An Oasis of Care for People With Intellectual Disabilities

NY Times   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. [...]

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.”