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Meeting the needs of the developmentally disabled: How doctors offer treatment
■ Physicians and advocates for adults with mental retardation and developmental disabilities are working to ensure that these patients do not fall through the cracks.
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Chris Prater, MD, a family physician in Chattanooga, Tenn., gets part of his pay in hugs. As the medical director of the Orange Grove Center, an agency serving patients with mental retardation and developmental disabilities, he provides thousands with much-needed primary care services.
"I've been here two hours today, and I've already gotten probably 20 hugs and kisses," he said one morning. "I can't stand it. They love me. I love them."
Many of his patients can't communicate very well. Some might have significant co-morbidities related to their disabilities. And sometimes they must be driven to the door several times before they'll come into the office. It could take several more visits after that before they'll let him actually examine them.
"We gradually work them into the lobby of our place, and then into the waiting room and then into the office," Dr. Prater said. "And once we get them in, for a lot of them, this is their favorite place to go, because we baby them so much."
Dr. Prater is part of a growing cadre of physicians attempting to deliver high-quality primary care in a specialized clinic setting because of a recognition that the needs of adults with mental retardation and developmental disabilities is so great and, for the most part, unmet.
"This patient population has not had equal access," said Steven D. Lowe, MD, an internist at Premier HealthCare, a New York City center providing primary health care services to this population. "I know this because I've seen countless patients who have fallen through the cracks with such severe medical problems you can't believe that they haven't come to the attention of the medical community."
Forty years ago, these people would have been cared for by physicians working in the institutions where most of them lived. Today, less than 1% are institutionalized, a number projected to drop to zero by 2025.
Physicians and other experts are increasingly recognizing that this trend, accompanied by improvements in health care that allow more newborns with disabilities to survive into adulthood and even old age, mean that more of these people than ever are in the community. And they have health care needs similar to those around them.
Meeting those needs, however, is a challenge. Pediatric care for this population is widely regarded as excellent, but several reports have suggested that care for adults with special needs is not quite as good.
"It's a mess out there, because there's not a systematic approach," said Steven M. Eidelman, executive director of the advocacy organization The Arc of the United States.
Some might not be able to convince a physician who cares for adults to see them. In some cases, this leads the adult patient to either receive no care at all or see a pediatrician long after nondisabled peers have moved on.
"A lot of the burden of care is falling on the pediatrician," said Rick Rader, MD, director of the Morton J. Kent Habilitation Center at Orange Grove. "But there's nothing more inappropriate than a 45-year-old-woman getting her gynecological care from a pediatrician."
Experts say that although access to care can be tricky and is important, there are other concerns. Most adults with developmental disabilities do seem to see a doctor fairly regularly. For example, a 2000 Special Olympics report, "The Health Status and Needs of Individuals with Mental Retardation," found that as many as 80% had seen a primary care physician in the past year, and those who sought health care averaged nearly three visits annually. But advocates say the quality is often less than ideal.
"Just because you've been seen by a doctor doesn't mean necessarily that you've gotten good service," said Philip May, MD, an internist and president of the American Academy of Developmental Medicine and Dentistry. "A lot of the customers for medical services wouldn't know good service from bad because they've had no service in the past."
And this lack of quality can be just as dangerous as no care at all.
According to the same report, those who have mental retardation or developmental disabilities have a preventable mortality rate that is four times the general population. Also, while the general population had a life expectancy of 77 years in 2000, those with mild to moderate mental retardation were expected to live for only 66 years. Those with severe retardation could only be expected to live until age 53.
A significant part of this disparity could be due less to mental function than health care not received. This situation translates not just to a shortened life but to a large amount of human suffering.
Dr. Prater has treated patients whose gastric reflux has been untreated for so long they have precancerous esophageal lesions. Dr. Lowe has treated end-stage organ damage resulting from years of untreated hypertension or poorly controlled diabetes.
"If you don't check them, you're going to miss a lot," Dr. Prater said. "These folks need the same preventive care that everybody else does."
But while advocates praise clinics such as those of Dr. Prater and Dr. Lowe, they say such facilities are not the solution to providing good health care to this patient group. They would like to see these clinics slowly fading away, much like the old institutions, and want more primary care physicians to step into the breech.
"We need more integration because that's how families are," said David Coulter, MD, president of the American Assn. on Mental Retardation. "Why does the person with a disability have to go off to some center when everybody else sees their doctor down the street?"
For the time being, most expect that care will be shared between the specialized clinics popping up around the country and the increasing number of family physicians, internists and other primary care physicians willing to include those with mental retardation and developmental disabilities in their usual practice.
Barriers to full integration, though, are significant.
"But it's a challenge, and the people who can do it in a regular office are to be commended," Dr. Lowe said.
Reimbursement issues
According to the 2002 landmark surgeon general's report, "Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation," the most significant challenge was and remains reimbursement.
People with mental retardation "struggle with unwieldy payment structures that were designed decades ago when people with MR often died in childhood or lived out their lives in residential institutions," wrote then-Surgeon General David Satcher, MD, PhD.
Most have less access to services once they are older than 18 and rely on Medicaid or Medicare to cover their health care needs. Reimbursement is low, and those with special needs might require more time during exams, making the choice to provide care to this group even less appealing, particularly at a time when most doctors are seeing ever-shrinking margins.
"The reimbursement is problematic, and they tend to have a fairly long list of problems, so they take a bit more time," said Thomas C. Rosenthal, MD, chair of the Dept. of Family Medicine at the State University of New York at Buffalo, who has long incorporated developmentally disabled patients into his practice. "The cost-benefit ratio is imbalanced for the developmentally disabled."
In an effort to address this issue, the American Medical Association adopted a policy at its December 2003 meeting stating that reimbursement should reflect the true cost of health care for these individuals.
"These people deserve equal care," said J. Mack Worthington, MD, a family physician who spoke at the AMA meeting and chairs the medical committee at Orange Grove.
But while most experts agree that reimbursement needs to improve, they don't think it's the root of the problem. A lack of familiarity is.
"The general consensus is that, when you get right down to it, physicians will see these patients, even if you don't make the big bucks. We're not as greedy as many would represent us to be," said Dr. May, who is also director of the developmental medicine program at the Robert Wood Johnson Medical School in New Jersey. "If you're not familiar with something, if you're uncomfortable, if you're overwhelmed by the complexity of a case and you don't know how to manage it, you try to avoid that."
For example, before he started caring for special needs populations full time in 1992, Dr. Prater admits that he had a certain level of fear. Doctors might have no idea where to start with a patient with developmental disabilities or be concerned the patient may make the waiting room uncomfortable for others.
"Most doctors just don't know what to do," Dr. Prater said.
Thus, efforts to improve care are heavily focused on incorporating information about this population into medical school programs, residency curricula and continuing medical education.
"The goal is to train doctors who would be willing to provide primary care for people with developmental disabilities within their regular practice," Dr. Coulter said.
But while integrating developmentally disabled adults into the health care system is no easy task, the role of the primary care physician is important to this special population because of the variety of health issues these patients confront.
"[A] fragmented multispecialty approach leads to a lot of toxicities and poor outcomes," Dr. May said. "You need the jack-of-all-trades to coordinate care."
The primary care emphasis on prevention can be even more important for this group. For some, the syndrome that causes their intellectual impairment and the medications used to treat them also could make them more susceptible to chronic conditions such as osteoporosis, high cholesterol or diabetes.
"The need for primary care in this population is probably greater than the need for primary care in any other population," Dr. Lowe said. "As a society, it's desirable to provide them with every opportunity we can to improve their quality of life."