHD and cerebral palsy Our support for families includes a family to family network statewide offices and a host of programs to educate inspire and empower families and their children to live rich fulfilling lives in spite of many challenges HIGHLIGHT Hopes and Dreams Annual Conference Our 2014 annual conference Hopes Dreams was attended by more than 400 parents and professionals who care for children with special needs This is a 2 day conference offering over 64 workshops and providing resources from 40 exhibitors Workshops explored the issues and challenges families face in caring for children of all ages with developmental disabilities chronic illnesses and long term health needs Topics ranged from Autism 101 and parent wellness to managing anxiety and feeding the picky eater The conference featured keynote speaker Julie Petty of Fayetteville AR Ms Petty who has cerebral palsy is a state leader in the self advocacy movement encouraging people with disabilities to take greater control of their lives CSHCN in SC1 177 157 children 16 5 64 036 children have inadequate insurance 47 782 children have conditions that consistently affect their activities 61 000 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 36 6 22 4 12 4 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family Not long after Millie was born she was diagnosed with mosaic Down syndrome My husband Dan learned about a Down syndrome support group at Family Connection of SC He felt we should go and learn more about what we were facing It was at this meeting surrounded by other parents on our same journey that I first learned my daughter can be anything she wants to be These parents shared pictures and stories of the many things their children were doing sports school art music so many possible activities It was a meeting of hope for me The uncertainties of the future didn t seem so scary after talking to these families To this day Family Connection continues to provide the encouragement and information we need as my daughter pursues her dreams IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the SC F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 1 4 Not Useful 2 8 Somewhat Useful 11 8 Useful 0 FY2013 F2F OUTREACH 2 59 7 Very Useful 20 CONTACT 40 60 Total Families Served 13 999 24 3 Extremely Useful 80 Total Professionals Served 2 820 Web Visits 28 650 100 Materials Disseminated 269 566 Trainings 346 Family Connection South Caroline 2712 Middleburg Dr Suite 103 Columbia SC 29204 Tel 800 578 8750 Fax 866 420 4082 Website http www familyconnectionsc org Contact Amy Nienhuis anienhuis familyconnectionsc org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 50 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family Connection SC  S O U T H C A R O L I N A  Family Connection SC is a statewide nonprofit organization that link...
F2F South Dakota Parent Connection South Dakota Parent Connection Inc SDPC was founded in 1985 by a group of dedicated parents and professionals to provide training and information statewide to meet the needs of parents and families caring for individuals with disabilities The F2F project provides information and guidance around health issues to families and the professionals who serve them and improves access to services and resources for CSHCN HIGHLIGHT Workshop Supporting Native American Families with CSHCN S O U T H D A K O T A CSHCN in SD1 24 415 children 12 5 8 003 children have inadequate insurance 7 334 children have conditions that consistently affect their activities 9 132 do not receive family centered care Native American families or Indian as they prefer to be called are often outside of mainstream information systems that connect other families with CSHCN to available services and supports In collaboration with National Family Voices SDPC adapted a popular Accessing Services and Supports for CSHCN presentation for Native American Indian families to provide information on programs and resources that can support CSHCN birth to adulthood including public private insurance and the Marketplace SDPC and National Family Voices presented this workshop at the National Indian Education Association Conference SDPC also provided this workshop at the SD Indian Education Conference These presentations were very popular and we received requests to present at two additional statewide events conferences for Indian families the Lakota Nations Invitational Education Conference and the Oceti Sakowin Education Consortium Conference In all 122 family members and professionals participated in these workshops Evaluation ratings were very positive over 90 rated the quality of the workshop as Good Very Good or Excellent IMPACT on a Family Alejandra was born with hydranencephaly a rare condition in which the brain s cerebral hemispheres are absent When Alejandra s mother Natasha connected with SD Parent Connection we sent her one of our resources the Folder of Information of Life Experiences FILE I love the FILE It s especially helpful when we travel to medical appointments SDPC introduced the family to the Dare to Dream Conference which the entire family attended last year We met lots of people We see them in the community every day SDPC helped us create a network of support and relationships for our entire family Natasha an RN with Indian Health Services refers other families of children with special needs to SDPC She and her family hope to become involved at the state and national level advocating for other families With help from SDPC both Natasha and Raymon Alejandra s father have not only improved life for their own family they are becoming leaders for other families FY2013 F2F OUTREACH 2 Total Families Served 4 970 Total Professionals Served 5 317 Web Visits 11 255 Materials Disseminated 34 047 Trainings 105 IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the SD F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 2 2 Somewhat Useful 26 7 35 6 Useful Extremely Useful 35 6 Very Useful CONTACT South Dakota Parent Connection 3701 West 49th Street Ste 102 Sioux Falls SD 57106 Phone 605 361 3171 Toll Free 800 640 4553 Fax 605 361 2928 Website http www sdparent org Contact Lisa Sanderson Lsanderson sdparent org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 51
F2F  South Dakota Parent Connection South Dakota Parent Connection, Inc.  SDPC  was founded in 1985 by a group of dedicate...
F2F TN Disability Coalition Family Voices of TN T E N N E S S E E Family Voices of Tennessee FVTN operates the F2F as a member organization of the Tennessee Disability Coalition an alliance of 47 organizations that promotes the full and equal participation of people with disabilities in all aspects of life The F2F assists families as they navigate public and private health systems and insurance plans including TennCare and commercial plans and works with families health care providers public and private agencies and advocacy or support groups to promote family centered care and medical homes for CSHCN CSHCN in TN1 255 692 children 17 2 63 135 children have inadequate insurance 70 890 children have conditions that consistently affect their activities 81 696 do not receive familycentered care HIGHLIGHT Family Centered Care Workshops Transition Booklet CSHCN Whose Conditions Cause Financial Problems for the Family Family Voices of Tennessee has trained 27 parents family members in numerous Family Centered Care workshops across the state These workshops teach families about what Family Centered Care is and how to partner with their child s health care provider Trainings are available statewide upon request Participants leave with clear follow up activities and have scheduled calls with FVTN staff A transition booklet called Dude Where s My Transition Plan was developed by FVTN in collaboration with KY F2F HIC in 2012 This booklet was updated by FVTN and STEP TN s PTI in February 2014 Three new pages were added including a page on allergies internet safety and additional information regarding transportation 500 copies have recently been printed and are being disseminated The booklet is also available on the FVTN website 37 1 20 1 13 6 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family A mother who attended our first FCC workshop used the skills she learned from the workshop and the follow up coaching calls to better engage with her son s pediatrician With new ideas of how to partner and communicate with her son s physician she was able to have a very successful visit She stated that the communication was improved and that her son received a new diagnosis from the visit She was prepared with written notes and questions for her physician She felt empowered She stated she now attends every appointment with notes regarding her son s behaviors and questions she has to ensure good communication takes place IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the TN F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 11 5 Somewhat Useful 0 Total Families Served 5 518 Total Professionals Served 8 100 Materials Disseminated 833 9 6 23 1 59 7 Very Useful 55 8 Extremely Useful Very Useful Useful 20 40 60 80 FY2013 F2F OUTREACH 2 100 CONTACT TN Disability Coalition Family Voices of TN 955 Woodland Street Nashville TN 37206 Phone 615 383 9442 Toll Free 888 643 7811 Fax 615 383 1176 Website http www tndisability org Contact Belinda Hotchkiss belinda_h tndisability org 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 52 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  TN Disability Coalition  Family Voices of TN  T E N N E S S E E  Family Voices of Tennessee  FVTN  operates the F2F a...
