Access Living Youth Center - Parent and Guardian Advocacy 101

Parent and Guardian Advocacy 101

There are many good and free sources of information and assistance available to parents and guardians of young people with disabilities. Every young person with a disability deserved as many opportunities as possible, and every day there are parents, guardians and advocates fighting to make sure that those opportunities happen.

Our educational and health care systems are not perfect, and the problems faced by kids with disabilities can be very complex. This article is intended as a starting point for your own research. A good rule to remember when looking for resources for your young person is to always double check to make sure your information is good. Information can vary from state to state, so be sure to check whether a success story in another city would work in your city too.

Because Access Living is based in Chicago, we know our Chicago resources best. If you are not from Chicago, ask around your town or state to see if similar services or resources are available in your area.

A top resource for any parent or guardian is the local Parent Training and Information Center (PTIC). A PTIC gets grant money from the federal government to train and help parents and guardians advocate for their children with disabilities. Family Resource Center on Disabilities (www.frcd.org or (312) 939-3513) is the PTIC for the Chicago area.

A second good resource for parents and guardians, especially in cases of disability discrimination, is your state Protection and Advocacy Agency, or P&A. A P&A receives federal money and is mandated by law to advocate for the rights of people with disabilities. Equip for Equality (www.equipforequality.org or (312) 341-0022) is the P&A for the state of Illinois. To find your state’s P&A, visit http://www.acf.dhhs.gov/programs/add/states/pas.html .

A word about legal advocacy: if you are debating whether to advocate for your child by suing, make sure you have exhausted all other possible ways to advocate. Lawsuits can take a long time to create and settle and are usually not a quick fix to problems. Money can be a factor, and you may have to look for lawyers willing to do pro bono work, or work for free.

The two most important laws to know about for special education advocacy are the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. Your PTIC is a good place to start learning about these laws and how they affect your child’s IEP and access to school services. There are also many places on the Internet where you can learn more about these laws.

Community advocacy groups will also often be aware of trainings or conference in special education and healthcare advocacy. Consider joining their e-mail or mailing lists to stay on top of current news and learning opportunities. Trainings and conferences are also good ways to network with other families who have similar experiences.

No matter where you live, there are some websites that offer important resources nationwide. The National Dissemination Center for Children with Disabilities (NICHCY) at www.nichcy.org, has a great deal of information parents and guardians should know. In addition, Wrightslaw at www.wrightslaw.org provides some good information on your child’s legal rights and advocating for those rights.

If your child is high school age, one option we strongly recommend is finding way to teach your young person to advocate for themselves. After graduation, and in the real world, your child will find themselves in many situations. Access Living has several support groups that support youth in advocating for themselves and teaching leadership skills.

Other terrific organizations across the nation that support self-advocates include Advocating Change Together (ACT) http://www.selfadvocacy.org/ , which has a great e-mail list. There is also Kids As Self Advocates (KASA) http://www.fvkasa.org/ specifically for young people, as well as Self Advocates Becoming Empowered (SABE) http://www.sabeusa.org/ for people with disabilities of all ages.

For parents of children who are D/deaf or hard of hearing, try looking at Hands & Voices as a start: http://www.handsandvoices.org/ . Try also looking up the National Association of the Deaf www.nad.org to see what issues are affecting Deaf and hard of hearing people today.

For more information, readers are invited to contact Access Living at (312) 640-2100 to learn more about information for parents and guardians. We are here to empower YOU in your advocacy efforts!

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