developmental disability

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Disabled Patients Fight For Care As Institution, Slowly, Shuts Down

In case you missed it (or don’t subscribe to The Wall Street Journal) check out this excellent story about the few remaining residents of the Fernald Developmental Center in Waltham, which is the oldest state-run institution in the nation for men and women with developmental and intellectual disabilities.

There are 13 residents left, The Journal reports, and their families, bucking the national deinstitutionalization trend that began decades ago, want them to stay put and receive the individualized care they’ve come to depend on.  The state says it’s time to go:

Massachusetts wants to move the last residents from Fernald and sell the 186-acre property. But their families want them to stay, saying Fernald’s experienced caregivers and familiar surroundings are irreplaceable. The matter has gone to court.

A Community at a Crossroads

About 30,000 people remain in 160 state-operated facilities in the U.S., including many who face similar dislocations. Like those at Fernald, they tend to be older, with complex physical and psychological needs. Many require one-on-one care.

Families say uprooting people with such limited coping skills is too traumatic. State authorities say smaller settings are better than larger public facilities; they cite thousands of successful transfers.

What is different about Fernald is that its residents have legal rights others don’t. In a class-action suit, they were awarded in 1993 a guaranteed level of care, regardless of cost, to compensate for decades of abuse and neglect.

Those costs, indeed, are high. It costs $10.9 million a year to keep Fernald open for 13 people, state officials said. The per-resident cost at Fernald is about four times the national average of $220,119 spent at other state-supported institutions, according to a 2013 report by the University of Colorado. About a third of the cost to run Fernald pays to run a utility plant built to power buildings that are now mostly unused…

The dispute puts Massachusetts in the uncomfortable position of uprooting some of its weakest residents in a messy court fight.

“It’s a horrible dilemma,” said Michael’s mother, Linda Martin. Her son functions on a level of someone between the ages of two and six. He is capable of hurting someone or himself, without apparent provocation, said Mrs. Martin, who carries M&M candies to placate him during visits.

Kevin Fitzgerald, severely autistic and institutionalized as a child. (George Hicks/WBUR)

Kevin Fitzgerald, severely autistic and institutionalized as a child. (George Hicks/WBUR)


A horrible dilemma is right. Recently, we reported on Kevin Fitzgerald, a severely autistic man institutionalized since childhood who was moved into a state-run group home as a young adult.

Kevin, who was losing his eye sight due to cataracts, but had huge problems finding a surgeon to treat him because of his erratic, sometimes scary public behavior, is one of about 32,000 people with intellectual disabilities (what used to be called mental retardation) eligible for services in Massachusetts, Continue reading

Festering Cavities, Missing Teeth: Desperately Needed Dentistry For Disabled

(U.S. Department of Defense Current Photos/flickr)

(U.S. Department of Defense Current Photos/flickr)

Most people consider going to the dentist a minor inconvenience.

But for patients with an intellectual or physical disability, it can be a major ordeal.

Recently, there have been several reports on the significant obstacles people with all kinds of disabilities face in accessing the medical care they need.

People in wheelchairs, for instance, struggle with significant barriers trying to get appointments with medical specialists, according to a recent study by Dr. Tara Lagu, an internist at Baystate Medical Center in Springfield, Mass. And if you’re poor or mentally ill, dental care is even tougher to access, notes a 2011 report from the Institute of Medicine. Here, a dentist and Tufts University associate professor who treats people with disabilities offers his perspective on overcoming the towering barriers to oral health for the disabled.

By John Morgan, DDS
Guest Contributor

Dental care for people with disabilities can be particularly complex. It can also be life-changing.

Consider this:

An acquaintance of mine has a teenage daughter with a mild-to-moderate intellectual disability who attends a middle school in Boston. Because of badly aligned teeth and an open bite, she couldn’t close her mouth completely or use her tongue to speak effectively. On the recommendation of her daughter’s speech therapist and the encouragement of hygienists working with special needs children, the girl’s mother found a dental office that could manage her daughter’s dental care.

For three years, the daughter and her mom made three-hour trips by public transportation for monthly (sometimes more often) visits the dentist. But it was worth it. When the orthodontic treatment was completed, the girl’s speech was so improved that she was able to gain employment at a local fast food restaurant. She had gone from shy, awkward girl who hardly spoke to a girl who smiles and talks and enjoys being social.

On WBUR recently, Rachel Zimmerman’s piece, “Caring For Kevin: An Autistic Man, An Exceptional Doctor, A Life Renewed” – sheds needed light on the unique challenges of medical care for people with disabilities and their caregivers. Oral health is a fundamental part of overall health, and dental care for people with disabilities presents similar complexities. The challenges to providing dental care can be at least as complex, if not more so.