F2F Texas Parent to Parent Texas Parent to Parent TxP2P is committed to improving the lives of Texas children who have disabilities chronic illness and or special health care needs The F2F at TxP2P offers training resources and support around health issues for parents family members professionals and community members to better support children with disabilities or special health care needs throughout their lives Trainings and presentations in English and Spanish are available at no charge to professionals parents and parent groups across Texas HIGHLIGHT Pathways to Adulthood Program When children with disabilities chronic illnesses or other special health care needs approach adulthood parents face many issues in assisting their young adult to start their life after school Pathways to Adulthood PTA assists families to envision a good life for their sons and daughters with disabilities after graduation and provides support information and tools for carrying out this vision We offer 1 1 peer mentoring 1 1 assistance from staff trainings networks of support support groups annual conference workshops online resources and a listserv on transition Medicaid waivers Feedback from a recent workshop participant The strongest feature was the presenter s expertise personal experience and encouragement Comprehensive overview such as this of all transition issues should be mandatory for all parents T E X A S CSHCN in TX1 919 876 children 13 4 286 736 children have inadequate insurance 247 587 children have conditions that consistently affect their activities 342 226 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 39 0 24 2 13 1 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance IMPACT on a Family Our PTA Program has provided support for 4 families and several more who are in the beginning phases to create fully functioning Networks of Support around individuals with a disability and their family These personal networks provide a structure of on going support for a person with a disability during the course of that person s life and even after the parents have passed away or are no longer able to care for them The idea of personal networks comes from a parent organization in Vancouver called PLAN Planned Lifetime Advocacy Network As a result of these Networks parents feel less stressed and less anxious about the future have been able to work with their youth s school program more effectively to prepare for transition found jobs for their adult children and one even was able to leave the country on vacation for the first time in 20 years One of our families reported Maverick s network has been together for over three years The best thing that has resulted from the network is our feeling hopeful about Maverick s future We have created a community of people who came together for one purpose i e Maverick and are over time becoming closer to each other more cohesive and more vested in Maverick s futuree TxP2P has created a how to manual for creating Networks which is available on our website IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the TX F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 CONTACT 3 6 Not Useful 7 1 26 2 Extremely Useful Somewhat Useful 25 0 Useful 38 1 Very Useful Texas Parent to Parent 3710 Cedar Street Box 12 Suite 229 230 Austin TX 78705 1449 Phone 512 458 8600 Toll Free 866 896 6001 Fax 512 451 3110 Website http www txp2p org Contact Laura J Warren Laura txp2p org 1 2 FY2013 F2F OUTREACH 2 Total Families Served 15 215 Total Professionals Served 3 501 Materials Disseminated 23 500 Trainings 199 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 53
F2F  Texas Parent to Parent Texas Parent to Parent  TxP2P  is committed to improving the lives of Texas children who have ...
F2F Utah Family Voices The F2F at Utah Family Voices provides families with quality information and resources and expands family professional partnerships to help families make informed decisions We provide information training and guidance We develop and implement strategies for collaboration We conduct activities that are culturally and linguistically relevant to families and professionals around home and community based services and supports and help families assess their potential eligibility for programs and services U T A H HIGHLIGHT Family Involvement in the Medical Home Portal The Medical Home Portal is a comprehensive website that provides reliable information and resources to help families and professionals care for CSHCN The development of the modules about resources and services is a perfect example of parent professional partnership All the information is developed vetted and published by a team that includes staff from the F2F as well as many other families throughout the state and region All partners are committed to keeping the site current so that it can serve as a credible and informative resource for Utah and other states The majority of the family content is written and edited by F2F staff and vetted in collaboration with the Medical Home Portal staff During this year we have seen an increase in page views of 3 from the previous year The For Parents Families section had the highest rate of change in page views this year a 28 61 increase representing access by 12 380 unique visitors spending an average time of 2 14 minutes on a page The portal can be visited at http www medicalhomeportal org CSHCN in UT1 112 278 children 13 0 38 686 children have inadequate insurance 31 788 children have conditions that consistently affect their activities 34 087 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 39 0 28 3 18 0 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT on a Family A family needed to have their son seen at a pediatric specialty clinic and had waited for 7 months to get an appointment The day before the appointment they received a letter indicating that due to changes in the ACO contract the appointment would not be covered by insurance The mom was beside herself when she contacted the F2F for help Her son really needed this appointment and the family could not pay for it out of pocket Our staff worked with the child s two different Health Plans to explain the situation and to look for a solution Through our discussions we discovered that this particular clinic was in fact covered because it was the only pediatric sub specialty clinic of its kind The family expressed their gratitude Thank you for your help and kind concern I really appreciate your reassurance it s good to know that you understand the struggles I ve called and confirmed our appointment THANK YOU THANK YOU THANK YOU 3 1 Useful IMPACT Family Confidence CONTACT Families rate the usefulness of the support information resources they received from the UT F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 1 2 48 4 Extremely Useful 48 4 Very Useful Utah Family Voices 230 West 200 South Suite 1101 Salt Lake City UT 84101 Phone 801 584 8236 Toll Free 800 468 1160 Fax 801 446 7738 Website http www utahfamilyvoices org Contact Gina Pola Money gina ufv gmail com FY2013 F2F OUTREACH 2 Total Families Served 10 267 Total Professionals Served 854 Web Visits 198 877 Materials Disseminated 7 210 Trainings 139 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 54 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Utah Family Voices The F2F at Utah Family Voices provides families with quality information and resources and expands...
