Self-advocacy opportunity!

Encouraging my students to develop self-advocacy skills was a huge part of my job when I was a teacher. People with disabilities may need support, but everybody needs to have a voice in making their own life decisions. As a teacher, I felt that one of the most important things I could teach my students was for them to realize their personal power and know how to use their communication skills to convey their wants, needs and opinions.

Researchers from the University of South Carolina are looking for 15 to 24-year-olds who have Spina Bifida, Muscular Dystrophy or Fragile X Syndrome who are willing to share about their school, work, family, and community life in an online survey.

The researchers are looking for information to help identify policies and services needed to be more responsive to the needs and experiences of these youth. Sharing information as part of this research is a great way to advocate for yourself. Let people know what you think, and help guide policy development.

If you are interested and qualify, consider taking the survey. You can also contact Margaret Holland at (803) 434-2365 or Margaret.Holland[at]uscmed[dot]sc[dot]edu to learn more and get any questions answered.


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  1. Patricia Wright Says:

    Nancy – I am sure your colleauge appreciates your help. Support during summer can be a challenge for many families. Your friend can contact Easter Seals information and referral to request information here: Also in Chicago there is The Autism Program of Illinois (of which Easter Seals is a support) that offers parent support in is a wealth of information about programs for individuals with autism. Contact information for the Autism Program of Illinois can be found here:

  2. Nancy Stiles Says:

    My co-worker has an autistic son. I think he is 8 and living in Chicago. She seems to be having a hard time finding summer care for him. Can someone please help…

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