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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.
Education
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.
Resources:
Parent Training and Information Centers
Council of Parent Attorneys and Advocates (map)
Family Voices/Family-to-Family Health Information Centers
National Disability Rights Network
Parent-to-Parent
National Association of Councils on Developmental
Disabilities
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.