F2F Vermont Family Network VFN Vermont Family Network began in July 2008 when the Vermont Parent Information Center VPIC and Parent to Parent of Vermont merged creating an expanded organization to promote better health education and well being for all children and families with a focus on children and young adults with special needs The F2F provides families and individuals with the support they need to make informed decisions connects families with other families helps families navigate health care systems and provides a family voice on boards and committees at the local and state level HIGHLIGHT Medical Education Project The Medical Education Project MEP a well established program has reached thousands of medical professionals in training The program engages medical students at various levels of their education for example 1st year or 3rd year medical students etc and allows them to have direct experience with and feedback from families about their lives challenges and what parts of the system have worked and what have been difficult Reviews from both students and families are consistently very positive with families feeling empowered and many saying that it was therapeutic to share their stories while medical students express excitement about the contact with real patient experience while simultaneously reporting shock and awe at what families face and their dedication and hard work day after day Feedback from a medical student This disease didn t just CSHCN in VT1 21 790 children 17 1 5 825 children have inadequate insurance 5 949 children have conditions that consistently affect their activities 6 825 do not receive family centered care CSHCN Whose Conditions Cause Financial Problems for the Family 30 6 17 3 12 2 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance mean life in a wheelchair for her son It had implications for her entire family In the future I will be able to give my patients a diagnosis with the full knowledge of what it means for a child and family and provide both emotional and physical support when needed IMPACT on a Family Please know that hosting a medical student is a pleasure for us We want to make sure that a new generation of doctors will know how to better help kids and parents facing long term disability It is important they know that the earlier one starts rehabilitation the better We want them to know that there is NO WAY one should just sit and wait for a delay to occur Any student seeing our son and knowing that a portion of his brain is not functioning will understand this and we are happy to see their faces when they learn the story We know they will remember the experience their entire life IMPACT Family Provider Communications Families rate the usefulness of the support information resources they received from the VT F2F in helping them partner with communicate with talk with work with professionals to make decisions about their child s health care 2 2 2 Not Useful 7 8 Somewhat Useful 11 8 20 0 UsefulUseful 0 1 2 20 60 80 FY2013 F2F OUTREACH 2 Total Families Served 4 991 Total Professionals Served 1 979 24 3 23 3 59 7 Very Useful 46 7 Extremely Useful Extremely Very Useful Useful 40 CONTACT Vermont Family Network 600 Blair Park Rd Ste 240 Williston VT 05495 Phone 802 876 5315 Toll Free 800 800 4005 Fax 802 876 6291 Website http www vermontfamilynetwork org Contact Lisa Maynes lisa maynes vtfn org Web Visits 47 299 100 Materials Disseminated 6 673 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 55 V E R M O N T
F2F Vermont Family Network  VFN  Vermont Family Network began in July, 2008, when the Vermont Parent Information Center  V...
F2F Family to Family Network of Virginia V I R G I N I A The Family to Family Network of Virginia an initiative of the Center for Family Involvement at Virginia Commonwealth University s Partnership for People with Disabilities Program is a seven site and growing Familyto Family Network where family members of culturally and linguistically diverse children and young adults with disabilities have people in their own communities to call upon in their efforts to identify and obtain needed information services and community supports The Network s F2F project provides health related information referrals training and support to families of CSHCN and the professionals who serve them 296 668 children 16 1 88 093 children have inadequate insurance 78 667 children have conditions that consistently affect their activities 99 583 do not receive familycentered care HIGHLIGHT Resource Guide for Families of Children with Hearing Loss CSHCN Whose Conditions Cause Financial Problems for the Family Our Resource Guide for Families of Children with Hearing Loss is the first in a series of booklets designed to provide information in an unbiased manner so that families can make the choice of services intervention therapies and or communication modalities that is right for them This particular resource guide which is easy to read and filled with graphics is focused on infants and toddlers diagnosed as deaf or hard of hearing through newborn hearing screening and features an overview of hearing and communication information on assistive technology hearing aids and cochlear implants and sections on early intervention special education and state resources CSHCN in VA1 33 3 19 5 CSHCN Overall 11 4 CSHCN with Adequate Insurance CSHCN without Adequate Insurance From September 2013 through March 2014 165 families were referred to the VA F2F HIC who had children diagnosed as deaf hard of hearing through Virginia s Early Hearing Detection and Intervention Program In addition to enhanced 1 1 emotional support the resource guide was reviewed with each family through home visits Of the supported families who responded to a follow up survey 95 reported that the information provided was useful in making decisions about communication modalities In addition to satisfaction and impact we learned from these families about their timely referral to early intervention services 91 within 3 month of diagnosis The Resource Guide is available on our website and a Spanish version will be uploaded this summer A second resource guide for families of young children diagnosed with Autism Spectrum Disorder will be published in the fall of 2014 a third resource guide for families of children with genetic disorders is planned for release in winter 2015 FEEDBACK What a great resource we are now connected to services Irene from the F2F came to visit us we live over an hour away She has been absolutely great and this resource guide has advised us about all hearing loss related things we wanted to know IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the VA F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 2 6 5 Not Useful 1 3 Somewhat Useful Useful Extremely Useful 20 8 Very Useful Total Families Served 4 074 Total Professionals Served 990 27 3 44 2 FY2013 F2F OUTREACH 2 Materials Disseminated 14 514 CONTACT Family to Family Network of Virginia Center for Family Involvement VCU 700 E Franklin Street 1st Floor Richmond VA 23219 Phone 804 828 0352 Toll Free 877 567 1122 Website http www centerforfamilyinvolvement org Contact Dana Yarbrough dvyarbrough vcu edu National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 56 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Family-to-Family Network of Virginia V I R G I N I A  The Family-to-Family Network of Virginia, an initiative of the ...
