Family Voices Colorado believes that parents of children with special health care needs should not be alone when they face the scary and confusing task of securing care for their children. Every day we give parents the information and strength they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or surgery for their children. With our help, parents are able to be the heroes their children are counting on.
Like anyone else, parents of children with unique health care needs just want the best for their kids – but when your child is sick or disabled, the stakes are much higher and getting them what they need is often complicated and frustrating. Without Family Voices, families of children with special health care needs would be isolated and feel despair as they attempt to navigate multiple complex health care systems for their children. Budgets would be blown, relationships challenged. These vulnerable children could lose everything as their families disintegrate.
“It is very stressful and discouraging when you work so hard and still can’t provide for the basic needs of your child.” – Lizzie’s parents
Colorado’s health care systems – both public and private – are some of the most under-funded and complex in the nation. So the care you might expect to be available to children often doesn’t exist or is too expensive or difficult for families to access.
“Most of all, [dealing with these financial issues], take[s] us away from doing the best we can for our daughter, so in the end, it is Kelsey who has to bear the burden.” – Kelsey’s parents
Family Voices helps to move parents beyond the isolation, grief and panic they feel when learning their child is disabled and has special healthcare needs and puts those parents back in control of their lives and their children’s welfare. Through working with Family Voices, parents are supported and empowered, resulting in stronger families and an increased ability to advocate effectively on behalf of their children.
Families of children with special healthcare needs often access multiple private and public systems. Consequently, they experience the system limitations more quickly than those whose needs are not as numerous or recurrent. By building partnerships among professionals and these families, Family Voices promotes improved decision-making, better outcomes and higher quality healthcare for everyone the systems serves.
Because Family Voices is rooted in the personal experience and wisdom of its founders and of its current staff and family network, it speaks with a unique authenticity and authority when it recommends new laws and policies to the people in a position to improve the lives of families whose children have a special health need.
We hope you’ll join us in helping make Colorado a better place for families of children with special health care needs.
Family Voices Advisory Board Members:
Deb Federspiel, Manager, Healthy Kids Program and Children’s Health Advocacy Institute (CHAI) at Children’s Hospital Colorado
Laura Pickler, MD, MPH, Assistant Professor Family Medicine and Pediatrics, and the Director Pediatric Oral Feeding Clinic, Special Care Clinic, Children’s Hospital Colorado
Teresa Nguyen, Graduate Student, University of Colorado Denver
Corry Robinson, Director of JFK Partners, Colorado’s University Center of Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) and the Colorado Leadership Education in Neurodevelopmental Disabilities Program (LEND)
Barry Rosenberg, parent, Personal Assistance Services of Colorado (PASCO)