Published Date: 2013-04-29

by Deborah Smith, North Jersey Record

One size doesn't fit all

Deborah Smith is a board  member of Save Residents’ Homes at Developmental Centers. She lives in  Paterson and is  the mother of Kesha Smith. who resides at North Jersey  Developmental Center.

ON FEB. 26, Governor Christie announced his plans to increase his commitment to New Jerseyans with disabilities by moving away from a system that has historically focused on institutionalization to one that emphasizes home- and community-based services and support. Christie said his commitment is to provide people with disabilities the ability to live among family, friends and neighbors, as well as comply with the Supreme Court decision requiring that people with developmental disabilities be able to live in the least restrictive environment.

What Christie fails to recognize is that the least restrictive environment does not have the same meaning for everyone in the developmentally disabled community. There are at least two segments of the developmentally disabled community: the profoundly intellectually disabled (IQ level below 20 to 25) and the mild (IQ level 50 to 70) to moderately (IQ level 35 to 55) intellectually disabled.

Two distinct populations

For those with profound intellectual disability, the least restrictive environment for this population is developmental centers where comprehensive medical care is provided to the residents under the Intermediate Care Facility for the Mentally Retarded (ICF/MR) federal-care model for the most vulnerable of our society. Most of these residents have limited or no speech. They are toddlers in adult bodies, and most have a variety of chronic medical conditions. Developmental centers provide healthcare and social services, as well as medical services based on the residents needs determined by a team of professionals in conjunction with input from parent or guardians and family members.

For the mild to moderately intellectually disabled, the least restrictive environment means community-based programs, such as group homes where the objective is to increase the independence of the residents. These facilities do not have medical experts constantly available on-site and need to call local EMTs through 911 for any medical emergency. Group homes focus on increasing the daily living skills of residents, which include meal preparation, laundry, housecleaning, even money management, and on self-care skills, such as bathing, dressing, toileting, eating, and taking prescribed medications.

Families left with poor choices

The Olmstead U.S. Supreme Court decision, on which the governor says he based his decision, actually recognized that one size does not fit all for care. The court decision states, “We emphasize that nothing in the Americans with Disabilities Act or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings … Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

The decision to close North Jersey and Woodbridge developmental centers have left parents or guardians and family members with two choices: Community placement, which would allegedly keep our loved ones living close to their families, or a development center that could be more than 100 miles away from us.

For me, as the mother of a 42-year-old resident of North Jersey Development Center, community placement is unsuitable for my daughter and others like her. These two choices are unacceptable and unfair, and they may result in seeing our loved ones regress — losing all of the progress they have gained over the years.

One size don’t fit all. Every resident living in a development center does not have the ability to function in a group home.

Group homes are great for those who posses the functional ability and desire to live there because they meet the needs of that population. Likewise, developmental centers meet the unique needs of the population that reside in them. The governor’s budget will increase funding for these types of programs, and that is good news for the family, friends and supporters of the 8,000 mild- to moderate-developmentally disabled individuals on the waiting list for these services.

Unfortunately, it also appears to me that family members of the developmentally disabled community will be forced fight each other for the same slice of Christie’s budgetary pie, and that would be shameful. We should all stand together, advocating for programs that meet the unique needs of our loved ones, because one program cannot meet the needs of all.