The Arc supports families of individuals with intellectual and developmental disabilities. They have been instrumental in passing state and federal legislation regarding individuals with disabilities. Their broad network includes state and local chapters.
Centers for Disease Control and Prevention (CDC) provides some information.
Easter Seals helps with early intervention, inclusive childcare, medical rehabilitation and autism services for young children and their families; job training and coaching, employment placement and transportation services for adults with disabilities, including veterans; adult day services and employment opportunities for older adults – in addition to a variety of additional services for people of all ages including mental health and recovery programs, assistive technology, camp and recreation, caregiving support including respite – and much more.
Directory of Independent Living Centers. Listing of living centers and resources for every state.
Human Services Research Institute focuses on helping those with developmental disabilities navigate evaluation, quality improvement, systems design, data collection and analysis, and technical assistance and training.
National Association of State Directors of Developmental Disabilities. Described as “Driving Innovation in Public Services for People with Intellectual and Developmental Disabilities,” there’s much information here including a list of state agencies that may be of help.
National Down Syndrome Society advocates the value, acceptance, and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
Special Olympics provides “year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.”
University of Minnesota Research and Training Center on Community Living provides research summaries from 2013-2018 focused on the needs of individuals with intellectual and developmental disabilities. They explore issues surrounding social inclusion, residential services, family-focused long-term services and support (LTSS), transition to community life, employment, self-determination, and LTSS outcomes and public policy. This work was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Youth Nursing Homes for Children With Disabilities provides information about childcare options for children with developmental disabilities.
Florida
Center for Autism and Related Disabilities (CARD) serves individuals of any age with a variety of disorders relating to autism and other disabilities through seven regional CARD programs throughout the state.
Tennessee
Tennessee Disability Pathfinder provides support services and training including multicultural education.
Vanderbilt Kennedy Center helps find discoveries and best practices that make positive differences in the lives of persons with developmental disabilities and their families. Services are offered to people with disabilities, families, educators and healthcare, and other service providers. Programs apply the latest knowledge obtained through disabilities research and provide service models.
Books
Teaching Students with Severe Disabilities by David L. Westling and Lise L. Fox.
Papers
American Academy of Pediatrics. “Out-of-Home Placement for Children and Adolescents With Disabilities—Addendum: Care Options for Children and Adolescents With Disabilities and Medical Complexity.” Sandra L. Friedman, MD, MPH, FAAP, Kenneth W. Norwood Jr, MD, FAAP, COUNCIL ON CHILDREN WITH DISABILITIES. Retrieved at https://pediatrics.aappublications.org/content/pediatrics/138/6/e20163216.full.pdf.
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