LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.
“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”
Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest.
“But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”
For years, parents like Ms. Kramer have struggled to find compassionate health care for their adult children with profound disability, among the most medically underserved populations in the country. They are told their children are not welcome: too disruptive in the waiting room, too long in the examining room — beyond the abilities of doctors who have no experience with intellectual disability.
“It’s been really hard to find anyone to even take him,” Ms. Kramer says. “Much less the experience when you go into a waiting room with someone as challenging as Trey.”
Now, though, Ms. Kramer has a place to go. A motorized lift raises her son into her customized Ford Econoline van, where a home care aide named David Stodghill keeps some fudge cookies nearby as positive reinforcement for Mr. Kramer.
“Cookie?” Mr. Stodghill asks.
“Muh,” Mr. Kramer says, a response that can mean yes.
“Ready to roll,” his mother says, closing the door.
Off they go into the wintry Kentucky rain, bound for refuge on the other side of Louisville: the Lee Specialty Clinic, one of the very few free-standing facilities designed exclusively to provide medical and dental treatment — and a sense of welcome — to people with intellectual disability.
The 17,000-square-foot clinic, which opened in June, offers certain amenities. A reception area with natural light and easy-to-clean cushions. Extra-wide halls. Scales designed to weigh people in wheelchairs. An overhead tram to lift patients into dental chairs.
Just as important, say the clinic’s co-directors, Dr. Henry Hood and Dr. Matthew Holder, is its staff, trained to understand what their patients and families have been through. For example, Dr. Hood says, parents will often recall being told at the last medical clinic “to get your son or daughter out of here, and don’t ever bring them back.”
As Trey Kramer is wheeled through the Lee clinic’s front door, calls of “Hello” and “Hey, buddy” greet him.
“You don’t have to worry about sitting in the waiting room, and ‘Oh, my gosh, what if he goes off while we’re in there?’ ” Ms. Kramer says. “Because here — it’s no big deal.”
“We’re not the odd man out,” she adds. “We’re more the norm.”
A Life on Edge
There is no typical. Some days, Mr. Kramer seems content; other days, the sound of the microwave, or of running water, might spark a day of agitation, moaning, and biting himself. He can be compliant or he can be manipulative: biting himself, say, to get attention. You never know, his mother says.
She might come home from cleaning other people’s houses — a job she began 30 years ago for the flexible hours — to have caregivers report that her son had suddenly become violent. The reason could be as basic as the sound of a neighbor mowing his lawn. When the mowing stopped, the screaming stopped.
“He hears things most people don’t even think about,” Ms. Kramer says.
She edges through the morning, intent on not disturbing him. With luck and the help of an aide, she gets him to his day program. She cherishes the half-hour she has alone before she heads out to clean. She comes home in the afternoon to engage in the nearly impossible task of preparing his dinner in tiptoe quiet.
“It just always revolves around the noises,” she says.
All the while she is running back and forth to his room to make sure that he is content and safe. Sometimes he likes the Golf Channel on television, sometimes country music on the radio, and sometimes nothing will do.
“He’s very intelligent,” Ms. Kramer says. “He realizes how difficult it is to be him.”
With some medication, Mr. Kramer falls asleep around 11 p.m. For the next two hours, his mother sits at the small dining room table, beneath a “Live, Laugh, Love” wall plaque, and does her paperwork: organizing the rotating schedules of six caregivers, keeping track of medication, filling out the forms for the Medicaid program that helps her cover the care, checking for progress in her protracted effort to have him placed in an assisted-care facility before she is too old. He has been on one waiting list for 15 years.
Also, making chicken salad every other night for his lunch.
As quietly as possible.
Experiences like hers are what have motivated Dr. Hood and others to meet their needs, beginning with the opening of a dental clinic for people with intellectual disability in 2002. The clinic was named after its two strongest proponents: Louise Underwood, a family advocate, and a state legislator, Jimmie Lee, whose support began with visits he had made to state institutions as part of his legislative duties.
“First thing I saw,” Mr. Lee says. “About 70 percent didn’t have any teeth.”
According to Dr. Hood, more than half of those with intellectual disability also have gastroesophageal reflux disease, perhaps as a result of medicinal side effects, or even from living recumbent, in a wheelchair or bed. Many cannot articulate their feelings, leaving the unaddressed issue of acid reflux to eat away at teeth enamel.
The dental clinic became a godsend for hundreds of patients all over Kentucky. Some parents drove several hours — passing who knows how many dentists along the way — to have their adult children receive compassionate and holistic care.
