2014 ANNUAL REPORT Keeping families at the center of health care 1
2014 ANNUAL REPORT  Keeping families at the center of health care  1
Dear Friends, The past year has been busy and rewarding for the Board and staff of Family Voices of Minnesota. Family Voices partnerships both within Minnesota and nationally continue to expand, including our most recent partnership on a project with the Children’s Hospital Association and the National Initiatives for Child Health Quality as well as a new grant project with the Minnesota Department of Health. The Family Voices of Minnesota Parent to Parent program continues to grow, receiving multiple requests for parent to parent peer support each week. The program has grown to include 104 specially trained Volunteer Support Parents located throughout Minnesota representing the Hmong, Latino, Somali and African American communities. Family Voices of Minnesota’s Parent to Parent program also includes regional and multi-cultural Parent Support Navigator staff located in the Willmar, Duluth, Rochester and the Twin Cities metropolitan areas. Family Voices of Minnesota’s commitment to support families of children and youth with complex health care needs and disabilities is only possible with the generosity of our donors and volunteers, along with the hard work of our staff and Board of Directors—Thank you! Ed Shapland Board President 2
Dear Friends, The past year has been busy and rewarding for the Board and staff of Family Voices of Minnesota. Family Voic...
Who are Children with Special Health Care Needs? Children and youth with special health care needs have physical, mental or emotional disabilities, or may have a chronic or life threatening medical condition. Some children only need an accurate diagnosis and routine treatment; while others will require life sustaining technology, and treatment throughout their lives.  There are about 179,000 children and youth with special health care needs and disabilities in Minnesota  1 in 5 Minnesota families with children have at least one child with special health care needs 3
Who are Children with Special Health Care Needs  Children and youth with special health care needs have physical, mental o...
Family Voices of Minnesota’s Mission Family Voices of Minnesota aims to achieve family-centered care for all children and youth with special health care needs and disabilities, by:  Assisting families in understanding and navigating systems of care  Providing leadership and bringing the voice of families to improve health care programs and policies, and  Promoting family/professional partnerships 4
Family Voices of Minnesota   s Mission Family Voices of Minnesota aims to achieve family-centered care for all children an...
What does Family Voices of Minnesota do?  What makes Family Voices of Minnesota different? Family Voices of Minnesota is a family run organization. All staff are parents of children, youth or young adults with special health care needs. Provides tools that assist families in accessing needed services and navigating systems of care  Connects families with one another for support and information  Brings the voice of families to improve the healthcare system  Promotes patient and family-centered care  Builds partnerships among professionals and families, and serves as a trusted resource 5
What does Family Voices of Minnesota do       What makes Family Voices of Minnesota different  Family Voices of Minnesota ...
The Family Voices of Minnesota Parent to Parent Program provides an incredibly unique form of support for families of children and youth with special healthcare needs. This Parent to Parent Program is the only one of its kind in Minnesota because it follows best practice guidelines based on over thirty years of research. Research has shown that linking together families of children with special healthcare needs and disabilities with other families who share similar experiences can have many benefits. Families who have received support through the Family Voices of Minnesota’s Parent to Parent Program:     Experience less anxiety and stress Advocate more effectively for their child. Become more competent partners with their child’s health care provider More successfully organize and utilize services resulting in more effective use of healthcare resources. 6
The Family Voices of Minnesota Parent to Parent Program provides an incredibly unique form of support for families of chil...
MEET KRISTI Kristi is the single parent of a very young child diagnosed with a severe disability. Kristi spoke about how becoming linked with a Volunteer Support Parent through the Family Voices of Minnesota (FVMN) Parent to Parent Program has been an incredibly positive experience for her. Prior to learning about the Parent to Parent Program, Kristi described how receiving the news of her daughter’s diagnosis was devastating and required her to quit her job and move back in with her family. Despite living with her loved ones, Kristi felt alone and scared because she did not have anyone to talk with who understood what she was going through with her daughter. Kristi was referred to the FVMN Parent to Parent Program through her daughter’s county service provider. Kristi described feeling a sense of great relief as soon as she was first contacted by Family Voices of Minnesota’s Parent to Parent coordinator, “that was the first phone call that I got from somebody reaching out to me to see if I was okay and if I needed anything.” Kristi went on to explain how her connection with another parent via the Parent to Parent Program from FVMN provided her with a parent to talk with who could provide information she had not been able to get from her child’s physician or any other source. “I think it's so scary when you walk into the special needs world and you don't know what the heck to expect. All of the parenting books out there… really don't tell you what to do when your child doesn't sit up and she’s seven years old. ” 7
MEET KRISTI Kristi is the single parent of a very young child diagnosed with a severe disability. Kristi spoke about how b...
