In the winter of 1990, a group of law enforcement and medical experts descended on a Memphis asylum where hundreds of babies, children and adults — people who used to be called mentally retarded — were warehoused in barrack-style housing.
What they found shocked the conscience: widespread abuse, mistreatment and in some instances outright depravity directed at both the elderly and the very young that went on unseen by the general public, but was seemingly accepted as routine behind closed doors for decades.
Nearly 25 years later, however, the state’s efforts to set right a legacy of terrible abuses has created a whole new set of problems.
Tennessee taxpayers now help pay for some of the most expensive care in the country for people with intellectual disabilities, defined as an IQ of 70 or less. The cost comparisons with other states show that Tennessee:
• Spends fives times more per person than the national median for nursing care.
• Ranks fifth highest in the nation in the cost for personal assistance services.
• Pays 162 percent more than the median average for residential services.
Advocates say the state’s effort to course-correct, sometimes under court order or threat of legal action, has resulted in an inefficient and inequitable system of care.
“Tennessee went kicking and screaming into de-institutionalization and spent a fortune battling it out in court when other states moved ahead,” said Deanna Claiborne, executive director of United Cerebral Palsy of Middle Tennessee. “The system we’re stuck with now was not created by citizens and legislators and family members and experts deciding what is best. Tennessee’s policy was set by judges who said, ‘You cannot continue to behave this way.’”
This year, the state has a chance to modify its system, submitting a new plan to federal authorities on how Tennessee will care for people with intellectual disabilities. State officials and advocates say they are considering new ways to provide less costly services to more people, but with a limited budget increase approved this year, advocates say it is unlikely the system can change substantially.
Problems for decades
The problems, stretching back decades, are systemic.
The U.S. Department of Justice filed suit against Tennessee in 1992 after finding residents of Arlington Developmental Center in Memphis soaked in urine, toddlers left alone in cribs for hours, adults with misshapen limbs because of a lack of physical therapy and reports of physical abuse. The abuse included a fight room where a male resident was locked in and directed to beat a female resident.
In 1995, federal officials again filed suit after finding abuse and neglect in four other facilities. Criteria set by the courts governed what services should be provided to people inside institutions and plans put in place to move them out.
But care provider agencies say they sometimes feel forced to offer too many services to individuals who do not need them — individuals who were not part of the lawsuits and have never been in an institution. That’s because the guidelines are designed to avert the possibility of future lawsuits, rather than provide appropriate care, they say.
At Developmental Services of Dickson County, Executive Director Don Redden said when his agency takes on care for individuals receiving state funding, it has to start with the assumption they need 24-hour, full-time support. The state typically requires one staff member to be present and awake for each individual at all times; sometimes two.
“We make sure we have a lot of staff,” Redden said. “If there’s anyone who needs a service, even those that are not particularly effective, we provide them.”
• Trips to the emergency room when someone falls, even if the person may not require emergency care.
• A stringent “protection from harm” system requiring agencies to report every cut, bruise or scratch.
• Behavioral therapies that often try to redirect individuals’ behaviors when they get out of hand, but may not get to the bottom of an individual having a psychiatric problem.
Redden said he sees both sides of the issue.
“People get a lot more care, and that’s a positive,” Redden said. “There are more resources. But there are no limits. And it’s costly.”
Beyond the cost, Redden said the assumption that people need constant monitoring defeats the purpose of helping people with disabilities live as independently as possible.
“You hear the state talking about the outcome of making people independent,” he said. “But that’s not what happens. We make people dependent when they’re with other people watching them at every waking moment of the day.”
State officials say there is a legacy of expectation Tennessee will provide the kind of care individuals would receive in a well-run institution even when they have left residential care — and that same level is provided to those who have never required it.
“When they are transitioned into the community, there is often an expectation — particularly under the heightened scrutiny of court monitors and others — that the intensive level of staffing and supports provided in the institution is replicated in the community,” said Patti Killingsworth, director of long-term care.
State officials are working with advocates to a more balanced system. They have already placed a 12-hour per day limit on the time one nurse cares for an individual and limited personal assistance services to 215 hours per month to reduce costs.
Other options being considered are relying more on technology, such as video cameras in homes, in lieu of more expensive one-on-one care, but that remains controversial among many advocates who are concerned about privacy intrusion.
Killingsworth said the state is also considering a monetary cap for services provided to each individual. Currently, most of the 8,000 people receiving state services have no individual cost limits.
But to truly reshape the system would require a sea change — shifting funding toward home-based care rather than waiting for people to reach a crisis in order to receive state-paid care outside their homes.
Paring back services to those who already receive them is an uncomfortable topic for both state officials or disability advocates to broach, said Carol Westlake, executive director for the Tennessee Disability Coalition, which typically urges state officials to expand services to people with disabilities.
But Westlake said the state has to find a way to change the current system.
“We wait until we’ve blown up every natural resource a person has in their home, family and community,” Westlake said. “If the only way you can get services is you are in crisis, those will be very expensive services and we will end up paying for the residential part, not just the services. We don’t want to still be here in 20 years waiting for people to get into crisis before they get care.”