Dr. Hood, 61, a dentist whose head is shaved as if prepared for battle, found his calling nearly two decades ago, after doing a rotation at a state institution. Years later, he approached his stepson, Dr. Holder, shortly after the younger man completed his training as a physician. “There’s a need here,” Dr. Holder remembers his stepfather saying. “You could really have an impact.”
The advice took hold. Today, Dr. Holder, 41, is the president of the American Academy of Developmental Medicine and Dentistry, the global medical adviser to the Special Olympics, and a leader in the burgeoning field of developmental medicine.
Together they pushed forward, working with Mr. Lee to muster the support and funding, while never doubting the need. The deficiencies in health care for people with intellectual disability have been cited by the surgeon general, the American Medical Association and the American Dental Association, among others.
On a more granular level, Dr. Hood and Dr. Holder knew that most doctors are never exposed to patients with intellectual disability, and that government health care benefits for these patients are often reduced after they become adults. The doctors were also aware of a tendency toward “diagnostic overshadowing”; that is, attributing a behavior — repeatedly slapping oneself on the side of the head, for example — to intellectual disability, rather than searching for a root cause.
“Oftentimes there is an underlying physical diagnosis that is actually causing pain or discomfort,” Dr. Holder says. “And because some of our patients have limited verbal abilities, their method of communicating to us is that behavior.”
That head slapping? It could be symptomatic of an ear infection, easily addressed with antibiotics.
Ms. Kramer says that when her son began making himself vomit a few years ago, a doctor determined that he was doing it for a “head rush.” It turned out to be a bleeding ulcer and a hiatal hernia. With a little medication, the vomiting markedly declined.
Finally, after 15 years of planning, the state-licensed clinic opened with a ribbon-cutting ceremony in June that included Gov. Steven L. Beshear. It was named after Mr. Lee, 77, a former car salesman who for 20 years had been the most ardent advocate in the Legislature for people with developmental disability. (He lost his bid for re-election in November.)
The facility cost Kentucky more than $4.7 million to build. Dr. Hood and Dr. Holder have a two-year contract to run the clinic, which will mostly operate on revenue received through billings of Medicare, Medicaid, private insurance and private payments.
In addition to providing training for doctors and dentists, the clinic offers full service to families accustomed to embarking on odysseys in search of health care. It provides behavioral, physical, occupational and speech therapy, as well as medical, dental and psychiatric care, for about 500 patients, though that number is expected to grow. Families can now meet with several specialists at once to develop a health care plan.
Beneath it all, there runs the undercurrent of what Dr. Holder calls a “reversal of nature” reality. Heard time and again from parents of adult patients, it is the sorrowful hope that their son or daughter dies before them, because they cannot imagine who will care for that child once they are gone.
“We solve the problem of health care at this clinic,” Dr. Holder says. “But for the parents, health care is just one piece of their life.”
Moments of Victory
A team receives Mr. Kramer in an expansive room reserved for physical therapy. The bandage on his left hand cannot cover the raw results of constant biting. Taut with resistance, he requires four therapists and aides to lift him from his wheelchair and place him on a mat.
His mother, who is five feet tall and 98 pounds, leans against a wall some 20 feet away, concern defining her face. She worries for the safety of the caregivers as much as for her son.
One of today’s goals is to work on speech — to help Mr. Kramer learn how to convey the everyday emotions of life. Pieces of chocolate-fudge-mint cookies are placed before him as part of a rewards system to broaden his ability to communicate.
“Muh,” he says, and then grunts.
“Another cookie?” a therapist asks. “Trey? Trey? Come back to us.”
Mr. Kramer, though, is not happy. He screams, resists, falls silent, and screams again. He is gently but firmly redirected from biting his wrist.
An aide runs his hand over Mr. Kramer’s dark-brown hair. “It’s O.K., buddy,” another aide says. “We’re just trying to give you some food.”
The work continues. Offers of cookies. Offers of water. Encouragement. Finally, the speech specialist reports progress: “Perfect eye contact. That’s complete communication.”
The aides place Mr. Kramer stomach-down on a balance ball, and a therapist massages his back while others seek his focus. Between the shouts and the silences, there are moments.
A belch that makes everyone laugh. A gesture toward a bottle of water, signaling thirst. A tap to his forehead, signaling pain — possibly a headache. The saying of “Muh” when asked whether he wants a piece of banana.
An end comes to a session exhausting for everyone. Mr. Kramer is carefully placed and strapped in his wheelchair.
“Muh. Muh,” he says.
“There’s my boy,” his mother answers. “There’s my boy.”