Family Voices of MN Programs: Supporting Families Parent to Parent: Parent to Parent matches families seeking support with trained Volunteer Support Parents who provide support along with information to help the family better understand and navigate systems of care. Parent to Parent peer support is recommended by the American Academy of Pediatrics in the Bright Futures Guidelines for children with special health care needs and disabilities. Research has shown that when parents receive Parent to Parent support there are better outcomes for the child and family as well as reduced healthcare costs. Family Voices of Minnesota received funding from the Maternal and Child Health Bureau to expand it’s Parent to Parent Program to become part of comprehensive care for children with special health care needs and disabilities in a primary care medical home. Our partners in this project include: Hennepin County Medical Center Department of Pediatrics, Gillette Children’s Specialty Healthcare, Children’s Hospitals and Clinics of MN, St. Luke’s Clinic in Duluth and Essentia Health—Polinsky Medical Rehabilitation Center. Family Voices of Minnesota’s Parent to Parent program has a dedicated Program Coordinator, six Parent Support Navigator staff and 104 Volunteer Support Parents who represent the African American, Hmong, Latino, Somali and serve families who are underserved from urban and rural areas of MN. Center of Excellence for Children with Complex Needs: Family Voices of MN is a partner in this national project that focuses on developing quality measures for children receiving care coordination in a medical/healthcare home. Other 8
Family Voices of MN Programs  Supporting Families Parent to Parent  Parent to Parent matches families seeking support with...
Minnesota partners include the MN Chapter of the American Academy of Pediatrics and the Minnesota Department of Human Services. This project is funded by the Agency for Health care Research and Quality. Minnesota Transition Learning Collaborative: Family Voices of MN has received funding from the National Healthcare Transition Center and the Minnesota Department of Health to provide support and facilitation for a Minnesota Transition Learning Collaborative. This project includes four pediatric practices each working to implement a comprehensive program for youth with special health care needs or disabilities to transition successfully from pediatric to adult health care. Planned Coordinated Care Plan Project: Family Voices of MN partnered with the Center for Medical Home Improvement to create a model for the development of guidelines for care planning and care coordination for children with special health care needs and disabilities . This model will assist in delivering planned, coordinated care. This project resulted in a toolkit developed for primary care Medical Home practices. It was funded by the Lucille Packard Foundation. Individual Assistance: Families can call Family Voices of Minnesota and receive individualized information and support about resources for their child. Newsletter: Family Voices publishes a bi-monthly electronic newsletter with up to date and pertinent local and national information which provides both families and health providers with vital information. 9
Minnesota partners include the MN Chapter of the American Academy of Pediatrics and the Minnesota Department of Human Serv...
Financials Center of Excellence Total Income Parent to Parent Peer Support Other Grants or Contracts Other Expenses Programs Administrative and Fundraising Family Voices by the Numbers Individual assistance and parent to parent support provided to over 824 families 104,000 families and professionals reached through Family Voices of MN outreach efforts 111 Volunteers 566 families and professionals trained 10
Financials Center of Excellence  Total Income  Parent to Parent Peer Support Other Grants or Contracts Other  Expenses  Pr...
INDIVIDUAL DONORS SPOTLIGHT Drs. David Griffin and Margie Hogan David Griffin and Margie Hogan not only both serve on the Board of Directors of Family Voices of Minnesota, but have generously contributed to Family Voices of Minnesota consistently each year. David is an associate medical director at HealthPartners and has an interest in policies affecting children with special health care needs and disabilities. Margie is a pediatrician in the heart of the city at Hennepin County Medical Center, she has an interest in child maltreatment, the impact of media on children and teens and caring for children and adolescents with special health care needs. “Having raised four children of our own, we know the importance of family support, even for families without children with special needs. We were fortunate to have four willing and available grandparents to provide that support. But for families with special needs, even willing grandparents cannot provide all that is required. Their journey is a rough road with many speed bumps along the way. Family Voices of Minnesota provides services to these families that steer them to a smoother ride. We have seen how important that is for the families of children with special needs. We urge all who appreciate the difficulty of that journey to join us in supporting Family Voices of Minnesota in its efforts to smooth that ride.” Thank you for supporting Family Voices of Minnesota, David and Margie 11
INDIVIDUAL DONORS SPOTLIGHT Drs. David Griffin and Margie Hogan  David Griffin and Margie Hogan not only both serve on the...
