Still remaining in the shadows with their future uncertain

People with intellectual and developmental disabilities and their families have many unmet needs and inadequate opportunities to lead productive lives in their communities, according to a national survey.

Sixty-two percent of caregivers surveyed reported a decrease in services for their family member with a disability. State budget proposals threaten this further.

“Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities out of the shadows, so they could live in and contribute to their communities. We have worked hard in Minnesota to make this vision a reality,” said Pat Mellenthin, Chief Executive Officer of The Arc Minnesota. “Sadly, we have evidence that not nearly enough progress has been made to create the opportunities that make life in the community possible.

Minnesota budget proposals could do more damage, and there is further uncertainty due to a budget stalemate and state shutdown.

Mellenthin said it creates a more uncertain future. “It will undermine decades of effort we have made to provide services that create better lives for people with disabilities at a better value for our tax dollars,” she said.

“Still in the Shadows with Their Future Uncertain” was prepared with data from the Families and Individual Needs for Disability Support (FINDS) survey. Responses from all 50 states include 5,000 parents, other caregivers, and people with disabilities on their educational, housing, employment and support needs.

Among the findings:
•One out of five families said someone had to quit a job to stay home and support the needs of a family member.
•62 percent of parents/caregivers don’t know if services will be available once they can nolonger provide care.
•62 percent reported that existing services in the community are being cut.
•43 percent said schools have cut physical, occupational or speech therapies.
•More than 75 percent of families report problems accessing community supports, trained reliable homecare providers and other resources.
•80 percent of families reported they don’t have enough money to pay for the support or care their loved one needs.
•Nearly half (46 percent) said they have more caregiving responsibilities than they can handle.
•85 percent of families reported that adult family members with developmental disabilities weren’t employed, either part-time or fulltime.
•The percentage of people with disabilities in Minnesota who are unemployed is 80 percent.

Antonietta Giovanni, Minneapolis, sees an uncertain future. Her son Danny, who has autism and significant communication and behavior challenges, lives with her. Recently he started having seizures. To keep him at home and pay her mortgage, she is paid to provide his daily care and attend to his significant needs. “If I lost the wages that I’m paid right now” she said, “I don’t know if I could keep my house, and I don’t want to place Danny outside of the home. I want to keep him here at home with me. These cuts don’t make financial sense. I save the state money by having Danny at home. The services he receives now cost less than if he were receiving them in a group home.”

Sarah Gonnella also faces uncertainty. She lives at home with her parents, Pam and Joe Gonnella. At age five, Sarah contracted a virus that caused severe brain damage. Now 28, she requires 24-hour care. Staff comes in seven or eight hours each day to supplement the care her parents provide. “When Sarah got sick, Joe and I promised that we would give her as normal a life as we could,” Pam said. “But physically, we’re wearing out, and Sarah’s needs aren’t decreasing.

We’ll try to do it as long as we can, but we do need help. Given all the proposals at the state and federal level to cut services, though, we wonder if that help will be available when we’re no longer able to care for Sarah.”

For the complete report and the full FINDS survey results, go to www.arcmn.org

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