NASHVILLE, Tenn. — No one can say for sure why 26-year-old Anita Hendrixson went to bed one February night and never woke again.
Hendrixson possessed an IQ of about 52, a mostly sunny disposition and what her mother described as a childlike desire to please. In the months before she died, she behaved strangely sometimes â€” falling down for no reason, sometimes in the middle of a busy street.
A series of medical visits â€” to a neurologist, psychiatrist, psychologist, neuropsychologist, primary-care doctor and emergency room physicians â€” found nothing wrong. When asked if she was falling on purpose, Hendrixson would agreeably say she was. One physician suggested she had “conversion disorder” â€” the modern term for “hysteria,” essentially all in her head.
Within months of that diagnosis, the Dickson County woman was found with her face down in a bloodied pillow, dead.
Her death highlights the challenges in providing health care to people with intellectual disabilities, whose disabilities often overshadow underlying medical or psychiatric problems.
The problem is not unique to Tennessee. Few medical schools train physicians on how to treat people with intellectual disabilities, who often cannot articulate how they feel but are far more likely than the general population to suffer serious physical and psychiatric conditions.
But the problem has been exacerbated in Tennessee in recent years, as programs designed to address the needs of these individuals have been cut â€” something state officials say they are working to address.
Among the programs eliminated:
â€¢ A psychiatric intervention service known as TN-START, launched in 2004 to prevent or decrease psychiatric hospitalizations, emergency room visits and police interventions.
â€¢ The highly praised Vanderbilt University Behavioral Health and Intellectual Disabilities Clinic.
â€¢ Crisis intervention teams at the Department of Intellectual and Developmental Disabilities’ predecessor agency aimed at helping intellectually disabled people when they had undiagnosed behaviors or symptoms.
“Tennessee offers fewer mental health services for people with intellectual disabilities today than it did 20 or 30 years ago,” said Don Redden, executive director of Developmental Services of Dickson County. Meanwhile, the need for such services continues to grow, with up to half of the more than 15,000 people with intellectual disabilities who are receiving or waiting for state services suffering from a psychiatric condition.
Officials with Redden’s agency, which provided full-time caretakers for Hendrixson through a contract with DIDD, have met repeatedly with department officials to discuss the need for better care. Before Hendrixson’s death, agency staff tried numerous times to find help for Hendrixson, even paying out of the agency’s own budget to take her to specialists in hopes of pinpointing what was wrong.
Prompted in part by concerns from private agencies that oversee much of the day-to-day care provided to people such as Hendrixson, DIDD has begun stepping up efforts to restore or add some services.
A new website, www.iddtoolkit.org â€” developed by DIDD, the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities and the Boling Center for Developmental Disabilities at the University of Tennessee â€” aims to provide primary-care doctors guidance in how to interact with patients and assess their physical health and behavioral issues.
DIDD is working with the Department of Mental Health to train 15 mobile crisis workers to better respond to psychiatric emergencies. The state has budgeted $71,000 for this and other training that used to be part of the TN-START model, while not restoring the full program, which cost about $800,000 a year to run. About 20 other regions across the nation have adopted the full program, based on data showing the successful outcomes of Tennessee’s now-defunct program.
A Behavioral Services Advisory Council is focusing on crisis care. DIDD is now requiring agencies that contract with the state to provide care to develop crisis plans for individuals to anticipate and plan for emergencies.
As the state develops a new five-year plan to submit to the federal Medicaid program on how it will provide services to people with intellectual disabilities, it is considering alternatives â€” but those must fit within the existing budget, said Dr. Bruce Davis, DIDD’s director of behavioral and psychological services. DIDD is operating on a budget that is nearly $40 million less than it was seven years ago.
“It’s not something we’ll be able to solve overnight,” Davis said.
The weight of Hendrixson’s death hangs heavily on her parents and sister, whose grief gives way to moments of remembered joy at the young woman with a lifelong adoration for Tinker Bell and a constant companion she named April Grace â€” a yellow stuffed bear that now lies with Hendrixson in her grave.
But Hendrixson’s mother remains furious, too.
“Everyone who treated her couldn’t see past her disability,” said Jean Hendrixson, who after scouring medical websites now believes her daughter suffered from a rare and deadly muscle weakness disorder. “They wrote her off … they treated her like the disability was the problem, not trying to find out what was truly wrong.”
Her death also weighs heavily on those who cared for her. But Officials with Developmental Services of Dickson County also find no solace in the lack of answers about why the bubbly young woman died. An autopsy found no conclusive answers.
“We loved Anita,” said Katie Powers, associate executive director for the Dickson agency. “We tried to get her whatever help she needed. … We just couldn’t find it.”