THANK YOU TO EVERYONE WHO HAS SUPPORTED FAMILY VOICES OF MINNESOTA’S WORK OVER $2,000 Individual Donors David Griffin and Margie Hogan Jane Taylor and Carl Haugen Mary Boss and Gary DeGrande Steve and Michelle Anderson Businesses and Organizations Pediatric Home Services Delta Dental Gillette Children’s Specialty Healthcare Foundations James and Margaret Kelly Foundation $1000—$1,999 Individual Donors Ed and Ceci Shapland Judy and Barbara Brisbine Jane Hogan and Paul Johnson Terry and Carol Kapsen Businesses and Organizations Gillette Children’s Specialty Healthcare Delta Dental Children’s Hospitals and Clinics $500 - $999 Individuals Alfredo and Nannette Beltran Brooks Donald and Karen Mackenzie William and Cathy Dessert Janice and Jeff Schachtman Jim and Maryam Shapland Tom and Linda Ritchie Ryan and Michelle Allshouse Herb and Carolyn Allshouse $200—$499 Individuals Amy J. Robinson Stephen and Sheryl Casey Anthony and Judy Schumacher Bonita Crawford Janda Jay Bellows John and Debbie Erb Jim and Linda Stein John and Yvette Hoffman Laurel Cederberg Phil Kibort Rebecca Schlough Walter and Carol Griffin Businesses and Organizations Holiday Inn, St. Paul 12
THANK YOU TO EVERYONE WHO HAS SUPPORTED FAMILY VOICES OF MINNESOTA   S WORK OVER  2,000 Individual Donors David Griffin an...
$50—$199 Individuals Barbara and Jim Gurovitsch Bob and Jane Hilliard Cathy Urbain John Hurley Jon and Gail Brottman Kagan Marvin and Cindee Gurewitz Colleen Wieck Don Mitchell and Barb Staub Frank and Joy Solomon James Slattery Jane Fethers Jeff Schiff Jill and Howard Stang Jim and Kim Kosmicki Steven and Kristine Heckler Leslie Sieleni Mary Wild Crea Patty Schuessler Stan and Kay Bach Steve and Leslee Maki Terry and Cheryl Crowson Walt and Mary Sembrowich Sarah and Kevin Friesen Tisha Sherdan Earl Geving Annette Thayer Brigitte McConnell Bermo, Inc. Gutherie Theater In Memory of Barbara Brisbine Susan and Douglas Tuve Robert and Jean Lewis Mr. and Mrs. Ken Steichen Kelly and Cindy Larson Hillary and Bryan Lutter Helen and Ben Zoss Dan Gillespie Cheryl Taylor Businesses Barb’s Hair Care Giants Ridge Source Print, Inc. Murrays Restaurant MN Swarm Doug and Laura Mellem—Elite Transportation Systems Haskels, St. Louis Park 13
 50    199 Individuals Barbara and Jim Gurovitsch Bob and Jane Hilliard Cathy Urbain John Hurley Jon and Gail Brottman Kag...
History of Family Voices Of MN Family Voices of Minnesota began in the early 1990’s, during the health care reform discussions of the Clinton administration. At that time, a group of families of children and youth with special health care needs realized that no one was speaking up for the special concerns of their children. These families contacted other parents they knew around the nation and there was an immediate ground swell of support to advocate for better health care for their children. Family Voices was born. Minnesota was one of the first networks of families in the nation to respond to this first call. Family Voices of Minnesota began in 1994 as a grass roots volunteer network of families of children and youth with special health care needs and disabilities for the purpose of sharing their voices to improve the health system and promote family-centered care. Family Voices of Minnesota became a non-profit 501c3 organization in 2009 and is the State Affiliate Organization for: National Family Voices and Parent to Parent USA. 14
History of Family Voices Of MN Family Voices of Minnesota began in the early 1990   s, during the health care reform discu...
Board of Directors John Bellows J.D Margie Hogan MD David Griffin M.D, MBA Ed Shapland, PhD John Hurley, BA, MPH Ceci Shapland, RN, MSN Honorable State Senator John Hoffman Carolyn Allshouse, Executive Director 15
Board of Directors John Bellows J.D  Margie Hogan MD  David Griffin M.D, MBA Ed Shapland, PhD John Hurley, BA, MPH  Ceci S...
PO Box 2234 Stillwater, MN 55082 www.familyvoicesofminnesota.org 1-866-334-8444 16
PO Box 2234 Stillwater, MN 55082 www.familyvoicesofminnesota.org 1-866-334-8444  16