By Gina Macris
Officials of Rhode Island’s developmental disability system hit blowback Wednesday from family members who oppose a 2014 federal consent decree that requires the state to move from sheltered workshops and segregated day programs to community-based work and leisure activities.
Debra Feller, whose son has developmental disabilities, challenged the basis of the decree, saying it is contrary to the very law on which it is based, the Americans With Disabilities Act (ADA), by limiting, rather than expanding, opportunities for employment.
The decree, “violates the ADA“ for people like her son, who cannothandle outside employment, Feller said. She also contended that“sheltered workshops are being allowed to deteriorate at the expense of the consent decree.”
Michael Carroll, who works at a day facility in Middletown run by the James L. Maher Center of Newport, mocked a consent decree mandate that the state help adults with disabilities find and keep jobs in the community.
“The emperor has no clothes,” Carroll declared. “These jobs don’t exist. What happens then?”
The “same individuals who were working before at subminimum wage are now doing nothing,” Carroll said.
Their comments came during a two-hour “town hall” meeting at the Buttonwoods Community Center on West Shore Road in Warwick, where about 100 consumers, their families and state officials discussed both the philosophical as well as the practical underpinnings of the consent decree.
The decree was signed after the U.S. Department of Justice found Rhode Island violated Title II of the ADA because it unnecessarily segregated adults with developmental disabilities in day programs or workshops that paid sub-minimum wage.
Title II of the ADA, underscored by the 1999 Olmstead decision of the U.S. Supreme Court, says that services must be provided to individuals with developmental or intellectual disabilities in the least restrictive setting that is appropriate.
Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was to lead the session in Warwick, but she was ill Wednesday. Other BHDDH officials, including Andrew McQuaide, chief transformation officer, and Charles Williams, director of the Division of Developmental Disabilities, responded to the comments.
Thee sister of a man who is significantly impaired said the employment mandate of the consent decree was being carried out to an illogical extreme, at least in her brother’s case.
Lidia Goodinson said her brother is 56 years old and “doesn’t know the concept of work. ““Nobody would expect a two year-old to go out and get a job,” she said.
And yet her brother’s social worker told her that “to get funding, he has to look for work.”
Williams, of BHDDH, said, “Your response is to say that ‘I don’t believe he can work.’ “
Goodinson, however, said she did make herself clear. Nevertheless, the social worker said, “This is what the state requires,” according to Goodinson.
Williams asked Goodinson to give him the name of the social worker after the meeting.
When Debra Feller asked whether “a sheltered workshop is a reasonable or appropriate environment for anybody,” the BHDDH transformation chief, McQuaide, said: “The consent decree says it is not.”
McQuaide said there are many individuals with developmental disabilities who can and want to work in the community but can’t access the supports they need. The consent decree is designed to give them that choice.
“Nobody’s arguing about that,” Feller replied, but individuals like her son “can’t be left out of the conversation, either.”
The government is “stepping on their rights by saying they can’t be in a sheltered workshop,” Feller said. The audience applauded her remarks.
McQuaide said the Department of Justice will say the consent decree “does not close sheltered workshops, but effectively it does.”
He said the state still has sheltered workshops, but at some time in the future, the state will no longer fund those.
He agreed with Feller that a sheltered workshop can provide space for a meaningful activity and foster long-lasting relationships, but he said those same meaningful relationships and activities can occur in the community.
As to Michael Carroll’s challenge that community-based jobs don’t exist, McQuaide said the employment targets in the consent decree are not “so astronomical” as to be difficult to achieve.
McQuaide scotched a rumor that the consent decree requires the state to close all segregated day facilities.
One center in Bristol is closing because its neighbor, Roger Williams University, wants to buy the property and the state has agreed to sell it, McQuaide said. He said some of the people who attend that program will go to the Middletown center operated by the Maher Center and others will have community-based day programs.
McQuaide, after hearing the comments during the town meeting, said that “we have to do a much better job communicating about the consent decree.” He offered to give Feller contact information for DOJ lawyers.
At the very least, the families’ comments underlined a gap between the promise of the consent decree and its day-to-day implementation in a service system hindered by poverty-level wages for professional staff workers and restrictive rules that prohibit flexibility and innovation.
Between 2008 and 2011, funding for developmental disability services was cut 20 percent, according to statistics presented in February to the state Senate Committee on Health and Human Services by the director of the Sherlock Center on Disabilities at Rhode Island College.
A. Anthony Antosh said a smaller percentage of individuals with developmental disabilities had community-based jobs in 2015, a year after the consent decree was signed, than had been employed earlier at minimum wage or higher.
“What has increased is the number of people who are essentially doing nothing” during the day, he told the committee.
After the consent decree was signed in 2014, sheltered workshops began closing abruptly under pressure from a previous BHDDH administration. Private agencies strapped for cash had no alternative programs already in place to support their clients in the transition to work and leisure activities in their communities.
At the Buttonwoods Community Center on Wednesday, BHDDH's Williams touched a nerve when he told parents they needed to be frank about their loved ones’ support needs during a periodic assessment called the Supports Intensity Scale (SIS).
Debra Feller said she was direct but “the SIS intake person refused to accept my answer,” a comment which again drew applause from the audience.
“I asked, ‘How long before I get this back?’ “ she said. The BHDDH worker told her she didn’t know, “because I didn’t answer the questions the way she wanted,” Feller said.
The Department of Justice found that that the SIS was being used improperly as a funding mechanism. The multiple choice questionnaire was developed by the American Association of Intellectual and Developmental Disabilities as a guide in defining the supports necessary to help a particular person achieve his or her individualized goals.
The consent decree requires an outside health consulting firm to do an annual analysis of the way BHDDH uses the SIS and to submit the report to the independent court monitor in the case.
Devlin Allen, who hosts a man with developmental disabilities as a shared living provider, said that after a recent SIS, his client’s funding was cut by $8,000 a year, a 24 percent cut in reimbursement, which makes it “very difficult to maintain that person in my home.”
“They’re cutting the funding because we’re doing a good job with an individual,” he said. The SIS should take into account that if the supports are removed, a client’s level of need will increase, he said.
Williams told Allen to file an appeal. Almost all, if not all, appeals are granted, Williams said.
In closing, McQuaide said Montanaro, the department director, would reschedule her appearance for sometime in May.