A well-intentioned plan to provide greater independence to people with disabilities is facing fallout from a surprising bunch:
A small, but vocal group of families and caregivers of people with disabilities.
At the final of four public listening sessions, this one in Rochester in August, parents of children with severe developmental disabilities shared their heightened concern about the state's "Olmstead Plan." The plan seeks to discourage institutional settings in favor of community-based living arrangements.
Olmstead refers to a 1999 U.S. Supreme Court ruling making it unlawful to keep people with disabilities in institutions. Progressive Minnesota was chugging along well without need for a plan until 2011, when a lawsuit was brought against the state for the improper use of restraints at a state-run facility. Now a plan must be in place by Nov. 1.
On paper the effort sounds admirable, and it is for many Minnesotans. Championing the vision of the Americans with Disabilities Act, the plan's subcommittee, formed by Gov. Dayton and led by Lt. Gov. Yvonne Prettner Solon, supports the noble ideal that having a disability "does not mean a person has less desire to make choices about how to live, where to live and who to live with. It doesn't lessen the basic human desire to exert control over one's life."
Sandra Gerdes is all for finding ways to improve the quality of life and independence of those with disabilities. But as executive director of Laura Baker Services Association in Northfield, her concern is the one-size-fits-all assumption.
"For a small subset of people, mostly with developmental disabilities and mental health issues, or severe, severe autism, a community setting could be totally overwhelming," said Gerdes, whose agency has supported people with special needs since 1897.
For them, she said, placement in community housing could be their undoing. Gerdes spoke at the Rochester session and sent a passionate four-page letter to state leaders stating her hope that the final plan will be broadened to offer a full spectrum of options.
Laura Baker serves 100 families, including 30 individuals living in on-campus cottages and another 19 in five well-supervised group homes throughout the pastoral college town. Some have lived there for more than 20 years.
She shared the story of one client who needed six years to prepare to go to the dentist. Another client lived in a locked basement before she moved to Laura Baker. Now she lives with housemates, staff and neighbors. "Her community, on her terms."
Those success stories could be history soon, said Gerdes who is bracing for the possibility that a modern "institutional" setting like Laura Baker could be shut down with Olmstead.
"The state would prefer us to build in the community," she said.
Gerdes' views have shifted since the 1990s, when "you would have heard me talking to members of our board and the community about moving everyone out. My view has changed, because of many of the people we support, and the needs I hear from families."
Karen Larson, whose "charming" 29-year-old son is legally blind and has cerebral palsy, lives at home now. But Larson knows that someday she will be gone, and then what? What community setting, she asks, will have the staff to provide him with the 24-hour-a-day assistance he needs?
"For now and forever," Larson said, "this is who my son is."
Betsy Spethmann has similar concerns. Her 19-year-old son also has cerebral palsy and is blind. Three words in the Olmstead language, "most integrated setting," make her nervous, she said. She wants them to add four more: "most integrated setting … appropriate to the individual."
A setting like Laura Baker, "is the kind of home that we wish for our son," Spethmann said, "when we can no longer care for him."
"We want to be responsive," she said Wednesday. "There are people who haven't had choices and couldn't get out of an institution. For a person living in a group home, that may be the best integrated system for them. All those options will be back on the table."
But state budgetary cuts have made these families' challenge even greater. The latest Health and Human Services budget awarded a 5 percent increase in funding for nursing homes and long-term care, but just a 0.5 percent increase for services for people with disabilities.
The biggest roadblock is the state's moratorium on group homes, in place since 2009.
"It's a killer," said Derek Melby, the father of two young-adult daughters with disabilities. He and his wife, Carrie, are leading a group of parents exploring options as their children grow into adulthood.
"Right now," he said, "we don't have any options. And our girls can't live independently."
In the coming weeks, let's hope state leaders create language respecting a necessary spectrum of care, and that they move quickly to re-establish the group home option, with appropriate oversight and professionalism.
We owe this to families who have been swimming upstream for too long.