As this will be my last blog, I wanted to review the systems that family caregivers are navigating for their children with special needs and how to get help in a quick cheat sheet.
There is a Parent Training and Information Center in each state. They offer free assistance to families for both special and general education issues. PTIs can help parents know what about their rights and school district responsibilities. (See Resources)
There are Family Voices (special health care needs) and Family-to-Family Health Information Centers in every state. They help families for free on how to find health insurance, information on a new diagnosis, and getting therapies and other specialized services covered.
There are actually 2 good resources for families: the National Federation of Families for Children’s Mental Health and the National Alliance on Mental Illness. They (again free) can help parents whose children have challenging behaviors connect to resources in their state to help.
Besides support groups, Parent-to-Parent matches trained volunteer parents to a family of a child with the same condition (again free.) They can also help families by sharing their own experiences. For parents of children with developmental disabilities, there is a Governor’s Council on Developmental Disabilities in each state which is a good source of information to families as well as a Protection and Advocacy/Disability Rights organization. For children transitioning to adult life, there are Centers for Independent Living that can help develop independent living skills.
Family caregivers of children with special needs may be involved in many “systems.” By finding organizations that provide information and support, they can get the best services for their child with special needs.
Parent Training & Information Centershttp://www.parentcenterhub.org/find-your-center/
Family-to-Family Health Information Centers
National Alliance on Mental Illness
National Federation of Families for Children’s Mental Healthhttps://www.ffcmh.org/chapters
Councils on Developmental Disabilities
National Disability Rights Network
National Council on Independent Living
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.