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Still in the Shadows With An Uncertain Future

June 29, 2011 By Tom Judd, Tim Nelson, & Steve Hayes, Guest Commentary

Five decades ago, Minnesota and the nation began to develop an awareness of members in our society who had been long out of public view. President Kennedy talked openly about his sister with intellectual disabilities and called on the nation to bring all citizens with intellectual disabilities “out of the shadows.”

In Minnesota, advocates opened the doors of our state institutions, made us aware of the horrendous living conditions there, and then worked to create a world where people with intellectual and developmental disabilities could live in and contribute to their communities.

Since then, we’ve seen progress in some areas. Legal protections have been passed. In Minnesota, we‘ve worked hard to create services that keep people with disabilities in the community and keep families who have children with disabilities together.

Despite these gains, we are concerned that progress is grinding to a halt, if not reversing. At the national level, we’ve fought hard for the past decade against major cuts to Medicaid, the federal lifeline to people with disabilities and their families. At the state level, we’ve seen disability services cut by hundreds of millions of dollars over the past ten years. At the local level, we see families facing increased stress as they raise their children with disabilities.

Our fears have been confirmed by results from a newly-released, nationwide study. The FINDS (Families and Individual Needs for Disability Support) survey, spearheaded by The Arc, gathered responses from 5,000 parents, other caregivers, and people with disabilities on their educational, housing, employment, and support needs. It found people with disabilities and their families still in the shadows, with a future uncertain:

  • One of five families reported that a family had to quit work to stay home and care for a loved one with disabilities.
  • 62 percent of parents/caregivers didn’t know if services would be available when they could no longer provide care to the loved one they support.
  • More than 75 percent of families report problems accessing supports in their communities and finding trained, reliable staff.
  • In Minnesota, only 20 percent of people with disabilities are employed.

Cost-cutting measures recently approved by the Minnesota Legislature will do further damage to individuals and families:

  • This July, 2,800 Minnesotans with disabilities will lose staff who provide them with personal care.
  • Ninety-eight percent of cuts in the Legislature’s Human Services budget for people with disabilities are made to services that keep people in their homes and in their communities.
  • Because of a freeze on services that help them live in the community, 1,250 Minnesotans with disabilities would end up in nursing homes, often at greater expense.

The Legislature’s budget undermines 40 years of progress Minnesota has made in developing services that create better lives for people with disabilities in their communities. Ironically, services receiving the greatest cuts not only help bring Minnesotans with disabilities out of the shadows, but are often the most cost- effective.

These cuts also target programs that Minnesotans widely support. Overwhelming majorities want our state to provide services that help people with disabilities live in their communities and that support families who raise their children with disabilities at home.

As our state elected officials work out differences on the budget, they must uphold Minnesota’s commitment to our most vulnerable citizens. Minnesotans with disabilities and their families want to live out of the shadows, and our entire state wants them to join us in the light and life of our communities.

Tom Judd of Excelsior serves on the national board of The Arc, Tim Nelson of Champlin is president of the board of The Arc Minnesota, and Steve Hayes of Plymouth is chair of the board of The Arc Greater Twin Cities. The Arc is the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities and their families.

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  • Bernice Vetsch says:

    July 5, 2011 at 5:44 pm

    On July 2, The Guardian of London printed an article describing legal action being taken by nonprofits who serve persons with disabilities against the cuts-much-worse-than-ours government of David Cameron. 

    See the article at

    Their basis for the suit is that the cuts are so deep they will make it impossible for them to conform to England’s Equality Law (akin to our Americans With Disabilities Act) and the United Nations Declaration on the rights of persons with disabilities. 

    The U.N. intended this declaration to serve as a guideline for legislation in various countries, as it was here and in England.

    I have written the Minnesota Council of Nonprofits, the Attorney General’s Office and my representative in the state House to see if they think such a suit might be appropriate (and possible) here.