The fatal fire in Wells that claimed four lives at the Riverview group home on Route 30 might have claimed many more if developmentally disabled people were still housed in large institutions as they once were.
Embedded throughout the local community there are alternative living groups from independent single apartments with minimal supports to full-care group homes. In Montgomery and Fulton counties, 83 group homes and 27 apartments house more than 500 developmentally delayed residents in varying degrees of supervision by the counties Associations of Retarded Children known as Liberty and Lexington.
At Woody Lane in the town of Mayfield, five residents share a Lexington Individual Residential Alternative home designed especially for their needs.
The Leader-Herald/Richard Nilsen
Glenn Thomas McKinney uses a communication device which translates his typing to speech at his Lexington Center supervised group home in the town of Mayfield Thursday.
Joseph Looman, formerly of St. Johnsville, is an honorary member of the St. Johnsville Fire Department, attends its Monday night meetings and carries a scanner so he knows when firefighters are called out. He remarked on a house fire in Palatine Tuesday he had heard on his scanner and later saw a picture of in Wednesday's Leader-Herald.
"Nobody was hurt," Looman said. "But the house was destroyed."
Fellow resident Glenn Thomas McKinney was sitting in his wheelchair Thursday afternoon with a mounted communication device he used to type in his comments which were then translated to speech.
"Hi, I'm Glenn Thomas McKinney," he typed in and the voice reader made audible when he pushed a button.
Lexington Residential Director Candace Opalka said the guys at the house helped design and decorate the house. The den has an obvious male perspective, she said, with a mounted deer head, hunting and fishing ornaments.
"They were involved in the layout of the house as well as the adaptive equipment," Opalka said.
In Amsterdam on Hobart Drive, three men live in a home they picked out for themselves. Diedrie Renda does residential development for Liberty and said the three friends Mark Klug, Andy Hall and Al Szala were driven all over the county looking for a place they liked in 2005. Liberty bought the house and the guys made the finish work and decoration recommendations. There is exercise equipment in the basement as well as a Wii set up for virtual bowling and an air hockey table.
Upstairs a stone fireplace has a flat screen TV mounted above it. Personal decorative touches the three friends picked out are throughout the house. Renda said the three are very active, traveling to Branson, Mo., Turning Stone Casino, Nashville, a cruise to the Bahamas and yearly to the holiday show in New York's Radio City.
Renda said the residents and their families take part in all aspects of the house including interviewing candidates for staff positions.
Down-sizing larger group homes has been a priority of OMRDD, but recent budget cuts have stopped that effort for now according to both Renda and Opalka.
"I know in the 1980s, [Liberty] had six large Intermediate Care Facilities," Renda said. "There were six to 12 people per ICF with shared bedrooms. In the mid-1990s we started converting to IRAs with individual bedrooms and a goal of no more than four people to a home."
Because of budget cuts, Liberty still has seven homes with 10 to 12 beds and Opalka said Lexington still has eight larger group homes.
In Wells, two of the dead, the resident flown to Utica and two of the surviving residents of the fire were members of the Willowbrook Class, the plaintiffs in the NYCLU's 1972 class-action case that asserted constitutional rights for people with developmental disabilities who had lived at the Willowbrook State School on Staten Island. The school was originally intended to house 2,000 students, but around the time the scandals at the institution gained attention there were almost 5,000 residents.
According to Lexington Center Executive Director Paul Nigra, things have changed considerably since Willowbrook.
"Geraldo Rivera's expose of Willowbrook forced New York State to provide adequate support for group homes," Nigra said.
"The New York State Office of Mental Retardation and Developmental Disabilities provides high-quality, person-centered supports, services and advocacy to approximately 125,000 people who have developmental disabilities and their families," Director of Public Information Nicole Weinstein said. "OMRDD works with a network of nearly 800 not-for-profit providers to help people with developmental disabilities live richer lives that include meaningful relationships, good health, personal growth and productivity and homes in their community."
Nigra said the state's mission after the abuses and over-crowding filmed by Rivera were to remove anyone from institutions like Willowbrook and place them in community settings as well as prevent others from being placed in an institution.
"Institutions are an unnatural environment," Nigra said. "With hundreds housed under one roof, it is a very abnormal living situation. And institutions tend to be placed out of the way so they are out of the public eye."
Nigra said quality of care issues were terrible in institutions and have greatly improved with the transition to community placement. He said local developmental disabilities agencies have a wide variety of residence options for the disabled from one extreme where people need total care where they may be physically helpless and paralyzed to the other extreme where people blend into the community with high capabilities and needing minimal care in supportive living apartments.
Nigra said a typical situation where people lived in a supervised setting might have seven people with two staff because the residents could take care of most of their own needs.
"In a more complicated situation, the same number of residents might need four staff," Nigra said. "The priority is for people to use community facilities as much as possible. We've come a long way since then."
Opalka said after the initial growth of community residences or group homes in the late 1970s, a second spurt came in the mid 1980s to 1990s when upstate agencies committed to take downstate residents into care because of cost savings.
"OMRDD is striving to move people out of institutional settings and into the community in comfortable homes," Weinstein said. "Our goal is to help people with developmental disabilities achieve their personal best and attain the highest level of independence through individualized service programs. We want to give people as much individual choice and control over their own lives as possible."
Richard Nilsen is a general assignment reporter and can be reached at firstname.lastname@example.org.