With fewer and fewer services available for individuals with developmental disabilities, a survey of thousands of caregivers across the country finds families increasingly strained.

Caregivers say they’ve taken on more themselves and the quality of life for the person they support has declined since the COVID-19 pandemic upended many disability services.

Nearly all caregivers report that they are stressed with a growing number indicating that they are “very stressed.” More than half say that they are very or extremely stressed.

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The findings come from a survey of more than 3,100 family members or friends who provide care to individuals with intellectual and developmental disabilities nationwide that was conducted by The Arc and the Research and Training Center on Community Living at the University of Minnesota.

The questionnaire was completed in January and February 2023 and the results were released late last year. The survey is a follow-up to similar ones in 2010 and 2017.

“Challenges existed for families in 2017,” said Lynda Lahti Anderson, a research associate at the Research and Training Center on Community Living who led the survey. “It’s just gotten worse.”

More than 80% of family caregivers said that they are providing more supports because services are less available than they used to be.

Caregivers are more likely to report that they quit their jobs to support a family member with developmental disabilities than they were just a few years ago. And, a majority indicated that they are paying more out-of-pocket for services.

Of those surveyed, 70% said the person with developmental disabilities that they support lives with them and just shy of half said the individual received in-home supports. About a third are on waiting lists for services.

Respondents were more likely than in 2017 to indicate that the person they support no longer has a job, a job coach, transportation or that they’ve lost paid support people due to a lack of funds.

About three-quarters of caregivers said that the person they support is not able to go out as much as they used to and does not talk to as many people as they used to.

The survey “paints a sobering picture of the often overwhelming experience of caring for a loved one with intellectual and developmental disabilities in the United States,” according to Julie Ward, senior executive officer of public policy at The Arc. “Every day, caregivers are battling service cuts, waiting lists and workforce shortages, in addition to a lack of support and reprieve for themselves.”

“We hope this survey shines a light on the dire need for federal and state investment in supports and services,” she said.

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