Family Outcomes of Long Term Supports and Services for Family Members with Intellectual and Developmental Disabilities

/in , , , , /by The Arc

This brief reviewed parents’ self-reported experiences with long-term services and support for their family member with IDD and found that caregiver health and level of support needs influenced satisfaction with supports. This brief is based on research conducted by the University of Minnesota, and this brief was produced by the Family Support Research and Training Center (FSRTC).

Sibling Caregivers Experience Less Choice and Control

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This brief reviewed the experience of sibling caregivers compared to other caregivers and found that sibling caregivers generally reported less choice and control around services and supports, as well as lower household incomes despite similar ages. This brief was produced by the Family Support Research and Training Center (FSRTC).

Research Brief: Caregiver Support Amounts

/in , , , , /by The Arc

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

/in , , , /by The Arc

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

/in , , , /by The Arc

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

/in , , , /by The Arc

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

/in , , , , , /by The Arc

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.

/in , , , /by The Arc

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

/in , , , /by The Arc

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.