National Sibling Survey

General

KristinaMajewskiFamilyThe Sibling Leadership Network is conducting an online survey about the support needs of siblings with disabilities. Please share your perspective as a sibling through the survey.  Also, feel free to encourage your other siblings and family members to complete the survey as well.  The survey is available in English and Spanish.

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1 Comment. Leave new

  • Christine Taylor
    February 23, 2015 10:55 am

    It is our experience that those with DD/ID in the aging community are not just underserved they are UNserved. My brother @50 with Ds and Alzheimer’s disease is expected to live in an environment that the “system” has created for young adults and based on the system’s idea of person centered programming. The fault in that thinking bears out in the aged population when being attended to by untrained and unfiltered people who are further ill equipped when the complications of AD/dementia clouds the previous focus of care. There is no shift, and when faced with a different need we have been responded to with needing to lower our expectations.
    Caring for my aging sibling’s caregivers has become a full time job. Providing documentation that is not being read . Training materials that are not being utilized and resources being ignored.

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