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Fri July 29, 2011
RI's disability community speaks out
By MEGAN HALL
Providence, RI – The state spent this week seeking feedback from Rhode Island's disability community. Public meetings across the state were open forums for complaints, praise, and ideas about how to make the Ocean State more accessible. But WRNI's health care reporter Megan Hall reports most disabled residents can't get past their fear of losing basic services.
Antonio Guimaraes has been blind all of his life, but that doesn't slow him down. He had no problem getting himself to an internship at WRNI. That's how we met him. On this day, he walks fearlessly down the streets of Providence, regardless of any objects in his way.
Guimaraes says he runs into something about every two or three months. Like the time he was walking on the east side of Providence.
"So what happened is my cane missed the sign, went right underneath it and I hit the sign with my nose," he says. "The sign was for a doctor's office. Maybe I should have gone to the doctor and had him fix my nose."
Guimaraes says if he was afraid of crashing into things, he'd never get out of the house. And while he'd love it if the state kept a closer eye on protruding signs that knock people like him in the nose, he says he has more important things to worry about- like public transportation.
"The current system as it's currently designed doesn't serve itself to getting me from East Providence to Warwick for a doctor's appointment in time for that appointment," he says. "I have to plan my trip like I'm planning a wedding."
Guimaraes often waits nearly an hour for the bus that takes him home. Bus drivers don't always call out the stops, so he gets stranded in strange places. It's even hard to find bus stops because he can't see them. Guimaraes used to have a job in South Attleboro, but getting there was too difficult.
"The shifts were pretty early and pretty late. I had to find me drivers to take me there and back, at least four times a week," he says. "Buses stop running after 10 and my shifts let out at 10 and schedule wise it just didn't work."
Plans at the Rhode Island Public Transit Authority to close some bus routes, schedule some to come less often, and cancel all holiday service have Guimaraes even more worried about his ability to get around. And he's not alone.
Darlene Thomson was one of the angry residents at a hearing in Newport on RIPTA's proposed service cuts. She's also blind and depends on what's called the Americans with Disabilities Act Transit Program to get to school.
The service picks disabled residents up at their homes, but only if they live three quarters of a mile away from a bus line. When nearby bus routes get canceled, so does access to the program.
"I need your service and I use your service every single day," she says. "If you cut services for ADA, you are hurting me and keeping me pinned down and dependent on the system. You're not helping me. You are making me another victim."
Representatives from RIPTA say they're doing all they can to accommodate people with disabilities, but the transportation system faces a $4.6 million dollar budget deficit and has to cut somewhere.
The RIPTA service cuts were also a popular topic at the state's disability forum in Warwick, where more than 100 people crammed into a room at the Public library. Kathy Kuiper says last week, her disabled son got stuck at Kennedy Plaza on one of the hottest days of the year.
"There were so many people wanting to get on that bus going south that he had to let 2 buses go by," she says. "About an hour and a half he was waiting in the hot sun. And when he finally was able to get on a bus, he was beginning to see spots in his eyes and was feeling a little funny."
And then there was testimony laced with fear and confusion. Beth Dennis slouched in front of the microphone as she talked about her son Robert, who has muscular dystrophy. The state used to pay her $10 an hour to take care of her son, but not anymore.
"I have one nurse that comes four hours a week one week and six hours another week," she says. "That's not enough. I have to get a job because I'm gonna lose my house."
Tara Townsend's three year old son Andrew uses a ventilator to breath. she's noticed a change in what Medicaid will pay for.
"He's being denied nutritional medications, for what reason?" she says." You know, if the doctor says he needs it, doesn't he need it? I don't understand."
Of the 26 people who testified, no one spoke about accessibility issues like curb cuts or Braille signs. Lorna Ricci, the moderator of the forum and the executive director of the Ocean State Center for Independent Living says that's because Rhode Islanders with disabilities have more urgent things to worry about.
"If you remember Maslow's hierarchy, we're at the basic needs right now," she says. "We're not thinking high level, oh, let's make the world a perfect place with access and curb cuts and ramps. Yes, we need that, absolutely. But what's happening now is we're back to basic shelter, being able to take care of our basic needs."
This year, the state budget for Rhode Islanders with developmental disabilities was cut by more than 20 million dollars. It's still unclear how that cut will affect service providers and their clients. Changes in the way Rhode Island organizes its services for the developmentally disabled are also adding to the community's sense of fear and confusion.
Tedio Ciavarini,an elderly parent of a brain damaged 49 year old daughter,says he feels incredibly ineffective.
"In the early days we seemed to be more effective in advocating for the people we represent," he says. "There is something wrong with the way we may be advocating. We go to the state house year after year after year, we talk to our legislators and the cuts remain, the cuts are deep and the cuts are impending, they're coming more and more."
As for people like Antonio Guimaraes, with physical limitations, not developmental ones, the impending cuts in public transportation might mean the difference between staying in Rhode Island and leaving. Guimaraes says he might move to Boston, where it's easier to get around.
While Rhode Islanders with less freedom are focusing on survival and looking forward to a day when they can worry about ramps and curb cuts.
View the complete schedule for the Rhode Island disability forums here
Do you have insight or expertise on this topic? Please email us, we'd like to hear from you. firstname.lastname@example.org.