Rule would change options for people with disabilities
More than a hundred people gathered at the Embassy Suites in Newark Monday morning to discuss a new federal rule that could dramatically change options in housing, employment and other basics for people with disabilities.
The new rule is meant to signal the government’s intention to support the rights of people with disabilities to live and work in the least-restrictive environment and discourage any vestige of institutional warehousing. It comes with real teeth, because it will regulate the kinds of services the government will pay for.
“This represents a real turning point in the funding structure,” said Beth Mineo, director of the University of Delaware’s Center for Disabilities Studies, which hosted the event. “In a larger sense, the federal government and the state will put their money where their mouth is.”
At first glance, the rule seems straightforward enough. It defines the kind of settings that the government will recognize as “home and community-based” and, therefore, eligible for certain services under Medicaid insurance.
Several clear examples of places that are neitherhome nor community-based were offered: Nursing homes, psychiatric hospitals, medical hospitals, intermediate care facilities for those with intellectual disabilities.
Two experts in the civil rights of those with disabilities were on hand Monday to field questions – Andrew Imparato, executive director of the Association of University Centers on Disabilities, and Jennifer Mathis, deputy legal director for the Bazelon Center for Mental Health Law.
In addition to those institutional settings, several are presumed not to be home or community-based, including those that are within an inpatient treatment center, on the grounds of or next to a public institution, and those that effectively isolate people from those who aren’t getting Medicaid assistance.
The regulation takes effect March 14, 2015, giving the public more time to comment on the rule and giving states a year to plan how they will bring programs and facilities into compliance.
Details on how the rule will affect work settings have not been released by the U.S. Centers for Medicare and Medicaid Services, Mathis said.
“There is a desire to be flexible and accommodate choices,” Mathis said.
Those who do not wish to live or work in less restrictive settings must be offered those options, but would not be forced to move to other settings if their situations meet certain criteria, she said.
The home and workplace issues have been simmering in Delaware – and beyond – for several years.
“This is an issue that has divided the [disability] community,” Imparato said. “But there is a consensus that everyone should have the opportunity for a competitive work environment at the start of their working lives.”
Micki Edelsohn, who has built 25 group homes for those with intellectual disabilities in Delaware, is concerned about the future of such properties.
“I’m frightened,” said Edelsohn, whose son, Robert, lives and works with an intellectual disability. “I’m worried about what we don’t know.”
On the other hand, Daniese McMullin-Powell, a longtime fighter for the independence of those with physical disabilities, fears changes that could make “gated communities” and disability “communes” more likely. She does not want Medicaid money used to keep people in institutional settings.
Imparato said there is a “natural tension” between questions of safety and self-determination.
“Getting the balance right is a nuance,” he said. “In community settings, you’re not able to assure quality the same way as in a congregate setting. ... Yet outcomes are often worse in a congregate setting.”
Contact Beth Miller at (302) 324-2784 or bmiller@delawareonline.com. Follow her on Twitter @BMiller57.