Message from the CEO

ValIn a July 19 Editorial in the STAR LEDGER, there was yet another call to keep people with intellectual and developmental disabilities in state institutions.  This perspective, unfortunately, is driven by an assumption that individuals with intellectual and developmental disabilities (I/DD) are only safe in a congregate setting accompanied by a presumption that individuals with I/DD are not capable of functioning in the community. But those of us in the advocacy and provider community, who work or live with people living with I/DD, know that there is ability in disability. Individuals’ desire to have lives filled with social interaction, learning, recreation, and work – among their ‘able’ peers.

A recent OLS audit, which reviewed the care of people with I/DD who moved from the developmental centers into the community included findings that have some suggesting that the state reconsider its policies on community living. This would be unwise on so many levels. A settlement with Disability Rights New Jersey requires people with disabilities to be served and supported in the least restrictive, integrated setting. While New Jersey has made great strides in integrating people in the community, we remain one of the states with the lowest percentage of transitioning individuals from developmental centers to the community.

That said, poor quality of care for people who depend upon caregivers is not acceptable in any setting. It’s not okay in a home, in a daycare or a school, in a nursing home or hospital, in a developmental center or a group home. This is not disputable. However, we don’t tell people they can’t go to the hospital because someone else there had a difficult surgery. We retrain staff. We learn new strategies to protect people in care from injuries. We develop improved protocols and oversight.

The state has several checks and balances to monitor and cite agencies that do not maintain a high standard of care such as licensing, ongoing inspections and audits, among other safeguards. The above referenced audit report noted that “DDD completed the required procedures for relocating residents…and monitored these clients in accordance with its policies.” I will note that in the last three years, 600 individuals have moved successfully from the state’s institutions, and they are thriving, with parents and family members throughout New Jersey that will attest to the positive outcomes and improved quality of life.

Patricia Watson’s son, Larry, spent 39 years in institutional settings including Trenton Psychiatric Hospital, ANCORA and ultimately the North Princeton Developmental Center. Her son now resides in a group home operated by Eden Autism. Patricia shared that her son “now has a routine, activities, a job and self-worth” “… It’s not just a job to the staff at Eden; we’re all family and he’s now in an atmosphere where he can learn and be independent.” Pat Gilmer from Massachusetts recently moved to be closer to her brother, Robby, who just celebrated his sixth year with Quality Management Associates (QMA). She shared that Robby was weaned off the many medications he took to address his disruptive behavior while residing in multiple developmental centers and he is now calm and happy. She noted, “I cried when I realized six years ago that Robby would smell turkey cooking on Thanksgiving for the very first time as staff cooked for all the residents of the group home.” Pat noted that “…what’s most important is that Robby can now make his own decisions.”

There are stories upon stories about individuals, even those with fragile medical conditions, who have transitioned successfully to a community setting and, yes, they deserve the best possible care that can be provided.  This is the very reason that providers throughout the state ensure there is ongoing training to develop and retain a workforce that understands and provides quality care, while at the same time providing opportunities for people to live active, dynamic lives and reach their potential.