Emily Criss, who has developmental disabilities, with her mother Elizabeth. Family caregivers of people with developmental disabilities are more likely to report higher levels of stress than just a few years ago. (Hans Gutknecht/Los Angeles Daily News/TNS)
With fewer and fewer services available for people with developmental disabilities, a survey of thousands of caregivers across the country finds that families are increasingly strained.
Carers say they have taken on more responsibilities and the quality of life of the person they support has decreased since the COVID-19 pandemic disrupted many disability services.
Almost all caregivers report that they are stressed, with an increasing number indicating that they are “very stressed.” More than half say they are very or extremely stressed.
Advertisement – Continue reading below
He recommendations They come from a survey of more than 3,100 family members or friends who care for people with intellectual and developmental disabilities nationwide, conducted by The Arc and the University of Minnesota Community Living Research and Training Center.
The questionnaire was completed in January and February 2023 and the results were published at the end of last year. The survey is a follow-up to similar ones carried out in 2010 and 2017.
“There were challenges for families in 2017,” said Lynda Lahti Anderson, a research associate at the Community Living Research and Training Center who led the survey. “It’s just gotten worse.”
More than 80% of family caregivers said they are providing more support because services are less available than before.
Caregivers are more likely to report leaving their jobs to support a family member with developmental disabilities than they were just a few years ago. And most indicated they are paying more out of pocket for services.
Of those surveyed, 70% said the person with developmental disabilities they support lives with them and just under half said the person received support at home. Approximately one-third are on waiting lists to receive services.
Respondents were more likely than in 2017 to indicate that the person they support no longer has a job, a career coach, transportation, or that they have lost paid support people due to lack of funds.
About three-quarters of carers said the person they support can’t go out as much as before and doesn’t 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 director of public policy at The Arc. “Every day, carers struggle with service cuts, waiting lists and workforce shortages, as well as a lack of support and respite for themselves.”
“We hope this survey sheds light on the dire need for federal and state investment in supports and services,” he said.
Read more stories like this. Subscribe to Disability Scoop’s free email newsletter to get the latest news on developmental disabilities delivered right to your inbox.
