Closing doors or offering opportunities: Advocates for people with disabilities disgree about the meaning of new rules

Aug. 21--JANESVILLE -- Sheltered workshops across the state are warning families that changes in state Department of Health Services rules could shut them down.

The head of the Department of Health services said that's not true and warned people against what some advocates have called a campaign of misinformation.

At stake are the lives of people with disabilities--how and where they live, where they work and who makes the choices about their lives.

This year, Wisconsin is applying for federal Medicaid waivers. The waivers allow the state to provide to people with disabilities non-medical services such as day- and job programming in "home and community-based settings" rather than in institutions.

The federal Centers for Medicaid and Medicare are changing their definition of "home and community-based" in an effort to make sure people with disabilities are being served in the least restrictive, least segregated settings.

Sheltered workshops, which now are called "prevocational" facilities, provide work and day programming in what would be considered segregated settings.

Nonprofits that run prevocational programs, the parents of the adults served there, and often the clients themselves, say the system works for them.

WORRIED ABOUT SERVICES

Jo Anne Tully's daughter, Kathleen, is 26 years old and has the cognitive level of about a 15-month-old. Kathleen, who spends most of her time in a wheelchair, goes to VIP Services in Elkhorn for day programming.

"It's a wonderful, wonderful program," said Tully. "Kathleen loves it. She gets so excited about the bus coming down the street."

Kathleen has an Individualized Education Program, commonly referred to as an IEP, that outlines her goals.

Kathleen would not be a candidate for community employment.

"There's no way to pretend she would be able to get a job," Tully said.

Tully serves on the VIP Services board, and works as a speech and language pathologist in the Delavan-Darien School District.

As such, she's knowledgeable about services provided for people with disabilities and is not someone who would panic before knowing all the facts.

Her impression of the proposed changes: No person with a disability could be served in a segregated setting.

That's the message from the new guidelines that worries VIP Executive Director Cindy Simonsen.

On July 30, Simonsen was included in a "stakeholders" teleconference with the state Department of Health Services. An hour before it was slated to start, she received by e-mail a document titled "Overview of Proposed Changes to Family Care Waivers."

One page of the document indicates employment and day services "may be furnished in a variety of locations in the community."

Gary Bersell, executive director of KANDU Industries, Janesville, said his organization is worried about what will happen to clients who use in-house employment services. KANDU provides a range of employment services and day programs to people with disabilities. The changes could cause him to shut the doors.

When told that prevocational programs would be allowed to stay open, Bersell said, "That's not the message we've been getting from DHS.

OFFICIAL RESPONSE

Health Services Secretary Kitty Rhoades said she's been trying to combat misinformation about the proposed waivers.

Rhoades said that the waiver proposal does not in any way prohibit people from using prevocational programs such as KANDU Industries and VIP Services.

"There is nothing in our waiver program application that says that they are not allowed," Rhoades said. "We want to make sure that people with disabilities have the same choices as everybody else."

Rhoades said the department is trying to balance what works for Wisconsin with the federal requirements from the Centers for Medicaid and Medicare Services that stress integrated employment and day services.

Those requirements arose out of a 1999 U.S. Supreme Court decision that people with disabilities be served in the least restrictive settings possible.

Rhoades said her department wants people with disabilities and their families to continue to have range of choices.

So why the confusion among providers, people with disabilities and their advocates?

"I believe it's because the waiver does not mentioned prevocational settings specifically," Rhoades said.

Just because it isn't there doesn't mean it won't be allowed, she said.

MORE CLARIFICATION

Beth Sweeden, executive director of the Board for Persons with Developmental Disabilities, said her organization "has not taken a position to close facilities" but does support the expansion of community choices.

"I think this is critical for folks to understand," Sweeden wrote in an email. "The plan ... ensures that an individual's levels of services should not change or be reduced."

Disability Rights Wisconsin and the Board for Persons with Developmental Disabilities put together a "frequently asked questions" list that is posted online at wi-bpdd.org/docs/2014/FAQ-HCBS.pdf.

But when addressing the issue of shutting down prevocational facilities, the document says providers have five years to change to a more community-based model.

"Wisconsin prevocational facilities have had 15 years to change their business model since the Olmstead (Supreme Court) decision requiring more integration for people with disabilities. During that time, the state of Wisconsin invested $75 million over 10 years to build integrated employment capacity, including specific efforts to help providers change their business models," the document reads.

Dane County has focused on the community-based model for more than two decades. About 80 percent of people with disabilities work in the community. That's compared to 5 percent to 8 percent in other counties, according to the document.

Despite the high percentage of people working in the community, Madison still has several prevocational, segregated workshops.

The document also notes segregated employment is referred to as "prevocational," fewer than 5 percent of people who enter such employment every get a job in the community.

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