Yvette Baptiste’s son Andrew was born with Klippel-Feil syndrome, a bone disorder where the neck vertebrae are fused, causing pain and limiting movement.
But even though Baptiste, as the Executive Director of Eastern Los Angeles Family Resource Center, was a seasoned health advocate, it still took more than a year to find a new doctor to treat her adult son.
“When he turned 19, he needed treatment for scoliosis and we tried to find a doctor who knew anything about his condition,” Baptiste says. “Only physicians who have had a round of pediatrics know anything about it. If you have a special medical issue, it can be impossible to find an adult provider.”
Her struggle is one that people with cognitive and physical disabilities and their families confront every day across California. Adults and children with disabilities—approximately 4.5 million statewide— are heavy users of the health care system.
With conditions such as spina bifida, cerebral palsy, cystic fibrosis, and cognitive impairments including autism, they depend on an array of health care providers, institutions and service programs to achieve good care.
Yet, according to kidsdata.org, a database of statistics run by the Lucile Packard Foundation for Children’s Health,* one third of children with special health needs receive inadequate services compared with one quarter of children without them.
The same goes for adults with disabilities—they are significantly less likely to see a doctor, particularly for breast cancer screenings and dental care, and as a result more likely to report being in fair or poor health than adults without disabilities, according to a 2004 study published in the journal Public Health Reports.
Advocates say policy changes will likely make these disparities worse. The state has moved millions of adults with disabilities into the Medi-Cal managed care system, which has one of the lowest payment rates in the country for Medicaid doctors and a shrinking pool of providers.
The state’s California Children’s Services program—a treasured source of pediatric inpatient and outpatient care for serious chronic and acute conditions—is ending this year and there is legislative debate about how to redesign or save it.
Rural and Urban Barriers
On top of these challenges, whether people with disabilities live in urban and rural areas can create different barriers to timely care.
People in far-flung rural corners of the state, for example, may have miles and resources between them and their doctors. Many travel hundreds of miles to meet with specialists.
In some urban areas, a doctor’s high caseload can mean long wait times for appointments, and sometimes employees at state-run service centers for the disabled are ill-equipped to help them navigate the complex array of state and federal health insurance provider networks.
Because finding timely and appropriate care can be a life and death proposition, especially for the medically fragile, disabled people and their families across California have had to educate themselves. Their desperation has emboldened them to become advocates.
“There is a tremendous burden and pressure on families,” says Pip Marks, Manager of the San Francisco-based Family Voices of California, “because the weight of care-coordination for their children’s health care falls heavily on them.”
Ginger MacGowan says she has no other option. She lives in rural Etna, Calif. with a population of 700 that’s situated about 30 miles from the city of Eureka. Her 8-year-old daughter Chelsea has Shprintzen-Goldberg syndrome, a rare connective tissue disorder that makes her neck unstable. She also suffers from a heart condition. With no pediatric specialists nearby, she drives two and a half hours one way to Redding for orthopedist and ophthalmologist appointments. To see Chelsea’s neurosurgeon, audiologist, cardiologist, and spine specialist, she travels to UC Davis, which is “5 hours one way on a good day with no weather.”
“Last month, she had 45 doctor and therapy appointments,” says MacGowan. “It gets hard. It’s exhausting.”
Wendy Longwell spends most of her day trying to help people like MacGowan. She is a Parent Consultant with Rowell Family Empowerment, a center based in Shasta County that serves about 3,000 families in 26 counties from the Oregon border to Sacramento and from the coast east to Nevada. Sometimes she says even when parents reach a specialist, they may have little to offer.
Longwell says she hears stories again and again that doctors may be ill-equipped to treat patients with physical or cognitive disabilities or rare conditions. For instance, she says, an adult neurosurgeon, who is more accustomed to performing brain surgery on adults, may have never seen a child who has spina bifida suffering from blockages in their shunt. A dentist might not know how to proceed with a cleaning, say, if a disabled patient has a swallowing problem or a locking jaw.
Even when people with disabilities live in a city or an urban area and are relatively close to knowledgeable specialists, the challenge to scheduling an appointment can be daunting, says Emelyn LaCayo, a nurse who lives in the Bay Area city of Hayward and has a daughter with a fatal illness that causes profound developmental delays.
“Sometimes a person uses a wheelchair and can’t get a ride,” LaCayo says. “In San Francisco, public transportation is dangerous especially for people with weak immune systems.”
Baptiste, the East Los Angeles family advocate, says apathy among advocates for the disabled is another problem she’s witnessed in highly populated cities where social services are in high demand.
She takes aim at some of the city’s regional centers, set up by the state to offer a range of social services for people with disabilities such as in-home health care and case managers that refer clients for medical care in the community. While many regional centers provide admirable care, she says, “There are a lot of people in the system that are burnt out. They aren’t innovative or take joy in getting people what they want—what they say is ‘this is what we have.’”
Those logistical and delivery service hurdles are compounded by worry about the health system changes currently being debated in Sacramento. Established in the 1920s in response to the polio epidemic, CCS has evolved to provide doctor visits, pays for hospital stays, surgery, physical and occupational therapy, tests, X-rays, medical equipment, and medical supplies and to make referrals for children suffering from conditions including infectious diseases, cancers, or blood or nervous system disorders.
Supporters say it’s based on a protocol that prolongs lives. An often-quoted study shows that facilitating access to specialists and sub-specialists (“tertiary care”) has been highly effective. A 1995 study found that children with cancer who were treated at regional pediatric tertiary centers had a 93 percent survival rate, while children treated outside of pediatric tertiary centers had a survival rate of 52 percent, according to the Journal of Medical and Pediatric Oncology.
Anthony Cava, an information officer for the California Department of Health Care Services, said in a statement that he couldn’t comment on pending legislation, but that “DHCS is in the planning stages of an effort to improve access to health care for children and youth with special health care needs through changes to the CCS program and to improve service delivery within the current health care system.” The goals of this redesign, Cava wrote, are to improve care and health outcomes by enhancing the coordination of care, and measuring, evaluating, and continuously improving the quality of the care these children and their families receive.
He added that Medi-Cal managed care health plans are required to provide all “medically necessary covered services” to beneficiaries and also to coordinate with CCS. “If a family is dissatisfied with the care they are receiving, we recommend that they contact their managed care plan to discuss what other care options may be available,” he wrote.
But Cava also emphasized that DCHS can be a resource, too. Dissatisfied parents like McGowan, Baptiste, and LaCayo or adults with special needs can contact the DCHS department, which he says “may step in to assist counties or families if issues of program eligibility or access to care arise.”
*The Lucile Packard Foundation is a sponsor of the California Health Report.