Cuts to services for people with disabilities are having a devastating effect on families who are draining savings accounts and selling assets to pay for their children’s care. Adults who have lost assistance are struggling to meet even basic needs. But until state legislators find a way to raise revenues, their challenges will continue. That was the message self-advocates and families took to the capitol in April during a series of events centered on the annual Disability Day at the Capitol April 25.

The legislative session adjourns May 20. As Access Press went to press, legislators and Gov. Mark Dayton were continuing to work on the tax bill. Numerous potential revenue sources are in play, ranging from increased income on the wealthiest Minnesotans to taxes of clothing, cigarettes, many consumer services and even over-the-counter drugs.

Most disability advocacy groups, including the Arc Minnesota, are staying neutral as to how the state should raise revenues. But they are urging that something be done.

“For a decade, Minnesota often cut disability services to help balance the state budget,” said Steve Larson, senior public policy director of The Arc Minnesota.

“People with disabilities and their caregivers saw hundreds of millions of dollars in funding reductions, service reductions and fee hikes.” He and others are asking that the disability community be spared further cuts.

Larson said he and others were “surprised and shocked” when House and Senate health and human services budget proposals showed a $150 million cut.

One issue is parental fees, which affect about 8,000 families statewide. Parental fees coupled with high out-of-pocket costs are hitting families hard. Over the past two years the Kasemodel family of Excelsior has had to withdraw more than $800,000 from retirement savings, to survive the recession and help pay for their son Thomas’ needs. He is 15, lives with multiple medical conditions and autism. Gastrointestinal issues have resulted in very aggressive behaviors when he is in pain.

Tim Kasemodal, Thomas’ father, said the family had to place Thomas in a group home in spring 2011. Then their family was hit by salary cuts. “Parental fees go up immediately with increases in incomes, but decreasing them due to local income is a cumbersome process, and the decrease is sometimes minimal,” Kasemodal said. “Fees for Medical Assistance services are not adjusted unless your income drops by over 10 percent.” His family’s parental fees are at the same level or exceed their federal income tax each year.

The Kasemodels also pay high out-of-pocket costs for out-of-state medical treatment and supplements for Thomas. The nutritional supplements alone cost almost $400 per month, a cost not covered by insurance or Medicaid. Co-pays for medication are covered by insurance but not by Medicaid. Parents can seek a credit for out-of-pocket expense but only after a long appeal process.

“Does it seem fair that the current parental fee calculations only add to the financial hardship of families already struggling with such tough financial decisions?” Kasemodal said. He is urging state lawmakers to reduce parental fees. “Does it seem fair to balance the budget on the backs of already financially and emotionally drained parents?”

Other families are also struggling to pay for therapies which benefit their children. Apple Valley resident Kelly Kausel has an autistic son. Noah Kausel is four and has benefitted greatly from applied behavior analysis or ABA therapy. He interacts with other people and can go out in public without being afraid.

But after a private insurance provider stopped paying for Noah’s therapy, the family had to apply for Medical Assistance. “From a financial standpoint, the cost of treating young children with autism using applied behavioral therapy is actually a huge cost savings to the state,” Kausel said. “It’s a lot easier and less expensive to treat people when they are children.” Kausel is asking state leaders to fund early intervention programs and that insurance coverage for therapies be mandated. Kausel also asked that a $12 million allocation for early intervention be supported, as proposed by Dayton.

For updates in the final days of the session, go to Larson’s blog on The Arc Minnesota website, at http://tinyurl.com/Larson-blog  

Another source of information is the Minnesota Consortium for Citizens with Disabilities blog, at http://mnccd.org/?page_id=344