The recent dialogue about the Governor’s plan to close New Jersey’s Developmental Centers has elicited an unanticipated number of responses from family members of people with developmental disabilities who currently reside in such residential centers, or have in the past.
The debate among members of the disability community concerns whether all residents should be transferred to the community. While everyone agrees that community placement is preferable, and all agree they those residents who request the transfer should be given the opportunity to do so, the debate stems from whether every resident’s needs can be met in a community setting.
In addition, a question remains regarding whether a sufficient number of appropriate community placements are available. Furthermore, the issue of whether we have adequately trained and qualified staff available for direct care remains emotional and controversial.
Karyn Walsh, a Developmental Disabilities Advocacy Writer and Researcher, and the parent of a daughter with a developmental disability, has recently contacted this writer about the debate. According to Ms. Walsh:
“...our daughter has been in a community residence for nearly 13 years, and we consider ourselves remarkably blessed by the opportunities she has had to grow in independence and self esteem. So from both my personal experience, and from advocating for community based services lo these many years, I agree with you, that for the vast majority of people with intellectual/developmental challenges, those residential placements in the community must be advocated for and protected by all who know their value. But, even though I would not wish placement in an ICF/MR (Intermediate Care Facility for clients with Mental Retardation) or developmental center for anyone whose fervent hope is to live, work, play, and, yes, pray in their community, I think we should, in all fairness, recognize the needs others may have for more restricted settings. I'm thinking of those people whose whole world would suddenly change if they were, without their wishes, removed from a place they had called home for many years, from people and surroundings that were familiar and comforting to them. Believe me, I know about the abuses and neglect that occur in institutional settings...I live in New York State...however those abuses can occur in community settings as well (and have been documented in other articles by Danny Hakim in the Albany New York Times), so both require vigilance in the form of quality assurance oversight and the federally mandated Protection and Advocacy programs in each state. It certainly it has been well illustrated that, in addition to being more integrated, community placement is much less expensive. However, while you, I, and others may think that community is the absolute best setting for everyone, perhaps we are forgetting the wording of the Olmstead... 'least restrictive setting APPROPRIATE TO THE NEEDS OF THE INDIVIDUAL.' And if person-centered planning is about an individual's choice as to where that individual wishes to live, why must those residential opportunities be 'either/or'? Said another way, I may not agree with what one says, but I will defend their right to say it...does that not apply to defending one's right to choose where they want to live?”
This issue has been highly charged because of the coupling of the anxiety of family members with the administrative and political goals of the Governor’s Office. Christie’s staff obviously views the issue in terms of dollars and cents. Currently, an endless waiting list exists for the residential placement of people with developmental disabilities who live with family members who are aging. The waiting list gets longer and longer as new applications are made, with no end in sight. Unfortunately, not enough community vacancies exist. Most families wait a minimum of seven years before their disabled loved one can be placed. Closing the developmental centers will create an even greater backlog and extend the waiting period further.
The member of the Governor’s Task Force on the Closing of the Developmental Centers has indicated that the State is moving much too quickly to close the centers. In addition, the families of these disabled people are left out of the decision-making process. According to the testimony of a developmental disabilities professional, it would take decades to create a sufficient number of appropriate community settings and even longer to adequately train direct care staff. Yet, people with developmental disabilities are being “dumped” into inadequate settings as this article is being written. In such settings, these individuals are without adequate medical care and supervision, and, in some cases, become the victims of abuse.
We are currently embroiled in a “rush to judgment” regarding the closing of developmental centers. As has been previously noted, community placement must be decided on an individual basis. Unfortunately, the decision-making factor continues to be money, at the expense of the quality of life for these individuals.
Dr. Salvatore Pizzuro, a Disability Policy Specialist, holds a doctorate in Developmental Disabilities from Columbia University and an advanced degree in Disability Law from New York Law School.