Family Support Organizations
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.
MCHB is part of the Health Resources and Services Administration (HRSA), an operating division of the U.S. Department of Health and Human Services. Their mission is to improve the health and well-being of America’s mothers, children, and families. MCHB administers programs, supports research, and invests in workforce training to ensure the health and well-being of mothers, children, and families across their lives. In partnership with states and communities, the Bureau supports health care and public health services for an estimated 60 million people nationwide.
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.
The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
Representatives & Senators
To find federal representatives, senators, and state representatives, visit:
Councils and Policy Making
Partners in Policy-making (PIP)—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.
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) 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 (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.
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—sets a quality of standards for guardianship.
