A nationwide survey of caregivers of those with developmental disabilities is offering new evidence this week of the hardships many families face in accessing support services.
The results of the survey released Tuesday in a report from The Arc show one in three families are on waiting lists for some type of government-funded service — ranging from personal assistance to respite care and housing — and they’re likely to remain in limbo for an average of over five years.
The survey, which was conducted last year, culled responses from nearly 5,000 caregivers from across the country.
Most adults with developmental disabilities are living with their parents and have no alternate housing plans for the future, the findings indicate. The majority lack high school diplomas and 85 percent are unemployed.
Their parents are feeling taxed financially and emotionally. One in five families said someone had to quit their job in order to provide care. And more than 80 percent of caregivers said they put their own retirement in jeopardy because they used savings to fund services for a loved one.
What’s more, the vast majority of caregivers report feeling tired and stressed some or most of the time. Nearly half say they have more caregiving responsibilities than they can handle, according to the report.
“The future is uncertain for these individuals and their families,” said Peter Berns, CEO of The Arc, who called the situation a “train wreck waiting to happen.”
“Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more,” Berns said.