Wednesday, June 1, 2016

How family caregivers can advocate for their child - and help other parents too!

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Part 2 of 2.  Last month’s blog covered advocacy for children with special needs.  Many parents move from individual to systems advocacy and end up helping other families in the process.   

Individual vs. Systems Advocacy

There are various systems that parents have to navigate, including education, healthcare, and family support. Parents may find after their struggles that they don’t want other families to have to go through the same thing.  I got started when my daughter was originally denied SSI (Supplemental Security Income) because she “wasn’t disabled enough” even though she almost died.  I thought this was a clear misinterpretation of the letter and intent of the law.  Our early intervention program was asking parents for letters if they had a hard time getting SSI for their children with disabilities.  Doing this was the first step on my journey as an advocate.    

Ways to Advocate 

Parents of children with special needs can start slowly and build up their advocacy efforts as time allows.  It could just be a response to an “action alert” from a family support or disability organization.  These will usually have “talking points” and sometimes a sample letter to use.  That way families can know what the key concerns are that need to be addressed.  Parents can also serve on the committees or boards of these organizations. 

Another good way to raise awareness of an issue is to write a letter to the editor of your local paper.  Make sure to follow the guidelines like word count for length, etc.  Also, be careful about divulging too much private information because your name/address will be used for publication. 

Contacting state or federal legislators, and making public comments at boards of education or hearings on issues such as Maternal and Child Health Block Grant application hearings, is another way to get involved.  Usually these are for systemic, not individual issues, but if parents have tried everything else speaking up in these forums could be a good last resort for help.  So for example if the issue is in a child’s school and is happening to other families, parents can speak at their district board of education.  If it’s a more widespread issue happening statewide in special education, families can speak at the state Board of Education meeting.  If the issue is about Medicaid, participating in or attending – and speak up at – HMO Advisory meetings, or State Medicaid Advisory Councils, can help parents tell their own stories to achieve a public policy purpose that will help many other families.  Again, action alerts from disability organizations will help families know when there are opportunities to testify.

 Where to Find Advocacy Opportunities 

For education, each state has a designated Parent Training and Information Center.  They help parents with individual advocacy but also with systemic issues.  For healthcare, there are Family Voices/Family-to-Family Health Information Centers in each state.  For family support for developmental disabilities, there are governor’s councils in each state.  Disability Rights (also known as Protection and Advocacy) agencies help with individual advocacy but also systems issues.  Disability organizations like The Arc, or even those that just cover a single disability like autism, can be good places to get information on issues affecting children with special needs.  Once children are older (age 14 and above), Centers for Independent Living are good places not just for individual help but addressing systemic issues regarding independent living.  It is also important that families help their child learn to self-advocate.  Wrightslaw has a publication for families titled “From Emotions to Advocacy.”  There is also a free online course called “Serving on Groups.” Lastly, there is another free online course for families called “Partners in Policymaking” which helps parents to learn how to advocate effectively. 

Family caregivers need to remember that by advocating for their child they are making some progress in whichever system is serving their child.  But by getting involved in systems advocacy, they are helping change everything for everyone.  Family caregivers can help not only their child but other families of children with disabilities, through systems advocacy.

Parent Training and Information Centers

Family Voices/Family-to-Family Health Information Centers

National Association of Councils on Developmental Disabilities

National Disability Rights Network
National Council on Independent Living
Wrightslaw “From Emotions to Advocacy”
Serving on Groups – free online course
Partners in Policymaking – free online course

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