Group Homes Shouldn’t Supplant State Facilities for Those in Need

By SANDER and REGINA FOX | Nov 13, 2019

As parents of a disabled adult male who has been a very happy resident at the New Lisbon Developmental Center since 1985, we found the Oct. 23 article regarding Community Options a most interesting read. Community Options is an organization that manages 130 group homes for those with intellectual and developmental disabilities in New Jersey, 21 in Ocean County.

Long story short, your article deals with a success story involving a particular individual whose disabilities place him within the parameters of a very thin slice of a rather large and complex pie. The term “intellectually and developmentally disabled” encompasses a range of individuals. Those, like Ted Cook, who was interviewed for the story, are capable of living alone and functioning satisfactorily in society, but others are severely disabled, wheelchair bound, unable to speak, hear, see, feed or care for themselves and require constant care just to survive.

State facilities like New Lisbon have proven over time that they have the resources, the trained personnel, and the state regulated and supervised mandates (unlike community-based facilities) ensuring the level of care necessary to meet the requirements and special needs of every resident. For those who are capable of semi-independent life, New Lisbon offers a snack bar, a greenhouse, a medical facility, a gymnasium, a community center and a work-training facility on campus, all within walking distance. A bus is provided for those who are in need of such services. What other community-based residence can offer all of those services on a very safe, secure and spacious campus?

Having literally gone through living hell for years prior to finally receiving approval for our son’s placement at New Lisbon – a facility he’s subsequently learned to accept and find comfortable and call home – we were shocked to learn of looming changes via a letter we received from then-Gov. Christine Todd Whitman in 1994. She wrote:

“One of the goals of my administration is to eliminate congregate-care institutions for people with developmental disabilities.”

And ever since, to our dismay as well as the disappointment of many parents, guardians, relatives and residents, we have witnessed a consistent yet silent effort whose primary function appears to be moving residents into community placements while simultaneously stopping any new admittances. There is no doubt that these population-diminishing efforts ultimately resulted in the closing of two of New Jersey’s facilities. The New Lisbon facility, which once (in 1969) housed in excess of 1,200 residents, is now home to fewer than 300. The fact that some disabled individuals must wait eight years for placement (according to the article), when there are vacant facilities at New Lisbon that can accommodate so many in need, is beyond comprehension.

Our concern is that, given enough time, the ever-shrinking population due to the persistent trickle of residents out into community settings, as well as deaths due to natural causes (age) and terminal illnesses, will reach a point when the remaining residents will no longer justify the expenses of salaries, facilities, repairs, maintenance, etc. necessary for the facility to continue operation. Common sense will then dictate the state will have no other choice but to close the facility. Our son, and the remaining sons, daughters and relatives, who have known no other home, surroundings, friends and caretakers for decades, will be uprooted like so many shrubs and transported to a totally alien environment. It might be traumatic for some, but for those with severe mental, visual, auditory or mobility handicaps, it could be catastrophic. Can anyone imagine the experience? Who could be that cruel to these handicapped individuals?

According to the Centers for Disease Control and Prevention, about 17 percent of children ages 3 to 17 display one or more developmental disabilities, which are defined as a group of conditions usually lasting a lifetime. The number of individuals currently in need of permanent placement in New Jersey is estimated to be between 6,000 to 8,000. Because the number in need of placement is a function of population, it can be assumed that as the state population rises, so will the number of those in need of special placement. Closing permanent-care facilities in the face of an ever-growing need seems totally counterproductive.

An article titled “The Modern Asylum,” which appeared in The New York Times on Feb. 18, 2015, outlined the results of a study by three ethicists from the University of Pennsylvania that proclaimed “the movement to ‘deinstitutionalize’ has failed.” The researchers found undersized, poorly paid and unskilled staff members among numerous other problems and, in response, recommended a return to institutional care vs. group homes.

Problems arising from improper and careless treatments causing injuries and, sadly, the deaths of so many who were forced to relocate from a state-care institution to a community based facility are legion. Over the years newspaper articles have featured many examples of the horrific failures of community placements. A most recent and very thoroughly documented article appeared in the Asbury Park Press on June 30. The article, titled “Deaths, Abuse Take Toll at Bellwether Group Homes,” describes, in shocking detail, the many problems and outcomes that ultimately resulted in termination.

We agree that whenever possible and where the individual involved is agreeable with a move to a community-based facility, the relocation should occur. There are, however, a large number whose intellectual and developmental needs are such that moves into communities are not appropriate. It is therefore necessary that institutions like New Lisbon remain in operation. In this regard, Supreme Court Justice Ginsburg wrote in the opinion of the (Olmstead) Americans With Disabilities Act of 1990 that there is no requirement for states to close institutions nor is there any requirement that individuals must be housed in a community setting if they choose not to. In addition, it was the decision of the court that some intellectually and developmentally disabled individuals will never be capable of placement outside of an institution.

Bottom line: The Community Options model is not a final solution nor a “silver bullet.” It has the potential for positive as well as negative outcomes. What’s important is that caregivers must assume the very sober responsibility of performing one of the most important jobs in the world: care of our family members. Community Options offers another choice, along with home care, group homes and institutional facilities, all of which should be supported, maintained and efficiently utilized to benefit as many as judiciously possible. The most vulnerable and needy among us deserve nothing less.

Sander and Regina Fox live in Little Egg Harbor.



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