F2F PAVE Family to Family Health Information Center Family Voices of Washington Pave Partnerships for Action Voices for Empowerment is a non profit organization dedicated to sharing information and resources with people whose lives are linked to children and adults with disabilities PAVE F2F staff provide advice based on their personal experience with health care systems They offer a multitude of resources and connect families with a network of other families and professionals for support and information They provide individual counseling as well as group education on health care issues F2F staff help identify potential areas for service improvement and bring family perspective to health care improvement discussions HIGHLIGHT Family Youth Systems Partners Round Table Project We are working with the Washington State Division of Behavioral Health and Recovery mental health providers and families and youth who are receiving services to create local and regional forums that provide input and governance and recommend changes needed in the system of behavioral health services These partners also work in roundtables with a group of representatives from all regions to provide direct recommendations to leadership and legislature These roundtables are currently underway in 6 counties and will be expanding to 13 counties This project has allowed families and youth to have a direct impact on their own mental health services and treatment plans To date we have worked with 205 families and youth as well as representatives from family organizations State agencies and many others The participating families and youth have also created and presented awareness events for the community around bullying and mental health stigmas CSHCN in WA1 235 920 children 15 0 71 788 children have inadequate insurance 64 659 children have conditions that consistently affect their activities 70 338 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 39 9 21 3 12 5 IMPACT on a Family I am a grandmother raising my granddaughter who has needed intensive mental health services I joined the local regional round table FYSPRT because I wanted to see changes in the mental health services provided and to be able to have my voice heard I also wanted my granddaughter to have the opportunity to learn to advocate for herself and to interact with other youth who understand her experience Being a part of the FYSPRT group has given her more stability and new skills to support her friends who are doing unsafe things She has gained confidence by sharing her ideas and opinions all the way up to state level meetings This has been an important project for both of us CONTACT PAVE 6316 So 12th St Tacoma WA 98465 Phone 253 565 2266 Toll Free 800 5 PARENT Fax 253 566 8052 Website http www familyvoicesofwashington com Contact Jill McCormick jmccormick wapave org 1 2 CSHCN with Adequate Insurance CSHCN Overall CSHCN without Adequate Insurance IMPACT Family Confidence Families rate the usefulness of the support information resources they received from the WA F2F in helping them feel more confident about getting their child the health care and services that s he needs 2 9 1 Useful 48 5 Extremely Useful 42 4 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 3 453 Total Professionals Served 2 069 Web Visits 10 800 Materials Disseminated 2 362 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 57 W A S H I N G T O N
F2F  PAVE Family-to-Family Health Information Center Family Voices of Washington Pave  Partnerships for Action,Voices for ...
F2F West Virginia Parent Training and Information W E S T V I R G I N I A Established in 1991 West Virginia Parent Training and Information WVPTI is a statewide cross disability parent professional and non profit group The F2F at WVPTI works to improve health care and health care supports throughout West Virginia for children with developmental delays chronic illnesses and special needs by empowering families to advocate for their children and youth The statewide Health Information Center reflects a family directed focus HIGHLIGHT CSHCN Home Visiting Program CSHCN in WV1 70 609 children 18 5 21 901 children have inadequate insurance 19 602 children have conditions that consistently affect their activities 21 928 do not receive familycentered care The WV F2F in collaboration with the Parent Network Specialist Project CSHCN Whose Conditions Cause and the West Virginia CSHCN Title V Program is completing year three Financial Problems for the Family of a complete system redesign including policy and procedure to better serve families and children with special health care needs in a more 31 8 comprehensive manner The past three years progress has been made in improving services to families and CSHCN expanding Medicaid services 22 0 Title 19 waiver services and CHIP enrollment among others Most 15 2 importantly the team developed new policies and procedures to improve CSHCN CSHCN without with access to services particularly though a Medical Home and a team driven CSHCN Adequate Adequate Insurance Overall Insurance model of care coordination of services The focus of this model was a home visit for every child entering the Title V Program done by a team that included Title V staff a nurse social worker F2F staff and Parent Network Specialists During the visit the team completed a Level of Need Assessment for the child and family as well as provided direct assistance and referrals to assist each family After the assessment of need the team would follow up with the family to monitor progress This collaboration has helped hundreds of families access health care educational vocational and transition services IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the WV F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 6 7 Useful IMPACT on a Family I never knew what it was or how hard it was to care for a handicapped child until my baby son was diagnosed with an Astrocytoma Stage 2 located in his spinal cord The surgery left him paralyzed from the chest down and incontinent I can honestly say that the help I have received from the F2F program has been so helpful to me You have made my life much easier Through your help I have built a relationship with the companies that provide supplies for Trevor that is now much more cooperative I appreciate that you take the time to listen to me and call even if I am not having a problem just to see how Trevor is doing Thank you from the bottom of my heart 39 3 Extremely Useful 53 9 Very Useful FY2013 F2F OUTREACH 2 Total Families Served 13 927 Total Professionals Served 6 181 CONTACT WV Family to Family Health Information Center 1701 Hamill Avenue Clarksburg WV 26301 Phone 800 281 1436 Toll Free 800 281 1436 Fax 304 624 1438 Website http www cedwvu org programs family Contact Todd Rundle tarundle hsc wvu edu 1 2 Materials Disseminated 21 814 Trainings 104 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 58 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  West Virginia Parent Training and Information  W E S T V I R G I N I A  Established in 1991 West Virginia Parent Trai...
F2F Family Voices of Wisconsin As the F2F in Wisconsin Family Voices of Wisconsin is a statewide network of families who have CSHCN and those who work on their behalf The focus of our work is health care access coverage and community supports and services for children and youth with disabilities and special health care needs We work closely with the Regional Centers for Children and Youth with Special Health Care Needs around Wisconsin to make sure families find the resources they need HIGHLIGHT What s After High School This training is a 30 000 foot overview on considerations for transition to adult life for youth with disabilities and or special health care needs This is the only training in Wisconsin which looks at transition the way youth and families live their lives and experience this transition across a variety of domains Topics include moving into adult health care guardianship and assisted decision making public education for youth 18 21 postsecondary options employment options residential options community participation self determination and self advocacy This training is delivered in person to many communities throughout Wisconsin and is also archived as a web cast on the Department of Health Services website In 2013 What s After High School was presented in 7 communities reaching 166 family members youth and professionals Feedback from participants W I S C O N S I N CSHCN in WI1 201 529 children 15 5 61 610 children have inadequate insurance 52 617 children have conditions that consistently affect their activities 64 691 do not receive familycentered care CSHCN Whose Conditions Cause Financial Problems for the Family 32 6 18 4 11 5 CSHCN Overall CSHCN with Adequate Insurance CSHCN without Adequate Insurance Gave me more ideas for what to ask for to help plan for the future and also who to ask I m less afraid to reach out for advice help and connections and I am now aware of so many more possibilities for my son IMPACT on a Family In March 2014 we hosted Advocacy for Change A Family Leadership Institute in collaboration with The Wisconsin Board for People with Developmental Disabilities Disability Rights Wisconsin The Survival Coalition of Wisconsin Disability Groups Wisconsin Family Ties and Parent to Parent of Wisconsin This Institute provided the 35 family leader participants an opportunity to be briefed on current disability issues to frame their family story and to receive support on how to tell their story to State Legislators and their staff As a result of participating in Advocacy for Change 100 of the participants reported that they felt better prepared to advocate for their concerns and 100 also reported that they felt better prepared to partner with decision makers to improve care IMPACT Service Navigation Families rate the usefulness of the support information resources they received from the WI F2F in helping them find and or learn about community services primary health care intervention programs translation services etc 2 1 6 Somewhat Usefu1 11 8 20 0 31 1 UsefulUseful Useful 0 1 2 20 45 9 Very Useful 40 60 24 3 21 3 Extremely Extremely Useful Useful 80 100 CONTACT Family Voices of Wisconsin P O Box 55029 Madison WI 53705 Phone 608 220 9598 Website http www fvofwi org Contact Barbara Katz barb fvofwi org FY2013 F2F OUTREACH 2 Total Families Served 10 263 Total Professionals Served 3 162 Materials Disseminated 9 500 Trainings 59 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 59
F2F  Family Voices of Wisconsin As the F2F in Wisconsin, Family Voices of Wisconsin is a statewide network of families who...
