Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Preparing for Transitions

People with disabilities and their families feel empowered by public programs allowing them to direct their own service dollars, but what happens when key support people are no longer available? In the first known study to explore the sustainability of self-directed public services across major life transitions, the Institute on Community Integration and Independent Support Services, Inc., Monticello, New York, surveyed 413 people, most of whom identified themselves as a “natural support,” or someone providing unpaid support to a person with disabilities who directs his or her public services. The report, 2020 Evaluation of Experiences with Self Direction in New York State: A Focus on Sustainability, (www.bit.ly/3oRNMel) found that about 40 percent of respondents said siblings would not be available to provide supports if the natural support person died or was otherwise unable to continue.

Report cover 202 Evaluation of Experiences with Self Direction in New York State, A Focus on sustainability

Volume 34, Number 3 | Fall 2021​

Feature Issue: Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Issue Editors:

Lieke van Heumen, clinical assistant professor, Department of Disability and Human Development, University of Illinois Chicago

Tamar Heller, distinguished professor and head of the Department of Disability and Human Development, University of Illinois Chicago

Chris Farrell, senior economics contributor, Minnesota Public Radio; columnist, PBS Next Avenue, Minneapolis, Minnesota

Roger Stancliffe, senior research associate, Institute on Community Integration, University of Minnesota; professor emeritus, University of Sydney, Australia

Managing Editor: Janet Stewart

Graphic Designer: Sarah Curtner

Photographer: Pete McCauley

Web Developers: Shawn Lawler, Jonathon Walz

Impact is published by the Institute on Community Integration (UCEDD), and the Research and Training Center on Community Living and Employment (RTC), College of Education and Human Development, University of Minnesota. It is supported, in part, by Grant #90DDUC0070 from the Administration on Intellectual and Developmental Disabilities, US Department of Health and Human Services (HHS), to the Institute; and Grant #90RTCP0003 from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), HHS, to the RTC. Additional support for this issue was provided by Grant #T73MC12835 from the Maternal and Child Health Bureau, HHS, to the Minnesota LEND.

The views expressed are those of the authors and do not necessarily reflect the views of the Institute, Centers or University. The content does not necessarily represent the policy of the US Department of Health and Human Services, or Department of Education, and endorsement by the Federal Government should not be assumed.

For print copies: icipub@umn.edu or visit z.umn.edu/ImpactMag

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