'Critical need' for group homes cited

As New York prepares to shutter three of its five remaining state institutions for the developmentally disabled — down from 20 — most are willing to say good riddance.

But those closures during the past 30 years have created an unintended consequence, say advocates for those with severe developmental disabilities: A lack of group homes for the most in need.

"These are people who are in critical need of a place to go," said Bernard A. Krooks, founding partner of Littman Krooks LLP and an expert in special needs planning law in Westchester County. "We've known for at least the last decade that there has been this vacuum, but what do you do about it?"

In 1987, the state Office of People with Developmental Disabilities began to reduce its "institutional capacity" and instead began a shift to providing services to individuals in community-based settings.

The closing of Willowbrook State School in Staten Island was the first, and since then, 15 institutions have closed. At one time, nearly 27,000 individuals lived in 20 institutions; today there are fewer than 500 in the five remaining locations.

"Providing opportunities for supports and services in the most integrated setting possible is a core component of OPWDD's mission, vision and values and is required by the U.S. Supreme Court Olmstead decision," reads a statement from OPWDD. "OPWDD has, for many years, been actively engaged in downsizing and closing institutional capacity in order to assist as many as possible to live productive lives that are fully integrated in their communities."

The Olmstead decision held that individuals with mental disabilities have the right to live in the community, in the least restrictive setting possible.

The shift has been to more than 6,500 residential programs statewide overseen by OPWDD through both state-operated services and through a network of 700 nonprofit agency providers.

About 198,000 individuals with intellectual developmental disabilities live at home with family caregivers in the state, said Pat Muir, chair of Family Advocates United. Twenty-five percent of those caregivers are 60 or older, and only 27 percent of those living at home receive any in-home support services.

The state has projected the development of 757 certified residential placements over the next three years, which is only about 6 percent of the need identified in 2013, according to the "State Fiscal Year 2015 Financial Plan Mid Year Update-November."

The state has said it would consider more development, but advocates say that is still not enough.

Steve Anderson, CEO of The Summit Center in Buffalo, said the state is lagging in development of housing for those with the most severe developmental disabilities.

"In our western New York office, I think they reported at the last meeting that they placed 54 individuals this year and we were surprised there was that many, considering there was no new bed development," Anderson said. "I would bet if we were to sort through that list, they are all individuals who are in crisis."

The agency said it is reviewing "the residential needs of people with developmental disabilities currently registered as having requested residential supports to ensure that the information is current and that residential and housing supports will be available to individuals when they need them."

It's unknown how many of those who are waiting are diagnosed with autism, Down syndrome or another intellectual developmental disability because the OPWDD does not track it that way.

"We serve each person's needs through a person-centered planning process helping the individual and their family members to plan services and supports in the most integrated environment possible based on the individual's abilities, needs and wants."

The three developmental centers to close during the next two years include the Brooklyn Developmental Center, Bernard Fineson in Queens and Broome Developmental Center.

OPWDD will retain institutional capacity at two sites in the state, Sunmount in Tupper Lake and Valley Ridge in Norwich.

JHAND@DemocratandChronicle.com

Autism

Autism is a brain disorder that affects a person's ability to communicate, to reason, and to interact with others. It is a spectrum disorder that affects individuals differently and to varying degrees of severity, and it is often found in combination with other disabilities.

The terms "autism" and "autism spectrum disorder" are often used interchangeably. Autism spectrum disorders refers to the umbrella pervasive developmental disorders. Autism is one of five disorders under PDD.

The U.S. Centers for Disease Control and Prevention said 1 in 68 American children is on on the autism spectrum, a 10-fold increase in prevalence over the last 40 years. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States.

Autism spectrum disorder is estimated to affect more than 2 million people in the U.S. and statistics suggest that prevalence rates have increased 10 percent to 17 percent annually in recent years.

A growing number of students transition out of special education programs each year: In New York, that will be 3,000 to 5,000 this year alone.

"Many of those students will eventually need residential placement or in-home services," said Pat Muir, chair of the Family Advocates United, a collaborative group of advocacy organizations that includes AutismUp and Managing Autism Together Today. "I think it's always a response to crisis: We watch the numbers of autism skyrocket, so we know more problems are coming. But we wait until the wave hits and then we tell people to do the best that they can."

For help

For information on services and contacts related to individuals with developmental disabilities, visit the Office for People With Developmental Disabilities website: opwdd.ny.gov.

For help and advocacy for people with autism, visit Family Advocates United's Facebook page: facebook.com/FamilyAdvocatesUnited.

Meet Jon Hand

Jon Hand is the Democrat and Chronicle's Problem Solver Watchdog reporter whose beat focuses on finding solutions to people's problems. The problems are of all types, large and small, and Jon either tries to solve the problems, or draw attention to them so that a solution can be found in another way.

He is a married father of four children who lives in Penfield. Jon has spent most of his 22 years in journalism covering crime and courts. Outside of work, he is a lacrosse and basketball coach, a part-time bartender and a small business owner. He also plays the banjo in a bluegrass band and enjoys exercising, sitting by fires and playing lacrosse in an "old man's league."