Supporting Families of Individuals With IDD: The National Community of Practice

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The National Community of Practice for Supporting Families of Individuals of IDD originally began in 2012 as a project funded by the Administration for Intellectual and Developmental Disabilities. Participating states have changed the front door into the system, improved cultural considerations in supporting families, guided and influenced policymakers and helped shape waivers and other Medicaid authorities to focus on supporting families and individuals throughout the lifespan. The National Association of State Directors of Developmental Disabilities Services (NASDDDS), along with the University of Missouri Kansas City Institute for Human Development (UMKC IHD), partner to support states, work to impact national policies, develop products and tools, and provide technical assistance. One of the key resources developed is the LifeCoure framework, which promotes the idea that all people have the right to live, love, work, play, and pursue their life aspirations in the community.

2018 Support Needs of People with IDD and Co-Occurring Mental Health Challenges and their Families

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Up to 40% of individuals with intellectual and developmental disabilities (IDD) experience co-occurring mental illness, with some estimates pointing to even higher prevalence rates. Despite its large presence in the community, little is known about how to support families, caregivers, and direct service providers in meeting the needs of individuals experiencing mental illness and IDD.

To further explore the challenges people with IDD and mental illness and their families are facing and what support is needed, The Arc’s Center for Future Planning convened five focus groups in Colorado, Wisconsin, and Oregon. The Arc also worked with Boston University to put together a national panel of young adults with co-occurring issues and professionals in the field to explore challenges that young adults with co-occurring issues face when accessing health care services.

Read the brief to learn about the important findings and recommendations, including the need for more training for professionals, systems change activities, new research, and greater public awareness around IDD and mental health issues.

National Association for the Dually Diagnosed (NADD)

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NADD is a not-for-profit membership association established for professionals, care providers and families to promote understanding of and services for individuals who have developmental disabilities and mental health needs. The mission of NADD is to advance mental wellness for persons with developmental disabilities through the promotion of excellence in mental health care.

NADD is recognized as the world’s leading organization in providing educational services, training materials and conferences. NADD has been influential in the development of appropriate community based policies, programs and opportunities in addressing the mental health needs of persons with ID/D.

National Alliance on Mental Illness (NAMI)

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NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI also offers a helpline to respond to requests to people in need nationwide.

The National Task Group – Early Detection Screen for Dementia

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This screening tool can be used to help detect changes in adults with intellectual disability who are suspected of or may be showing early signs of mild cognitive impairment or dementia. This form can be completed by family members, staff, or other supporters who know a person well. This screening was created by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The goal of the NTG is to advocate for services and supports for people with IDD and their families who are affected by dementia.

National Task Group on Intellectual Disabilities and Dementia Practices

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The NTG produces materials related to dementia, including practice guidelines, screening tools, education and training curricula and workshops, agency and family-based information, and other technical materials – as well provide technical assistance.

The NTG is affiliated with the American Academy of Developmental Medicine and Dentistry and other partners, such as various university centers and national associations and organizations.

Alzheimer’s Disease and Down Syndrome

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Pages 15-16 of this guide provide a series of questions that families members, staff, or other supporters may complete. This can help you and your family keep track of the baseline abilities that a person has and consider what changes have occurred to a person’s ability to do everyday tasks, skills and hobbies, memory, behavior, language and communication ability, personality, and mood from day to day. This guides was created by the National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices.

National Policy Matters: ABLE Accounts for People With Disabilities

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More detailed answers are also available for people who want or need more information. In addition, for people who want actual references to the law, regulations, or other policy, endnotes and references are included. This review of the ABLE program does not go into detail on the tax treatment and implications of opening an ABLE account.

National Resource Center for Supported Decision-Making

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The National Resource Center for Supported Decision-Making provides education and training on how supported decision-making is used around the country, including supported decision-making and guardianship rules in each state.