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Disability advocates bring families to Capitol to urge legislators to stop cutting services

Advocates for those with disabilities and families with children who are disabled spoke at the Capitol Tuesday.
Photo courtesy of The ARC of Minnesota
Advocates for those with disabilities and families with children who are disabled spoke at the Capitol today.

While lawmakers continue to work through a billion-dollar state deficit, advocates for those with disabilities are keeping up pressure on the governor and legislators to stop making cuts to services that allow many disabled people to live and work independently.

Several families came to the Capitol today to tell how the cuts are affecting their children's ability to thrive and live on their own. Without adequate state assistance to these families, many could end up in state institutions at a much greater cost to taxpayers, advocates said.

Further budget cuts expected this session — and cuts from previous years — are now being felt with many people with disabilities. Many now get fewer hours of assistance from personal care attendants, and long waiting lists remain for those trying to move into independent living situations, where they could get daily living tasks so they can hold jobs.

Legislators are waiting until near the end of the session — when they'll know better how much they need to cut — to finalize budget changes for health and human services programs used by those with disabilities. Even with hoped-for federal assistance, more cuts are expected this year, and — unless there are major changes in the way services are provided — much deeper cuts may be needed in the next biennium.

ARC of Minnesota, which works with developmentally disabled people, brought families to the Capitol today to tell their stories of how those cuts have affected their lives.

** Betsy Davies of Richfield brought her four adopted children and one foster child — all with disabilities — and said before she finalized the adoptions she was assured of state and county help with the children's extensive care. But cuts have now left her 15-year-old son — who has multiple disorders and learning disabilities has been helped with personal care attendants 62 hours a week in recent years — with only 31 hours of help a week.

And her 10-year-old son, abused and neglected before he was adopted, may also face cuts in his hours with an attendant. "A cut in hours could be devastating to meeting his needs, and I fear what the consequences will be," she said.

Her three younger children also have medical and emotional problems that need much care.

"We can't go on family outings because we don't have the supervisory assistance we need ... It is hard to even leave a room without having proper adult supervision for the children," she said.

** Kathy Sanders of Coon Rapids told about her 22-year-old daughter who needs 24-hour care because of her disabilities and has been getting 13 hours a day of Personal Care Assistance so Sanders can work full time. But state cuts mean she only gets 6.5 hours of assistance a day. At the same time, Sanders is helping care for her ill, aging parents, and has health problems of her own.

"I'm not here today to ask for sympathy, but to try to give some understanding of how these PCA cuts are affecting our lives and what it means to us. I'm just a parent trying to do right by my daughter, help her become as independent as possible, and keep our family together," she said.

** Steve Hayes, Plymouth, told about his 19-year-old son with developmental disabilities that leave him unable to talk or communicate. He also has epilepsy but is mobile and so needs constant supervision in addition to help with eating, dressing and other daily activities. Hayes said he and his wife can't go out together, even to church, because one has to be home with their son.

Their son is on a waiting list to get into a program where he could have constant care but still live in the community. But there are more than 4,000 people ahead of him on the list, Hayes said, and it could be years before there is an opening if legislators don't change the system.

Said Hayes:

We love Brett and have made many sacrifices to care for him and keep him in our home. It’s easy to talk about the physical and financial sacrifices. It’s more difficult to capture the emotional losses that are part of our everyday lives. We have never gone on a family vacation. My wife and I were unable to visit our oldest daughter at college during the last 4 years (as a couple), because one of us had to stay behind to care for Brett. For years we went to separate church services. And we are always the first to leave a social event in the evening. You get the picture. We don’t get to experience much spontaneity in our lives. And our situation is not unlike many other parents of children with disabilities.

Pat Mellenthin, executive director of The ARC of Minnesota, said budget cuts that disproportionately affect the most vulnerable people in the community are "an affront to Minnesota values."

She urged legislators to work with advocates to find ways that are more efficient and cost-effective than current programs, so that the state can save money while at the same time allowing independence to the many people with disabilities who — with a little help — can work and contribute to society.

Steve Larson, a lobbyist for ARC, said many legislators are interested in developing flexible programs that can bring better services to those with disabilities at a lower cost to taxpayers.

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