F2F Wyoming Family to Family Health Information Center W Y O M I N G The WY F2F HIC at the Wyoming Institute for Disabilities WIND University of Wyoming is a statewide family led initiative that provides information education training outreach and peer support to families of CSHCN and the professionals who serve them WIND partners with UPLIFT WY s Federation of Families and Family Voices of WY WY families and health professionals the WY Department of Health s Maternal and Child Health Section and Office of Multicultural Health and University of Wyoming faculty members to develop and provide health care information The F2F HIC is staffed by trained family leaders who have CSHCN and expertise in navigating federal state and local public and private health care systems HIGHLIGHT Video Series 18 194 children 14 1 5 750 children have inadequate insurance 5 071 children have conditions that consistently affect their activities 5 711 do not receive family centered care FY2013 F2F OUTREACH 2 The WY F2F HIC has created videos for families to learn more information about specialized health topics for CSHCN The information in these videos is research based and features experts including family leaders community professionals and U of WY faculty All videos are accompanied with a downloadable fact sheet with more information Topics include breastfeeding developmental milestones nutrition medication use socialization well being mental health autism and the DSM V and medical home initiatives in Wyoming These videos are available on demand so families can access the information whenever is most convenient for them including through smart phones These videos have reached over 435 viewers In our 2013 survey families rated these videos as very useful In 2014 WY F2F HIC is collaborating with WY Department of Family Services to provide these videos to foster parents to earn continuing education units and better serve children in foster care with SHCN IMPACT on a Family CSHCN in WY1 Total Families Served 6 089 Total Professionals Served 893 Materials Disseminated 12 712 Trainings 94 CONTACT Wyoming Institute for Disabilities WIND 1000 E University Ave Department 4298 Laramie WY 82071 2000 Phone 307 766 2764 Toll Free 888 989 9463 Fax 307 766 2763 Contact Sara DiRienzo sdirienz uwyo edu Before our family found WY F2F HIC we were beaten down and isolated Our adopted seven year old son Anthony was a survivor He had spent his first six years in an unsafe environment was abducted at the age of five and lived with a new family for a year that was unable to adopt him Anthony was angry and aggressive He felt abandoned We connected with the WY F2F HIC and quickly learned that they cared about us both our son and his struggles and the entire family We learned from them the F2F HIC how to protect our son at school how to stop adults from bullying him because he was different how to talk with our relatives to help them understand our needs and to stop offering unsolicited and often ignorant advice We made mistakes but WY F2F HIC was there when we needed to figure out a new approach for Anthony They prepared us for the struggles we faced as a family and gave us the tools we needed to search for options and make hard decisions for him and for ourselves The greatest gift WY F2F HIC gave us was removing our sense of isolation Attending a parent panel at the children s mental health conference changed my life We realized that we aren t alone Other parents were struggling through the same battles Others felt as isolated as we did Being with other families like us I felt normal for the first time in years If I could send a hug out daily to the WY F2F HIC staff I would We love WY F2F HIC like family 1 2 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org FY2013 F2F data represents families and professionals served through one to one contact training and broader outreach from June 1 2012 through May 31 2013 National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org 60 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F  Wyoming Family-to-Family Health Information Center  W Y O M I N G  The WY F2F HIC at the Wyoming Institute for Disabi...
THE FAMILY At the Heart of Health Care The preceding pages document the outreach of the F2F in each state and the District of Columbia and highlight examples of the ways in which F2Fs connect families of CYSHCN to communities resources the broad range of information F2Fs give families through one to one assistance and training and the mentorship and opportunities F2Fs offer to help families partner with providers Title V and other policy makers Perhaps there is no better illustration of the role of the family in caring for a CYSHCN than the diagram below outlined by Cristin Lind a parent of a child with special health care needs The chart depicts the complexity of interactions with systems and people that a family such as the Linds face F2Fs are a critical source of support and assistance to families like the Linds because F2Fs have staff with real family experiences in real communities The help F2Fs provide is free and is offered in a culturally and linguistically competent manner Used with permission of Cristin Lind http www durgastoolbox com F2F CHARTS State by State The following pages summarize information provided by each F2F about their level of partnership with other entities their involvement in specific initiatives the methods they use to provide assistance information and training and the sources of funding that contribute to the work of the F2F project National Survey of Children with Special Health Care Needs NS CSHCN 2009 10 Data query from the Child and Adolescent Health Measurement Initiative Data Resource Center for Child and Adolescent Health website Retrieved 04 03 2014 from www childhealthdata org Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 61
THE FAMILY  At the Heart of Health Care The preceding pages document the outreach of the F2F in each state and the Distric...
