Sunday, May 1, 2016

When Family Caregivers Need Help Navigating the Systems Helping Their Child

- - - - - - - - - - - - - - -

When trying to get services for their children with special needs, family caregivers may run into roadblocks.  There are organizations that can help for free, but sometimes a paid advocate or even a lawyer is needed. 
When or why would family caregivers need help?
There are various systems that parents have to navigate, including education, healthcare, and family support.  Sometimes all it takes is a phone call to an organization to find out what the system’s responsibilities are and what their child’s rights are.  Basic advocacy can be done by keeping good notes and documenting everything.  Sometimes, families need to send a letter confirming a conversation because otherwise there’s no proof of what was said.  Other times parents may need to send documents by certified/return receipt mail to prove it was received. 
Sometimes parents end up disagreeing with their school district on instructional services, related services like therapies, or placement, from inclusion to resource room, a self-contained class or even out of district school.  There are Parent Training and Information Centers in every state that can offer free technical assistance/parent advising to families (see Resources for links below.)  If parents need more help, they can reach out to their state Protection and Advocacy agency.  Paid advocates and lawyers can be found through the Council of Parent Attorneys and Advocates. 
Health Care
Other times families may be struggling with getting medical equipment or other health care from their insurance company (whether it’s private or through Medicaid.)  Or perhaps they’re trying to apply for SSI (Supplemental Security Income.) Or maybe their child just got a new diagnosis.  There are Family Voices State Affiliates and Family-to-Family Health Information Centers in every state that offer free help to parents.  If the issue is still unresolved, the next step could be to contact free legal help from Disability Rights in each state (sometimes call Protection and Advocacy.) 
Family Support
Lastly some parents are dealing with state offices based on their child’s disability.  Sometimes all they need is to talk to another trained volunteer of a child with the same condition and these can be found through Parent-to-Parent.  In every state, there is also a Governor’s Council on Developmental Disability.  Lastly, for families going through transition to adult life, Centers for Independent Living can help maximize their child’s potential.  For free legal help if needed, Disability Rights in each state would help with these family support systems as well.      
Sometimes family caregivers just need to contact a local non-profit to find out more information.  Other times, parents may need a professional paid advocate or even an attorney.  By advocating for their child with special needs, families can get the services their child needs resulting in better outcomes.  Next month I’ll cover how parents can move from individual to systems advocacy to make positive changes for their family and other families like theirs. 
Parent Training and Information Centers


Council of Parent Attorneys and Advocates (map)


Family Voices/Family-to-Family Health Information Centers
National Disability Rights Network

National Association of Councils on Developmental Disabilities
National Council on Independent Living


Remain Hopeful,
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  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 or FB