Op-Ed: Disabled Need More Care Options

Philadelphia Inquirer
March 22, 2009
By Lou Greenwald

Reggie Davis-Johnson is his own man. He has a job, lives with roommates, and spends time with friends. He goes to Wawa to get his favorite coffee whenever he likes. Most of all, he's happy.

It wasn't always this way. Born with mental disabilities, Reggie was institutionalized for 18 years. Though he received excellent medical care, he was unable to make many decisions for himself. Since moving to a shared-living home in Voorhees, Reggie has flourished. More independent, he can achieve his full potential as a member of the community.

Reggie's success story is heartwarming, but rare. Unfortunately, New Jersey hasn't been progressive in providing those most in need - those suffering from mental retardation, autism, cerebral palsy, and other developmental disabilities - with the same opportunity.

Nationwide, 140 major institutions for the developmentally disabled have closed in the last 40 years; New Jersey has not closed one in 10 years. New Jersey has the third-highest rate of institutionalization, behind only Louisiana and Mississippi. And the state spends one-third of its developmental disability budget caring for only 8 percent of developmentally disabled New Jerseyans.

The state estimates that 75 percent of New Jersey's institutionalized men and women don't require an institutional level of care. That's truly alarming; three out of four individuals in New Jersey's developmental centers could be better served with community care but aren't receiving it. The state is warehousing patients, rather than finding the most effective and appropriate options for caring for them.

The status quo is a moral failure. I have introduced legislation that would rebalance state funding to invest in a range of options and increase choice for the developmentally disabled - from group residences to supervised individual apartments with expertly tailored assistance and everything in between.

Creating more community programs will also drastically reduce the Community Services Waiting List - a stressful purgatory of 8,000 people that has doubled in the last 10 years. Tying up resources in costly institutionalization has left us unable to make a dent in this waiting list. Investing in community care would be smarter spending, as community settings cost about $300 daily per person, compared with $641 for institutions. We can provide higher-quality care more cost-effectively.

Some falsely suggest this approach would harm those who require the intensive care an institution provides. In reality, developmentally disabled individuals, their professional care teams, and their loved ones would choose the best course of care. Institutional care will remain an option for those who need it.

Others raise concerns that some state workers may lose their jobs. But the jobs will still be there, and we will retrain and redeploy employees to support community programs.

By bringing everyone - family members, advocates, national experts, employee representatives, and public officials - to the table, we can provide maximum benefit to the developmentally disabled in a way that is fair to all involved. We have a choice between better care or the status quo, between more stories like Reggie's or more of the same.

Louis Greenwald represents part of Camden County in New Jersey's General Assembly. E-mail Louis Greenwald at AsmGreenwald@njleg.org