F2F INVOLVEMENT with PARTNERS AK MO F2F HICs AK MO rated their involvement with partners 0 None to 5 Significant AK AL Partner AR AZ CA CO CT DC DE FL 360 Grantees 2 1 1 1 1 3 1 1 AAP national 1 1 2 1 1 2 1 1 Advocacy Groups Health Care Coverage 1 5 2 3 4 4 5 1 GA HI 2 5 2 5 2 2 4 5 4 3 IA 3 ID 1 IL 5 IN KS 1 1 KY LA 1 2 3 MA MD ME MI 1 2 4 2 1 1 2 5 5 3 1 1 5 4 2 5 MN MO 1 5 1 1 1 3 1 2 4 3 5 3 Child Advocacy Organizations 3 3 3 4 4 4 5 5 4 5 2 4 5 2 5 4 3 4 4 5 5 2 Child Care Agencies 2 2 2 3 3 2 2 5 2 4 2 4 2 2 3 3 2 5 2 4 1 4 2 4 5 5 5 2 3 3 1 5 Childrens Hospital s or Pediatric Units in Hospitals 4 4 5 4 4 5 5 2 4 3 3 4 5 4 5 5 4 3 4 Community Disaster Preparedness Groups 2 2 1 3 2 4 3 1 3 3 3 1 2 1 3 5 3 2 5 3 3 5 3 2 5 4 5 5 5 4 3 5 Community Health Rural Health Centers 2 3 1 2 2 5 3 2 2 5 2 2 DD Developmental Disability Agency Pgm 5 4 4 4 5 4 5 2 4 5 5 5 5 2 3 4 1 3 3 5 4 5 4 5 Department of Education Schools 3 2 5 5 4 4 5 5 1 5 5 4 5 5 4 4 5 3 5 4 5 5 5 5 4 Disability Specific Organizations 3 5 4 3 4 5 5 3 4 4 3 4 4 5 5 5 3 3 5 4 5 3 5 5 5 5 3 Early Intervention 3 5 4 5 3 3 4 4 3 4 5 5 Emergency Medical Services 1 2 2 2 1 3 5 1 4 2 2 4 5 4 5 5 4 5 1 3 3 2 2 5 Ethnic Cultural Racial Specific Orgs 2 1 4 4 3 4 5 2 3 2 3 2 3 2 4 5 4 3 2 Faith Based Orgs 2 3 2 3 2 2 5 4 2 2 2 3 3 2 2 5 2 3 2 5 4 5 5 5 5 2 3 5 2 5 3 3 3 5 4 1 2 3 2 3 Fathers Support Groups 1 1 1 1 2 2 3 5 1 5 2 2 1 2 5 2 1 2 4 1 3 3 2 3 Federation of Families Mental Health Orgs 4 3 2 3 2 4 5 1 4 5 2 4 2 5 4 5 1 3 4 5 3 4 3 3 5 Foster Care Agencies 4 2 2 3 2 2 1 1 2 3 3 4 5 3 2 3 3 2 4 3 4 1 3 2 Head Start Early Childhood Programs 3 2 3 3 5 3 2 3 2 5 5 4 4 5 5 5 5 3 5 4 4 5 5 5 Health Care Quality Organizations Programs 1 1 3 1 2 5 4 2 1 5 2 4 2 3 3 2 2 1 1 4 1 2 2 HMOs or other private insurance companies 1 2 1 1 2 2 1 1 3 5 1 5 1 5 2 2 1 1 3 2 2 4 2 5 HUD Housing 2 1 1 1 2 2 1 1 1 3 1 2 4 2 2 1 1 2 1 Independent Living Centers 2 3 2 3 2 2 3 2 2 5 3 2 2 5 4 3 5 2 2 2 1 1 5 1 1 1 4 1 3 1 3 1 5 1 5 5 1 5 4 5 1 5 2 1 3 3 2 3 5 5 5 5 3 1 2 1 2 5 1 2 1 4 1 2 2 1 2 5 5 4 3 5 4 5 4 2 5 5 5 2 Indian Health Services 5 1 1 2 2 1 1 1 1 2 1 Integrated Systems Grantees 2 3 1 1 2 5 5 1 5 4 2 3 Juvenile Justice Programs 2 1 1 1 1 1 1 2 2 2 4 3 Lend Program or Univ Ctr on Disability Pgm 3 3 4 3 2 5 5 2 4 5 5 5 March of Dimes 1 3 1 1 2 1 1 1 1 2 3 4 Medicaid Agency 2 3 2 3 2 5 5 2 5 5 3 5 1 3 2 3 2 3 2 2 5 3 4 3 5 3 3 4 2 3 2 2 4 5 Mental Health Agency 2 2 3 4 3 4 5 3 3 5 3 4 2 3 4 3 5 3 5 4 4 5 5 4 5 Mental Health partners 3 2 3 3 2 4 3 3 4 5 2 3 3 5 5 5 3 3 5 4 4 3 3 5 4 5 5 1 1 1 1 5 1 3 1 1 2 1 1 3 3 1 2 2 1 2 1 4 3 2 5 3 5 3 2 3 3 3 4 4 NICHQ Learning Collaboratives 3 3 1 1 1 4 5 1 1 4 3 2 Nursing Associations 1 1 1 2 1 2 4 1 1 4 1 4 Oral Health partners 2 2 3 2 2 3 1 2 4 3 1 3 Other parent led organizations 5 5 3 3 4 4 5 5 5 5 3 5 5 5 5 5 5 3 5 5 5 5 5 5 5 P2P Parent to Parent programs 1 5 2 5 5 5 5 4 5 5 5 4 4 1 1 5 5 5 5 5 5 5 5 2 5 Protection and Advocacy Agencies 5 3 5 3 4 3 5 4 3 5 3 5 4 5 3 5 5 4 5 3 5 3 5 4 5 PTI Parent Training and Information programs 5 4 5 5 4 3 5 5 3 2 5 4 5 5 4 3 5 5 5 5 5 5 5 5 5 Regional Genetics Collaboratives 3 4 1 3 2 5 5 1 2 2 2 5 4 3 5 2 5 1 5 1 3 3 3 5 Regional MCH Leadership 4 4 2 4 2 4 5 2 5 5 5 3 2 2 4 4 1 2 5 2 5 5 2 2 4 4 5 4 3 3 5 3 3 2 2 SCHIP Program 1 3 2 2 2 5 4 1 3 5 3 5 5 2 2 4 3 3 State Chapter of AAP 2 3 5 4 2 3 2 1 5 4 3 5 3 5 5 2 2 1 State Title V Programs 4 5 5 5 3 4 5 2 5 5 5 5 3 5 5 5 5 5 5 5 5 5 5 5 5 Universities 2 5 5 4 4 3 5 1 4 5 2 5 5 5 4 5 3 3 5 3 4 3 2 5 5 Vocational Rehabilitation Agencies 2 5 2 2 2 2 3 3 2 5 4 3 3 5 3 3 4 4 5 5 5 5 2 3 Youth Advisory Groups organizations 2 4 2 1 3 2 5 4 1 5 2 2 3 2 5 4 3 1 3 4 5 3 5 62 FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F INVOLVEMENT with PARTNERS  AK-MO   F2F HICs  AK-MO  rated their involvement with partners  0 None to 5 Significant    ...
