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Marc Lucas lost everything in his life when he became a quadriplegic after a car crash in 2004. For eight years, Lucas, 27, lived at the Berkshire Nursing and Rehab Center in Forest Park hoping to get out.
November 1st, he says, was his independence day, as that is when Lucas moved into one of two newly created wheelchair-accessible apartments of the Oak Park Residence Corporation's multi-unit building at 901 Pleasant Street.
As a participant in the Money Follows the Person Demonstration Program, which is administered by the Illinois Department of Healthcare and Family Services, and thanks to a recent collaboration with the Oak Park Housing Authority and the Progress Center for Independent Living in Forest Park, Lucas is a rent-paying tenant.
"[The Progress Center] asked me if I wanted to come back out into the community, and said we can offer you this. I said, 'Yeah, I'm ready,'" recalls Lucas. "It was time to get out of the nursing home. It was not the place for me."
Medicaid has helped fund his transition from an institutional facility to the vintage two-bedroom apartment in Oak Park. He also has a nonelderly disabled voucher via the Oak Park Housing Authority. Three years ago, in a nationwide HUD initiative, the federal agency was awarded a special allocation of 15 housing vouchers for use in helping transition individuals out of nursing homes and back into the community, says Ed Solan, executive director of Oak Park Residence Corporation.
"We knew we had the units in our Pleasant Street building that could appropriately be retrofitted and rehabbed into rentals for persons with disabilities who use a wheelchair, and Mr. Lucas is a beneficiary of one of these HUD vouchers," says Solan.
The housing initiative, adds Dan Burke, who is Gov. Pat Quinn's statewide housing coordinator for long-term care reform, is specifically targeted to a population of individuals who are below age 61, and who are disabled and living in a nursing institution. To qualify for the program, the person must be willing and capable of moving out and into a community-based setting.
The cost of an individual with a disability to reside in an institutional setting can end up in the range of $50,000 to $75,000 per year, whereas the cost of funding an individual in a community-based setting is about $25,000 to $30,000, according to Horacio Esparza, executive director of the Progress Center for Independent Living.
As part of that cost a governmental subsidy covers approximately $7,500. To this sum the tenant will pitch in an additional $2,500 from his/her social security disability check, or just over $200 a month in rent.
"These individuals do have skin in the game, in terms of paying something out of their very small check for their housing," Burke says.
The accessibility makeover
The renovation work began on the two rental units more than a year ago when the resident corporation tapped Oak Park architect Frank Heitzman to design the new space with a budget of about $70,000, says Solan.
"A roll-in shower is a difficult thing to do because you have to fit an accessible bathroom into a very small apartment unit," says Heitzman.
"Bathrooms that are accessible with a roll-in shower tend to take up a lot of space, because you have to make the whole bathroom, in a sense, a shower."
Likewise in the kitchen, Heitzman had to be aware of the type of appliances to install as well as the height of the cabinets and countertop. Everything needed to be wheelchair-friendly.
"We also provided the tenant with an electronic [entry pad], where instead of using a key, he can swipe this FOB pad against the receiver and open up an iron gate, which is locked and hard to open, and the doors," says Heitzman. "In case of emergencies, we also put in an uninterruptable power supply just for that opener, which was kind of unique, and something that isn't done that often."
On deck for the Oak Park Resident Corporation, adds Solan, is locating 13 additional local property owners who are able and willing to join in on this type of accessible housing.
"Our goal and role in this project is to provide assistance and support for the transition process," Burke says, "because under the Money Follows the Person Demonstration Program there are a series of protocols and follow-ups with the service agency (Progress Center) to ensure that the person is receiving appropriate care in the community, so we do have an ongoing role. We are interested in Oak Park's success, under this program, because it mirrors what the state of Illinois is undertaking at a more global level to achieve as many transitions from long-term care facilities to the community as possible."
The state of this state
Mandating this effort, adds Burke, are two landmark court decisions. First, in 1999, in rejecting the state of Georgia's appeal to enforce institutionalization of individuals with disabilities, the Supreme Court affirmed the right of individuals with disabilities to live in their community.
"That was the opening of the door in this area, the 1999 U.S Supreme Court decision, and it spurred a number of lawsuits in the State of Illinois in the following decade," Solan explains. "The most important of which is what is called the Colbert Decision, where a group of individuals with disabilities sued then Governor (Rod) Blagojevich, in the name of the State of Illinois and won a consent decree which said the state had to discontinue the practice of placing people in nursing homes if they didn't want to be there, and if they didn't have to be there."
Recently, adds Burke, under the principles of the decision made in Georgia, the court approved an implementation plan in the case of Colbert v. Quinn that requires the state of Illinois to offer community housing opportunities, with support services, to residents receiving Medicaid in 185 nursing homes in Cook County.
They have agreed to achieve 1,100 of these transitions over the next 30 months, according to Burke.
Meanwhile, on Pleasant Street, Marc Lucas has a new neighbor, and Solan is hoping that soon 13 more mobility impaired individuals will be moving out of a local nursing home and into one of his collaboration's newly identified wheelchair accessible rental units in Oak Park.
"Mr. Lucas, he needs more assistance than the new consumer we are moving now, who is more independent," says Esparza, who is blind and oversees the Progress Center's offices in Forest Park and Blue Island. "Nursing homes for a person with a disability are the worst option.
"We firmly believe that people with disabilities have the right to live in the community, make their own choices like anyone else, and, 'we' have the right to succeed and to fail.
"We have a list of people we are working with; Marc is not the only one. We have people we have already moved out, and others behind him on the list."