Jeanne Connery, mother of a young adult on autism spectrum, talks about a job trial that did not go well for her daughter during Wednesday's public forum at the Buttonwoods Community Center in Warwick.
By Gina Macris
“You threw the baby out with the bathwater when you eliminated sheltered workshops,” Brian Newton, the father of a woman with developmental disabilities, told Rhode Island officials at a public forum in Warwick Aug. 17.
In reality, most, but not all, sheltered workshops in Rhode Island closed abruptly in the wake of U.S. Department of Justice findings in 2014 that segregated employment – at sub-minimum wage – violated the Americans With Disabilities Act (ADA).
“What happened to my daughter’s right to work in a sheltered workshop?” he asked. She and her friends “were happy making 5, 7, 12 dollars a week,” Newton said.
“You have to admit there’s a certain population that will never work” at a regular job, he said.
Newton looked straight at Jane Gallivan, Rhode Island’s interim Director of Developmental Disabilities, who happens to have three decades’ professional experience in Maine and Delaware and a national reputation among her peers as an innovator.
Gallivan smiled as she looked back at Newton and slowly shook her head from side to side, kindly but firmly.
“Not to go there,” said Gallivan, who has extensive experience promoting job opportunities for individuals facing intellectual challenges.
Newton persisted, saying there’s a “certain percentage” that won’t be “bagging groceries or doing piece work.”
“I hope not,” Gallivan replied. “I hope it’s customized to what they can do.”
Newton: “They have to have somebody with them.”
Gallivan: “People have job coaches now. You can have a job coach for a very long time.”
Jeanne Connery, the mother of a 20-year-old woman on the autism spectrum, said her daughter has a high aptitude for math and science but does not connect with people.
She was placed in a job trial in a retail store, where she tagged and stocked shoes and boots, an experience which was not a good match for her, Connery said.
What her daughter needed was the Job Club at the Groden Center, a group that talked about the social and behavioral pointers that do not come intuitively to people on the autism spectrum, Connery said.
That job club did not have the capacity to take on another group member, according to Joseph F. Murphy, administrator in the state Office of Rehabilitation Services.
Mary Madden, Rhode Island’s Consent Decree Coordinator, said, “The bottom line is that this is a free country. Nobody is going to make your son or daughter go to work at a job that isn’t appropriate to them. I just want to say that there are a lot of misconceptions out there.”
There are now “400 people working in the community,” Madden said.
Most of them “are not bagging groceries or working at Home Depot,” Madden said. “We haven’t done a good job getting stories out” about individuals with unique skills matched to the needs of a company.
In fact, one person with a unique job was in the audience. Mark Susa of Warwick, with the help of his father, John Susa, and paid support staff, trains peers with disabilities – readers and non-readers alike - to use public transportation independently.
Mark Susa also serves on the Board of Directors of the Rhode Island Public Transit Authority.
Madden, meanwhile, said that regardless of the 2014 consent decree which mandated integration of individuals with intellectual and developmental disabilities,“people should be doing meaningful things every day.
“Not everyone is in the community all of the time. People only tend to work 10, 15, or 20 hours a week. They should be able the rest of the time to do something meaningful,” she said.
Gallivan, Madden and others, including Jennifer Wood, Deputy Secretary of Health and Human Services, gave an audience of about 75 people progress reports on budgetary and programmatic fronts since the last community forum in late April.
Among other things, front line support staff will see wage increases in their paychecks by October 1, along with a lump sum retroactive to July 1.
The General Assembly earmarked $5 million for wage increases to some 4,000 direct support staff in the current budget. The increase will average about 30 cents an hour, or about $600 a year, before taxes, based on a 40-hour work week.
Another $6.8 million in the budget will be set aside for performance bonuses as private service providers meet certain benchmarks in moving clients into jobs in the community and helping keep those jobs.
During the last two months, there has been nearly a complete turnover in the leadership of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, with two key positions yet to be filled.
The state is looking for a new departmental director to succeed Maria Montanaro, who left at the end of June, as well as a permanent Director of Developmental Disabilities to replace Charles Williams, who retired at the end of July.
In the meantime, the deputy BHDDH director, Rebecca Boss, serves as acting director. She attended the community forum.
Gallivan said she can remain as Interim Director of Developmental Disabilities only until the end of September.
Recently retired from the top developmental disabilities post in Delaware, Gallivan had promised her mother, now 101 years old, that she could spend winters with her in her home in Florida. That was before Rhode Island came calling. Gallivan's mother is spending the summer on Cape Cod.
“How many more winters are we going to have together?” Gallivan said. “That’s why I’m not going to continue much longer” than September, she said.
Wood, the Deputy Secretary of Health and Human Services, quipped that Gallivan’s mother has, in effect, set the timeline for filling the developmental disabilities director’s job.
Gallivan said the challenges Rhode Island faces are “not very different than in many of the other states.”
“We need to have a strong vision of what it is we want to have in Rhode Island,” Gallivan said. “That’s my task when I’m here.”
She indicated there are conflicting internal and external pressures on state government with regard to developmental disabilites.
“Internally, there’s a lot of pressure to deal with rising costs. Externally, the federal Centers for Medicaid and Medicare Services, “who give us 50 percent of the money, wants us to look at services differently.”
By 2019, all states must provide Medicaid and Medicare services in all categories in the least restrictive setting that is appropriate, according to the latest rules of the CMS. The rule change is in keeping with the Olmstead decision of the U.S. Supreme Court, which clarified a mandate for integrated community-based services in Title II of the Americans With Disabilities Act.
The Olmstead decision also forms the legal basis for the 2014 consent decree in Rhode Island, which affects only daytime supports for individuals with intellectual or developmental disabilities.
Gallivan was asked about the Supports Intensity Scale, (SIS) a controversial needs assessment questionnaire that is used to develop individual funding allocations.
She said the Division of Disabilities “has begun to take a close look” at variability in the scores of the SIS at it has been administered in Rhode Island.
For an individual with developmental disabilities, the results of periodic reassessments are supposed to be relatively stable, because the need for support generally does not change dramatically over a lifetime.
However, analyses of SIS scores performed by a healthcare consulting company under contract to the state show that 46 percent of individuals who were re-assessed showed changed levels of need – and funding.
The review of the use of the SIS is “high on the agenda,” Gallivan said.
Sue Joinson asked whether there will be an “opening of restrictions on residential placements,” which appear to be available only to families who are in crisis.
“Why is it that I can’t get a concrete plan” for the transition of the younger of her two daughters with developmental disabilities? she asked. She is 60 and her husband is 70, Joinson said.
Gallivan said residential services have been identified “as a need.”
“We need to evaluate all residential options” including shared living, “and move slowly,” she said.
Wood, meanwhile, said that the legal framework of the “least restrictive environment” in the ADA means that state policy does not assume that a group home is the most appropriate residential setting for an individual with developmental disabilities.
The state must offer a “continuum” of options suited to individual needs, she said.