Natalie Bacon, left, and Meghan O'Leary, right, singing "I'm the Boss of Me," with original lyrics set to the tune Folsom Prison by Johnny Cash. In the background, Christopher Pawlyk plays the guitar.
By Gina Macris
About a dozen adults with developmental disabilities and their helpers combined hard facts and fun as self-styled “Mythbusters” Monday, March 28 to counter rumors and half-truths about the complicated federal consent decree that demands they - and thousands of others - be more fully integrated into their Rhode Island communities.
The narrated show, put on by the current leadership class of Advocates in Action, played at the Crowne Plaza in Warwick before a crowd of about 200 people, many of whom receive state services, just like some of the presenters. Family members, support staff, and friends also attended.
The spring statewide meeting, an annual event, offered the students a chance to practice emerging skills in advocating for themselves and others as they wove together videos, music, and live speaking parts. The leadership class, which concludes in June, offers a 10-month learning experience for Rhode islanders with developmental disabilities every year.
The first myth on the agenda, as explained by Amy Ethier, was that “Department of Justice came to Rhode Island and said that everyone who has a dd (developmental disability) has to work. If we don’t work, we’ll lose our services.”
That statement is not true, said Andrew Whalen, who works part-time at Advocates in Action.
According to the consent decree, “those people who want to work will get the support they need to work” in jobs paying at least minimum wage, he said. “People can choose not to work, but it needs to be an informed decision.”
To make the point that life experience is at the heart of an informed decision, Deb Kney, the administrative director of Advocates in Action, presented a take-off on the long-running Life cereal television commercial, in which three-year-old “Mikey” finally tries the food that is “supposed to be good for you” after his two friends refuse to take a bite.
In the video, Keith Wilcox takes on the role of “Mikey,” who is flanked by friends egging him on to eat the cereal. The final message, delivered poster-style on a mock cereal box: ” Real Life Tastes Great! Sample Some Today!”
Though it was emphasized during the presentation, the state does not now have enough resources in place to readily help everyone with a developmental disability who wants to get a job, or to immediately offer real life experiences to everyone who needs to make an informed decision about applying from a waiver from work.
The way the state will pay for implementing the consent decree is one of the key issues that has been unfolding since January in hearings in U.S. District Court in Providence.
Another thing the court wants to see is an assurance that services will fit an individual’s needs.
It’s not one-size-fits-all, the leadership class impressed upon its audience.
Those receiving services, according to the consent decree, are entitled to an individualized service plan that places each person’s needs, strengths and interests at the heart of planning and delivering services.
Jim Petrone, who uses a motorized wheelchair and a communication device, demonstrated that point in a pre-recorded video which shows him listening for a minute while several people talk about his likes rather than asking him directly. Then Petrone conspicuously turns up the volume on his communication board and a deep voice booms: “Attention! Excuse me. This is my meeting and I need to talk now.”
At the other extreme, a video clip dispelled the myth that the mandate for individualized supports includes luxuries. Christopher Pawlyk donned a lei, oversized sunglasses and a flower-topped hat trimmed with halo of fake fur to deliver this line: “Well, this person wants to take an individual vacation to Hawaii two to three times a year.”
Medicaid does not pay for “stuff,” but for the supports and services needed for people to have access to experiences in their communities, the leadership class emphasized.
The group also busted the myth that Rhode Island is closing all its group homes AND moving everyone into shared living arrangements with individual families.
Class member Amanda Campbell followed up with the facts. “It is true that the state wants you to become more educated and informed on shared living, but it’s your choice. You have the right to live where you want to live,” she said.
Advocates In Action invited an expert on shared living, Joanne Malise, to speak on that housing option. She described it as a “mutual choice” involving a family and the individual looking for a place to live.
“You get to know each other and both people decide to live together,” she said. Malise is director of Living Innovations, an agency that specializes in supporting shared living arrangements.
For those seeking a different option, financial realities make house-hunting a bit more complicated. Questions from the audience indicated people with developmental disabilities are having a difficult time securing subsidized apartments for which they are eligible.
People living in group homes who may not be candidates for shared living arrangements may have to move anyway if their home is closed during the state’s shift to shared living.
Charles Williams, director of Social Services for the Division of Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said the group homes must give residents 30-days’ notice before a house closes. The agency is obligated to continue to provide support until alternate housing is found, he said.
While people with developmental disabilities have the right to choose the agency which serves them, the state does not reimburse them for all their costs. That issue is also embedded in the federal court case. Financial constraints have prompted the state’s private providers to refuse new clients, particularly if the individuals have extensive, costly needs.