Research Guides: Autism Resources: Family Support Orgs, Councils, & Policy Making

Family Support Organizations

Long-term Care Scorecard
Long-term care scorecard—Families of individuals with higher support needs are likely to need long-term support services in adulthood. And when they do, there is source to find state-level LTSS system performance from the viewpoint of users of services and their families.
Maternal and Child Health Bureau (MCH)
Parent to Parent USA
Parent to Parent USA—matches you with another parent with a child similar to yours and they mentor each other. States that do not currently have a Parent to Parent Program are welcome to contact neighboring states P2P. Illinois is surrounded by P2P states. So your patrons might have their pick!
Siblings Leadership Network

Representatives & Senators

To find federal representatives, senators, and state representatives, visit:

https://www.house.gov/representatives/find-your-representative

https://www.senate.gov/senators/index.htm

Councils & Policy Making

Partners in Policy-making (PIP)—some Developmental disability councils oversee a program called Partners in Policy-making. Parents of children with disabilities, family members, and adults with disabilities learn how to make positive change in their communities, including legislative advocacy. Wisconsin, Minnesota, South Dakota, Georgia, Florida, Pennsylvania, and Missouri all have a partners program.

Developmental Disability Councils
Each state has 1 Developmental Disability Council. The DD councils receive federal funding to support programs that promote self-determination, integration, and inclusion for all people in the United States with developmental disabilities.
The Association of University Centers on Disabilities (AUCD)
The Association of University Centers on Disabilities (AUCD) and its smaller branches, University centers on excellence in developmental disabilities (UCEDDs)--is more on the academic side with an emphasis on data-driven, evidence-based practices. They also run their states’ LEND programs that train future caring professionals. Such as Speech pathologists, Occupational Therapists, nurses, psychologists etc. Stands for Leadership and Education in Neurodevelopment.
National Council on Independent Living
National Council on Independent Living (NCIL) advances independent living and the rights of people with disabilities. NCIL envisions a world in which people with disabilities are valued equally and participate fully.
National Resource Center on Supported Decision-Making
Supported Decision-making is a legal alternative to Guardianship. What supported decisions making does is provide a middle ground if the person needs help with some aspects of life, but not with others. For instance, maybe a person needs help with medical decisions, but retains the right to vote. Or they need help managing money and/or have a representative payee—but can manage their academic life just fine. Supported Decision-making laws originated in Texas—so searchers will find Texas organization an information rich source. In addition, Wisconsin recently passed supported decision-making legislation as well. If other states are looking for models on how to pass SDM legislation in their state, they can look to these 2 states.
National Guardianship Association
National Guardianship Association—sets a quality of standards for guardianship.
National Guardianship Association Position on Supported Decision-Making
Their position on supported decision-making.