F2F INVOLVEMENT with PARTNERS MS WY F2F HICs MS WY rated their involvement with partners 0 None to 5 Significant MS MT NC ND NE NH NJ Partner 360 Grantees 5 1 2 4 4 1 5 NM NV NY OH OK OR PA RI 1 2 1 1 4 1 1 1 SC SD TN TX UT VA VT WA WI WV WY 2 5 1 2 5 5 AAP national 2 1 2 3 2 1 4 1 2 3 1 1 1 3 4 2 1 3 2 3 1 3 Advocacy Groups Health Care Coverage 1 3 3 4 4 5 5 3 4 2 5 2 5 5 5 4 5 5 5 5 2 5 1 2 1 1 4 1 1 5 4 2 Child Advocacy Organizations 5 5 4 5 5 4 5 5 4 3 5 2 3 5 5 3 5 5 5 5 2 5 5 3 5 1 Child Care Agencies 1 2 2 4 4 4 5 3 2 1 2 2 2 1 4 2 5 2 2 3 3 3 2 1 2 2 Childrens Hospital s or Pediatric Units in Hospitals 2 3 4 4 5 1 5 3 4 5 5 3 5 5 5 5 5 5 5 5 4 5 4 4 4 4 Community Disaster Preparedness Groups 3 1 3 5 4 1 5 1 3 2 2 1 2 1 4 2 2 5 3 1 1 4 2 1 3 2 Community Health Rural Health Centers 2 2 2 3 4 1 5 2 4 2 3 1 5 2 4 3 4 3 3 3 1 4 2 3 3 2 DD Developmental Disability Agency Pgm 5 5 3 5 5 3 5 5 4 5 5 4 5 4 5 5 5 5 5 4 5 5 4 5 5 2 Department of Education Schools 3 5 3 5 5 3 5 5 4 3 5 2 3 5 5 5 5 5 3 4 5 5 4 4 5 5 Disability Specific Organizations 2 5 3 4 5 1 5 5 4 5 5 4 5 5 4 5 5 5 4 4 5 5 3 4 5 1 Early Intervention 5 5 3 5 5 5 5 5 5 4 5 3 4 3 5 5 5 5 5 5 5 5 4 3 4 3 Emergency Medical Services 1 1 1 5 2 2 4 1 1 2 1 1 2 1 4 1 1 5 5 3 1 2 5 2 5 1 Ethnic Cultural Racial Specific Orgs 1 1 4 3 3 1 5 4 4 3 3 2 3 3 4 3 3 5 2 3 5 4 3 4 3 3 Faith Based Orgs 1 1 2 3 3 1 5 2 1 1 3 2 1 3 2 5 3 4 2 3 3 3 3 2 2 1 2 Fathers Support Groups 2 1 2 3 5 1 5 3 1 5 1 Federation of Families Mental Health Orgs 1 5 3 5 5 3 5 1 4 4 3 1 1 4 5 3 2 2 1 2 4 3 2 1 2 4 2 4 5 3 4 2 4 5 5 2 4 1 5 Foster Care Agencies 3 3 4 3 5 4 5 1 3 2 2 1 3 1 4 1 5 2 2 3 3 3 2 2 4 3 Head Start Early Childhood Programs 5 3 5 4 5 4 5 5 4 1 5 3 4 2 4 2 5 3 2 4 3 5 3 2 4 3 Health Care Quality Organizations Programs 5 2 1 3 3 3 5 2 3 1 5 1 5 4 5 3 1 5 2 5 1 5 4 3 3 1 HMOs or other private insurance companies 1 2 1 4 4 2 5 5 2 2 5 1 3 1 3 4 2 3 5 3 2 3 3 3 1 HUD Housing 5 1 1 3 3 1 4 1 2 3 5 1 1 1 4 2 3 3 2 2 1 4 2 1 3 2 Independent Living Centers 5 3 3 4 4 4 5 1 4 2 2 1 1 4 3 2 5 5 2 4 5 5 4 3 5 1 Indian Health Services 1 2 2 3 4 1 3 2 3 1 1 2 4 1 2 1 4 1 1 3 1 3 3 3 1 2 Integrated Systems Grantees 5 5 2 3 3 1 5 1 5 2 5 2 1 4 4 5 5 2 5 5 2 5 4 1 1 1 Juvenile Justice Programs 1 5 2 3 4 1 5 1 1 2 2 2 1 1 3 1 3 2 1 1 1 4 3 1 1 4 Lend Program or Univ Ctr on Disability Pgm 5 5 3 4 5 5 5 3 5 4 5 5 5 3 3 5 5 5 4 5 5 5 5 5 5 5 March of Dimes 1 5 1 4 4 1 5 1 4 3 2 1 2 1 4 4 3 2 4 3 1 3 2 1 3 1 Medicaid Agency 2 5 4 5 5 4 5 2 3 4 5 5 5 5 5 5 2 5 4 5 3 5 4 3 4 4 Mental Health Agency 2 5 3 3 5 3 5 2 3 3 3 5 4 2 4 4 5 4 3 4 5 5 3 3 3 5 Mental Health partners 1 5 3 4 5 2 5 1 2 3 3 3 5 2 4 2 5 4 3 3 2 5 4 3 3 5 4 NICHQ Learning Collaboratives 1 2 1 4 5 1 5 1 1 1 5 1 5 4 4 1 1 3 2 5 1 4 Nursing Associations 1 1 3 3 5 1 4 3 2 3 3 3 1 2 4 1 2 4 3 4 1 3 1 1 1 3 3 2 Oral Health partners 1 1 5 3 5 1 5 2 3 3 3 1 2 1 4 4 3 3 2 3 1 5 3 5 4 Other parent led organizations 3 5 4 5 5 5 5 5 5 4 5 4 5 4 5 5 5 5 4 5 5 5 5 5 5 3 P2P Parent to Parent programs 1 5 4 5 5 4 5 5 5 5 5 5 5 4 5 5 3 5 5 4 5 5 5 5 Protection and Advocacy Agencies 2 5 4 5 5 4 5 5 4 3 2 2 2 5 5 3 5 5 3 5 5 5 2 5 1 4 2 PTI Parent Training and Information programs 5 5 5 5 5 5 5 5 4 5 5 3 5 5 5 5 5 5 4 5 5 5 5 3 5 2 Regional Genetics Collaboratives 2 5 2 5 4 5 5 1 3 3 5 4 5 1 2 4 4 5 4 5 1 5 5 3 2 1 Regional MCH Leadership 1 2 2 5 5 1 5 5 5 3 3 3 5 4 5 5 4 5 5 4 1 5 5 1 3 5 SCHIP Program 1 3 3 5 5 4 5 3 4 2 5 2 5 1 5 5 2 3 2 4 2 5 4 3 5 2 State Chapter of AAP 5 2 2 4 2 3 5 1 2 2 2 1 3 5 5 4 1 5 3 5 1 4 4 3 2 1 State Title V Programs 5 5 2 5 5 5 5 3 5 4 5 4 5 4 5 5 5 5 5 5 5 5 4 5 5 1 Universities 5 4 5 5 5 5 5 5 4 3 3 3 2 2 4 5 5 5 3 5 5 5 5 5 5 5 Vocational Rehabilitation Agencies 3 5 3 5 5 1 5 2 2 2 2 3 1 3 4 2 5 4 2 4 5 4 4 3 5 2 Youth Advisory Groups organizations 5 5 3 5 5 5 5 2 2 2 5 3 3 5 4 1 2 5 2 3 5 3 3 2 5 1 Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 63
F2F INVOLVEMENT with PARTNERS  MS-WY   F2F HICs  MS-WY  rated their involvement with partners  0 None to 5 Significant    ...