A recent study I conducted with my colleagues at Tufts University, published in The Journal of the American Dental Association documented the urgent need for dental care among people with intellectual and developmental disabilities. For instance, they are much more likely to have poor oral hygiene, periodontal disease, untreated tooth decay and missing teeth than the general population. Specifically, in our review of the electronic dental records of more than 4,700 people who received care, we found:

•10.9% of all patients did not have any teeth Continue reading

Caring For Kevin: An Autistic Man, An Exceptional Doctor, A Life Renewed

Kevin Fitzgerald, after surgery, his vision restored (George Hicks/WBUR)

Kevin Fitzgerald, after the second of two eye surgeries, with his vision restored (George Hicks/WBUR)

By Rachel Zimmerman

Kevin Fitzgerald is parked in a wheelchair near a set of elevators at Boston Medical Center, tense with fear.

He’s a big guy, nearly six feet and about 280 pounds. But because of his severe autism, Kevin can’t verbalize his thoughts. He can only moan.

Dressed in her scrubs, Dr. Susannah Rowe, Kevin’s eye surgeon, sits on the floor next to him. While waiting for a heavy dose of anti-anxiety meds to calm her patient, Rowe practices what she calls “verbal anesthesia.” “It’s OK to be afraid,” she tells Kevin. “Want to hold my hand?”

Institutionalized since childhood, Kevin, now 56, has been losing his sight for the past two years to the point that doctors said he can see little more than shadows. He’s here at BMC awaiting cataract surgery, a fairly simple procedure that generally takes about 30 minutes in the operating room. But for Kevin, who has long feared doctors and has a history of aggressive, unpredictable behavior — like hitting himself or inadvertently hurting others or running away when he’s in distress — the procedure isn’t simple at all.

Surgeon Susannah Rowe, anesthesiologist Oleg Gusakov, M.D. and nurse anestheticst Dale Putnam, CRNA, prepare Kevin for surgery. (George Hicks/WBUR)

Dr. Susannah Rowe, anesthesiologist Oleg Gusakov and nurse anestheticst Dale Putnam in the pre-op room with Kevin. (George Hicks/ WBUR)

It’s not simple for the doctors, either. They’re practicing a special art: medical care for the disabled and mentally ill. It often breaks the rules of traditional care, loses money for their practices and can even put them at physical risk if a frightened patient spins out of control.

But there’s a huge need for such specialized care. As many as 50 percent of people with intellectual disability (defined as an individual with an IQ of 70 or less and difficulty functioning in daily life, among other criteria) have vision problems, according to state experts. And a far higher proportion of these disabled patients have severe vision problems compared to the general population.

With delayed or limited access to treatment, these men and women can begin to lose their already-tenuous connection with the physical world; and their behavior, driven by fear and the inability to understand why things are growing darker, can deteriorate further toward what looks like aggression. Rowe, the surgeon, says anyone with a disability or severe mental illness whose mood, anxiety or behavior gets worse should immediately have their vision checked.

Join doctors in the operating room for Kevin’s surgery. Warning: It gets graphic.

Kevin’s situation may seem exceptional but he’s not alone. According to the state Department of Developmental Services, there are about 32,000 adults and children with intellectual disability (what used to be called mental retardation) eligible for services in Massachusetts. About 9,000 of these adults live in group homes.

But not everyone with an intellectual or developmental disability is getting the care they need, experts say. Consider:

  • A recent Massachusetts study found that people with autism still face significant barriers in accessing medical care, and it’s worse for patients like Kevin, who can’t fully communicate.
  • A 2009 survey of eye specialists from around the state found that while most providers believe patients with intellectual disabilities require 30-60 minutes longer for a medical appointment, the vast majority of the specialists didn’t allot that extra time.
  • According to a 2004 Public Health Reports article: “Research indicates that most individuals with developmental disabilities do not receive the services that their health conditions require…[and] individuals with mental retardation face more barriers to health care than the general population.

Research has also demonstrated that many primary care providers are unprepared or otherwise reluctant to provide routine or emergency medical and dental care to people with developmental disabilities.”

Andrew Lenhardt, a primary care doctor in Hamilton, Mass., who treats many disabled patients, including Kevin, says: “The level of dignity and respect and basic medical care that’s given to people with disabilities is often meager…These people can’t advocate for themselves, they’re an easy target to be treated inadequately or poorly.”

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