Research Brief: Caregiver Support Amounts

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The 2010 Family and Individual Needs for Disability Supports Survey (FINDS) conducted by The Arc (2011), shows that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities (IDD). Caregivers provided an average of nine different kinds of support and more than half of all caregivers reported providing these supports more than 40 hours per week. More than half of caregivers in this survey reported being aged 50 or older, highlighting the critical need to start planning for a future when aging caregivers are no longer able to continue providing significant amounts of support for their family members

Research Brief: Caregivers of Adolescents With Disabilities

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This brief reviews research gaps that caregivers of adolescents with disabilities experience, including service design and delivery, impact on siblings, diversity, family support interventions, and the positive impacts of caregiving. This brief was produced on behalf of the Family Support Research and Training Center.

Research Brief: Caregivers of Older Adults With Disabilities

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This brief reviews research gaps that caregivers of older adults with disabilities experience, including experiences of diverse caregivers, a need for more diverse research methodologies, and a need for systemic support of a whole family. This brief was produced on behalf of the Family Support Research and Training Center.

Research Brief: Caregivers of Children With Disabilities

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This brief reviews research gaps that caregivers of children with disabilities experience, including research on non-mother caregivers, access to and use of services, diverse communities, and employment policies. This brief was produced on behalf of the Family Support Research and Training Center.

Employment Outcomes and Paid Leave for Caregivers of Adults With Intellectual or Developmental Disabilities

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This combined with challenges around the caregiver’s own health pose greater challenges for caregiver in their retirement and the ongoing support of their family member. This brief is based on research conducted by the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc in 2017, and was published with the Family Support Research and Training Center.

Caregiving in the U.S.

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The typical higher-hour caregiver (who provides unpaid care for at least 21 hours a week) has been caregiving for an average of 5-1/2 years and expects to continue care for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent).

With an average household income of $45,700, caregivers report not only emotional strain, but financial strain. Higher-hour caregivers report difficulty in finding affordable caregiving services, such as delivered meals, transportation, or in-home health services, in the community for them and their loved ones. Caregivers who live more than an hour away from their care recipient also report higher levels of financial strain (21 percent), perhaps because 4 out of 10 long-distance caregivers report the use of paid help (41 percent).

Differences Between Family Caregivers of Family Members With IDD and Other Caregivers

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In 2017, the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc of the United States (The Arc) conducted an online survey, the Family and Individual Needs for Disability Supports (FINDS) survey. The purpose of FINDS is to better understand the experiences of families who provide supports to a family member with intellectual and developmental disabilities (IDD). In this data brief, we compare caregiving experiences of family caregivers for adults with IDD with those of caregivers who responded to the Caregiving in the U.S. (CUS) survey in 2015 in order to better understand the experiences of caregivers of family members with lifelong disabilities compared to the experiences of caregivers of those who are aging or have acquired disabilities in adulthood. There were some important differences between the groups, including the duration of caregiving and the types of supports provided.

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.