F2F INVOLVEMENT IN SPECIFIC INITIATIVES AK MO F2F HICs AK MO reported their involvement developing curriculum materials making presentations serving on committees etc in the following specific areas Initiative AK AL ACA Implementation AR AZ CA CO CT DC DE FL Autism Child Welfare Child Protection Child Abuse Neglect Prevention or Asthma IA ID IN KS IL KY LA GA HI Assistive Technology MA MD ME MI MN MO Intervention Chronic Care Management Cultural Linquistic Competence Disaster planning Emergency Response Domestic Violence Early Hearing Detection and Treatment Epilepsy EPSDT Family centered Care Federally Qualified Health Centers or Other Community Health Centers Clinics Cultures Medicaid Buy in Medicaid Managed care Medical Home Military Families Tricare Other Healthcare Financing Palliative Care Other Disease specific Obesity Prevention Intervention Parents with Disabilities Private Insurance HMOs Provider Training Quality Improvement Initiatives Respite State Consortium around MCH Issues Title V Block Grant Title V Needs Assessment Transition Youth Leadership SCHIP Hospital Care Reducing Hospital Readmissions Improving 64 Medicaid Tribal Nations Limited English Proficient Families Mental Behavioral Health Improving Pregnancy Birth Outcomes Medicaid Waivers Immigrant Families Families of Diverse Health Information Technology Health Wellness Promotion Prevention Foster care FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F INVOLVEMENT IN SPECIFIC INITIATIVES  AK-MO   F2F HICs  AK-MO  reported their involvement  developing curriculum materi...
F2F INVOLVEMENT IN SPECIFIC INITIATIVES MS WY F2F HICs MS WY reported their involvement developing curriculum materials making presentations serving on committees etc in the following specific areas Initiative MS MT NC ND NE NH NJ ACA Implementation Assistive Technology NM NV NY OH OK OR PA RI Asthma Abuse Neglect Prevention or SC SD TN TX UT VA VT WA WI WV WY Autism Child Welfare Child Protection Child Intervention Chronic Care Management Cultural Linquistic Competence Disaster planning Emergency Response Domestic Violence Early Hearing Detection and Treatment Epilepsy EPSDT Federally Qualified Health Centers or Other Community Health Centers Clinics Foster care Health Wellness Promotion Prevention Health Information Technology Immigrant Families Families of Diverse Cultures Improving Pregnancy Birth Outcomes Limited English Proficient Families Medicaid Medicaid Buy in Medicaid Managed care Medical Home Mental Behavioral Health Military Families Tricare Parents with Disabilities Private Insurance HMOs Provider Training Transition Youth Leadership Title V Needs Assessment Title V Block Grant Hospital Care SCHIP State Consortium around MCH Issues Reducing Hospital Readmissions Improving Respite Quality Improvement Initiatives Other Disease specific Other Healthcare Financing Palliative Care Obesity Prevention Intervention Medicaid Waivers Family centered Care Tribal Nations Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 65
F2F INVOLVEMENT IN SPECIFIC INITIATIVES  MS-WY   F2F HICs  MS-WY  reported their involvement  developing curriculum materi...
F2F FUNDING SOURCES AR AZ CA CO DC GA IA ID FL CT HI United Way AL DE State Implementation Grant for Integrated Community Systems for CYSHCN D70 State Implementation Grant for Innovative Evidence based Programs State Implementation Grant for Autism other DD SPDG from State DOE SAMSHA other mental health grants Parent to Parent P2P PTI Other State DOE Funding Other Foundations Medicaid Provider MCH Block Grant LEND UCEDD DDRC Fee for Service Grants related to adults with disabilities Early Intervention Head Start Early Childhood AAP AK DoH HHS Developmental Disabilities Conversion Foundation or other Health Care Financing organization F2F HICs reported the sources of funding that contribute to the work of the F2F IL IN KS KY LA MA MD ME MI MN MO MS MT NJ NM NV NH ND NE NC NY OH OK OR RI SC TX VT 66 WV WY WA WI VA TN UT PA SD FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F FUNDING SOURCES       AR AZ       CA           CO                                                      DC             ...
F2F FUNDING SOURCES Additional Information The F2F HICs below reported additional sources of funding that contribute to the work of the F2F State AZ Additional Funding Source First Things First Arizona tobacco tax birth 5 grant for Parent Training for homeless families CA Hospital Family Navigators GA ACA Navigator Grant HI Private Insurance IL Support from The Arc of Illinois KY Dignity Health for Smooth Way Home NICU project City Funding CO Additional Funding Source Kentucky Infant Sound Start MD Improving Access to Services for Children and Youth with Epilepsy and other Seizure Disorders Colorado Health Care Exchange Early Hearing Detection and Intervention NC Combined Campaign Federal NM OSEP Federal Funding DOH Funding FIT Program NV Community Fundraisers Web Based Fundraisers NY Sub contract with our state s PTIC program OR Learn the Signs Act Early Grants PA Developmental Disability Council grant on Children in Congregate Care MCHB Action Learning Collaborative Developmental Disability Council grant on Inclusive practices in nontraditional schools charter cyber charter private parochial homeschoolers Helping Families of Children Youth with Special Health Care Needs the Professionals Who Serve Them 67
F2F FUNDING SOURCES - Additional Information  The F2F HICs below reported additional sources of funding that contribute to...
F2F METHODS of ASSISTANCE TRAINING CO CT DC DE FL IA KY LA MA MN MO MS MT NC NJ NM NY OH OK OR TN TX Website Webinars WA VT 68 WY WV WI VA UT SD RI NV PA NH NE MI ME SC KS MD IL ND ID IN HI GA Videos Youtube Channel Twitter Topical Calls Support Groups Resource Tables at Community Events Materials Resource Guides Tip Sheets etc Public Service Announcements Pinterest Parent Matching Listservs Online Courses Training Library Lending Program Newsletters In person training AZ Focus Groups Family Surveys Facebook Distance Learning AR CA Direct Assistance Telephone or Email Conferences Conference Calls Care Notebook AL Blogs AK Direct Assistance In Person F2F HICs reported the methods they use to provide assistance and training FY2014 Activities Accomplishments of Family to Family Health Information Centers
F2F METHODS of ASSISTANCE TRAINING                CO       CT DC       DE       FL                                        ...