June 16, 2011 / 7:35 PM / 6 years ago

Corrected: Financial, emotional toll of caring for disabled

(Corrects name of group in fifth paragraph to The Arc instead of ARC)

BOSTON (Reuters) - A majority of mentally disabled adults live with their aging parents, most of whom have not planned for new living arrangements as they grow older, a report released on Tuesday showed.

One in five of those families reports someone has quit a job to stay home as a caregiver, according to the survey of nearly 5,000 parents, caregivers and siblings.

That often means dipping into retirement savings to cover bills and stay afloat, according to the report by The Arc, a human rights and social services organization.

The financial toll of caring for an adult with intellectual or developmental disabilities is rivaled only by the emotional drain, the survey showed.

“It is imposing a tremendous strain and stress on families,” Peter Berns, CEO of The Arc, told Reuters.

“Caregivers are physically fatigued, emotionally stressed and financially stressed as well. They need help,” Berns said.

An estimated seven to eight million people in the United States have intellectual and developmental disabilities, including autism, Down syndrome and as many as 200 diagnosed conditions, the group said.

Conditions tend to arise during childhood and affect a person’s functional abilities. In the case of intellectual disabilities, that results in a lower IQ, Berns said.

Caregivers provide a range of support from bathing and cooking to providing transportation, arranging social activities and offering financial stability.

Some 85 percent of adults with intellectual and developmental disabilities are unemployed and about 50 percent did not earn a high school diploma.

Most live with their parents. Because caregivers play such an integral role in the daily lives of adults with disabilities, uncertainty looms about who will fill those shoes when family members are no longer able to do it.

The study showed that nearly 60 percent of family caregivers are aged 51 to 79, with 62 percent of respondents saying they have not planned for new living arrangements as they get older.

Berns said some families have made arrangements for their loved one to live in a group home or their own apartment in the community. Otherwise, outside the family home, “there is no safety net in place,” he said.

There has been tremendous progress over the last 50 years, said Berns, with respect to the abilities and achievements of adults with these disabilities.

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