President's Forum | Closing the Gap, by Zena Naiditch

Closing the Gap

by Zena Naiditch

My editorial for this issue originally was planned to reflect my personal thoughts and observations about the political struggle over closure of Lincoln Developmental Center and its implications for the future (see lead article in this issue). Equip for Equality, along with other advocates, has generated a great deal of pressure in the media, based on its firsthand observations of the Center's miserable failure to protect the rights of its residents with developmental disabilities.

However, with the publication of the eloquent and comprehensive editorial that appeared in the June 30, 2002, edition of the Chicago Tribune, my words would be superfluous. There's no doubt that the final outcome - the shuttering of Lincoln - was influenced by the Tribune's clear and forceful stand. =

Preserving Jobs but Risking Lives

The notorious Lincoln Developmental Center, in central Illinois just north of Springfield, illustrates perfectly how entrenched politics and job preservation too often nudge aside the health and safety of the state's most vulnerable individuals.

The center's curious endurance also helps explain why Illinois lags so pathetically behind the rest of the country in the way it cares for mentally and developmentally disabled adults. Among the state's 11 institutions that care for disabled adults, Lincoln stands out for its record of neglect and abuse, which has resulted in injuries, surgeries, hospitalizations and even the death of some residents.

For the last six years, Lincoln has been cited more often by the state Department of Public Health for serious incidents than any other center. Last fall, the federal government temporarily decertified, Lincoln, jeopardizing the federal funds that help to preserve the absurdly expensive, $35 million-a-year monstrosity.

The state has poured buckets more money into training and retraining workers at the center, increasing its staff-to-residents ratio and lacing it with monitors. The feds have pitched in more money, too. And still, Lincoln is no better.

The place should have been shuttered long ago. The residents should have been placed in good, neighborhood-based homes to receive care. But the state's all-powerful employee union, together with the center's 540 workers and the town of Lincoln, are fighting that with all they've got. And they've helped convince family members of the 240 adult children there that all change is bad.

In an election year, those concerns get elevated to the status of sacred-safety or financial sense be damned. The major candidates for governor; Jim Ryan and Rod Blagojevich, already have reflexively pandered to union interests (even amid the state's budget calamity) by declaring support for keeping the center open. In this case, there are no votes for doing the right thing.

Sometimes change is necessary. At Lincoln, it's beyond necessary.

In The past four years, seven residents have died. One choked to death on his own vomit after being held down for more down 35 minutes by five staff members. Another resident died after a prolonged seizure resulting from a lack of proper medication and inadequate health services. A resident who previously had stolen and ingested pills from a worker's purse did so again, overdosed, and died.

In March, four residents died-three apparently from a flu outbreak or pneumonia as residents were being resituated within the center, and one from complications following surgery.

Numerous other incidents, including another four in recent weeks, have been documented of patients ingesting latex gloves, dominos and pen caps, or being left unattended in bathtubs or forgotten at the end of the day. These are signs of inattention. Last year, one nurse used a bed sheet to choke a resident who was in restraints; the incident wasn't reported until three weeks later. There is a better solution: Integrate these residents into smaller, community based settings. That alternative happens to be a trend the rest of the country has followed over the last five decades: 10 states now have no institutions.

It's also preferred by the U.S. Supreme Court. In its landmark 1999 Olmstead decision, the high court found that institutional confinement severely diminishes individuals' everyday life activities, such as social contacts, educational advancement, family relations and cultural enrichment. The court also ruled that the unwarranted institutionalization of developmentally or mentally disabled individuals is a form of discrimination.

Roughly 3,000 people with developmental disabilities live in the state's 11 institutions. It costs $106,000 a year, on average, to keep them there. Compare that to the average cost of a person living in a community setting with 24-hour care: $44,000 to $51,000. So roughly a quarter of the $1.2 billion spent on individuals with such disabilities goes toward less than 5 percent of this population. That puts Illinois behind only Texas, California and New Jersey in terms of the number of its developmentally disabled population living in state-run institutions.

To be sure, Illinois needs to bolster its community-based system; problems abound there too. A far better investment in neighborhood care must be made to attract a higher caliber of worker, to reduce chronic turnover and to adequately care for the most severely disabled, most costly residents. But even after that, the state is likely to save while providing better care.

Gov. George Ryan has said he wants Lincoln closed, but that is being fought in court by the union and parents. Either Jim Ryan or Rod Blagojevich will have to summon the political courage to follow through. It's time to shut this dangerous, abysmally run cash sinkhole for good-- in the name of residents' safety and taxpayers' wallets. =

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