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.
School Issues
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)
Health Care
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.
Mental Health
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.
Family Support
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.
Resources
Parent Training & Information Centers
http://www.parentcenterhub.org/find-your-center/ 
Family Voices
Family-to-Family Health Information Centers
National Alliance on Mental Illness
National Federation of Families for Children’s Mental Health
https://www.ffcmh.org/chapters
Parent-to-Parent
Councils on Developmental Disabilities
National Disability Rights Network
National Council on Independent Living
Remain Hopeful,
Lauren
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.
