Parents Spearhead a Clinic for Special Needs Children and Adults
Ethel Burgos is sitting with her husband Joel and their autistic son Jericho on comfy couches in the consultation room of the Achievable Clinic, a West Los Angeles health center that serves people with developmental disabilities. The 13-year-old, who has a mental age of three, bounds up off the couch and his father gently coaxes him down as he talks casually with the plain-clothed doctor about Jericho’s upcoming immunizations.
“This clinic is a relief because the staff here understands his condition,” says Burgos. “Sometimes he will be aggressive, and push, pinch, or have tantrums, and the regular pediatrician didn’t understand. Now that I have somebody on my side that can help me out and I can get the services I need for him.”
Creating a welcoming medical home for adults and children with developmental disabilities is what compelled Alicia Bazzano and her husband — both pediatricians, and parents to a special needs child — to co-found the clinic two years ago. It is believed to be the only one of its kind in the state. Bazzano, who also has a Ph.D. in public health, says people with developmental disabilities (which includes autism, mental retardation, epilepsy, and cerebral palsy) are at a disadvantage on many fronts.
Most of them are on Medi-Cal or Medicare and many are unable to find doctors near them who take their insurance. They may have difficulty getting to an appointment because the doctor’s office is not easily accessible on public transportation. Even if they do work, they tend to have a lower income and may not be able to afford the specialty care their primary care doctor prescribes. Frequently, as with the Burgos family, the barrier is with the health care providers themselves, who is unwilling or untrained to work with clients with special needs.
“There are 280,000 people in California who are either invisible or in a big box separated from everybody else,” says Bazzano. “The health care system is not working well for people with developmental disabilities and we decided we’d do something about it.”
A 2011 study illustrates the health disparities well. The report by the Research and Training Center on Independent Living at the University of Kansas in Lawrence, found that people with physical disabilities or cognitive limitations are more likely to have seven chronic diseases than people with no disabilities. Those include cardiac disease, diabetes, asthma, high blood pressure, and high cholesterol, as well as a higher association with stroke and arthritis.
That study, published in the Disability and Health Journal, also found that people with cognitive limitations, in particular, were the least likely to participate in preventive care services. They tended to have fewer on-time preventive screenings for Pap test, mammograms, and dental problems than those with physical disabilities. Advocates for the disabled say these results demonstrate the need to rethink how services are delivered or what types of services are offered, including considering environmental access.
It took Bazzano and a tight-knit group of Los Angeles parents of disabled children several years to make the Achievable Clinic a reality. The idea of establishing a community health center first began to percolate among parents who brought their children to the state-funded Westside Regional Center in Culver City, established by the state’s Department of Developmental Services (DDS). One of 21 in regional centers in California, the WRC serves as an assistance hub of sorts for people with disabilities. The center’s case workers, like lifetime life coaches, help adults improve daily living skills, find and succeed at a job, learn how to share an apartment with a roommate as well as shop, cook, budget, and clean.
The WRC does have a small medical team—Bazzano is also on it—but it only offers consultations, and referrals to specialists in the community. Regional centers were created as a social support, not a primary deliverer of medical services.
The group turned to the nearest source of funds for support—the nonprofit Achievable Foundation, funded by wealthy West L.A. donors and other charities, which provides services, such as housing assistance, computers, glasses, and dental care, to more than 7,000 people with disabilities in L.A. Opening a health center would be a costly new venture for the foundation. Mike Danneker, director of the WRC, said: “It was tricky, because no one has a half a million dollars in their bottom drawer sitting around.”
With M.D.s and Ph.D.s as grant writers, though, they soon pulled in some cash—from the Keck Foundation, the federal Health Resources and Services Administration, Blue Shield Foundation and others. And then, conveniently, office space opened up upstairs from the WRC so clients who’d made the trip to meet with their caseworker could just head one floor up to the clinic for an appointment.
Now with a $1.2 million annual budget, the clinic employs a staff of two full-time pediatricians, two family physicians, and a neurologist and psychiatrist, both part-time. The clinic very quickly became a Federally Qualified Health Center—a coveted certification that brings a $650,000 annual federal grant and higher reimbursement rates from Medi-Cal. Last year, the clinic served 526 patients, with generous appointment times of an hour of more. The cofounders felt it was critical to also invest in designing the health center, located in a Culver City office park, to be accessible to every patient and family member coming through the door.
In the waiting room, there are visual, auditory and tactile features installed to accommodate patients who have differences in processing and responding to sensory input. The couches are low enough so people using wheelchairs can transfer onto them with ease; a kids’ section has “sensory boards” with colorful beads, and the room has seamless floors to prevent falls. In an exam room, there’s an electric lift that moves disabled patients from their wheelchairs onto the adjustable exam table—and it takes their weight en route.
Liz Spencer, the Director of the Family Resource Center at the WRC, who routinely refers clients upstairs to the clinic for care, said she wishes it had been there for her son when he was little. Jason, now 26, has Downs Syndrome and suffered from heart problems, bouts of pneumonia, and hearing loss in his early childhood years.
“At one point, we were followed by three teams of doctors and he developed an incredible fear,” Spencer says. “He would start screaming when we pulled into the parking lot and saw the white coats.”
Annie Jeng, another Achievable Clinic pediatrician who had worked at hospitals including Cedars Sinai Medical Center, doesn’t wear a white coat anymore. And she does more than treat patients’ medical needs. Sam is a good example. The developmentally disabled 3-year-old boy had been acting aggressive in a sexual way towards adults. His foster mother wanted to put him on medication to control his behavior. After discovering that the child’s strange behavior escalated after he was with his biological mother, Jeng asked the courts to suspend the boy’s visits with her, and later the disturbing behavior improved.
Joel Burgos, Jericho’s father, says that kind of intervention outside of the realm of medical care is typical. The doctors have helped him answer questions from school officials about his son’s behavior. They’ve set up behavioral therapy sessions and helped process health insurance claims. The doctors sometimes even do evaluations in the parking lot of the clinic if the patient is reluctant to get out of their car and come inside.
“They go above and beyond,” he says.