Families Strained By Caregiving Responsibilities, Survey Finds
A snapshot of thousands of caregivers across the country finds them overwhelmed by the demands of their loved ones with developmental disabilities and deeply concerned about the future.
In a survey of more than 3,000 caregivers, 95 percent said they were stressed out with nearly half describing themselves as very or extremely stressed.
Family members and friends reported spending an average of 57 hours each week in a support role for those with disabilities assisting with everything from feeding to dressing, providing behavior supports and managing finances. Caregivers said these obligations are affecting their abilities to address personal needs, tend to other family duties and stay afloat professionally.
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The findings come from the Family & Individual Needs for Disability Supports, or FINDS, Community Report released this week by The Arc and The University of Minnesota’s Institute on Community Integration. It’s based on responses from 3,398 unpaid caregivers across the country who responded to an online survey conducted between January and April 2017.
Of those polled, 80 percent identified as a family member who lived with a person with an intellectual or developmental disability. More than half said they had no plan for what would happen to the person they support in the event that they are no longer able to provide care.
About a quarter of caregivers said their loves ones were on waiting lists for government-funded services. Those surveyed reported difficulties finding help from direct support professionals or through respite care.
Many caregivers said they had to reduce their work hours, decline promotions or quit altogether in order to provide care.
Overall, the report authors concluded that their findings “reflect the ever-increasing reliance on families to provide the bulk of supports to individuals with IDD.”
“In every aspect of life — from education, to employment, to planning for a stable future — we as a society are failing in our support of caregivers of people with disabilities and falling short of our obligation to improve the quality of life of people with disabilities,” said Peter Berns, CEO of The Arc.
“This report paints a picture of the day-to-day needs of caregivers, and should ignite action to address the gaps that stop us from achieving full inclusion of people with disabilities in the community throughout their lifetime,” Berns said.