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OAKLAND – Advocates of better access to health care for people with disabilities gathered Friday to share ideas for reform amidst grim stories of illness aggravated by bureaucracy. 

State Assemblymember Dion Aroner, D-Berkeley, who presided over the forum at the Elihu Harris State Building, said in opening comments that the events of Sept. 11 “make us all sit back and think a bit about what kind of services we provide for people who are vulnerable.” 

Several participants presented case studies on people with disabilities who have endured needless and health-threatening delays and denials of service far worse than non-disabled patients confront. As reasons for this disparity, they cited poor understanding of disability issues by health-care providers and a lack of communication among multiple layers of government and health-care agencies. 

Participant Rosalee Schubert told of a financially well-off female wheelchair user who did not have a pap smear until she was 48 years old because doctors disregarded her body below her waistline. She died, Schubert said, of uterine cancer. 

“The attitude of health-care providers – not seeing them in their wholeness rather than as just a disability – is a critical problem,” said Rocio Smith, executive director of the Area 5 (Alameda County) Developmental Disabilities Council. 

In another example of disabled people falling between the cracks, Schubert offered a case study of a young man with a terrifying case of schizophrenia who was released to his solitary apartment on Tuesday, Sept. 11 – right after his second suicide attempt, with footage from the east coast attacks spilling from the television. Those with mental health disabilities, she said, sometimes suffer because mental health professionals “view developmentally disabled people as having a rich service system and not being truly needy.”  

Steve Zolno, who said he ran nine facilities housing people with developmental disabilities – chronic conditions that arise early in life and severely inhibit independence – told of a patient who needed anesthesia to undergo even minor dental work. The dental insurer refused coverage for anesthesia, Medi-Cal refused to fund the dental work, and painful months elapsed before the work took place. 

Snafus like these over dental work, Zolno and others said, were so common that care facilities had huge incentives to simply pull all their patients’ teeth, and regularly did so. 

“The stories are all the same,” said Aroner. “You don’t even have to be on Medi-Cal; you can be in an HMO and they say, ‘You have a bad tooth, let’s just pull it.’” It needs to be highlighted, and we need to deal with it.” 

Stories of bureaucratic snafus abounded. Roswitha Robinson, a parent and head of the Health Care Task Force of the Alameda County Developmental Disabilities Council, which convened the forum, said months of out-of-pocket expenses resulted from the loss of her developmentally disabled daughter’s membership card in a health maintenance organization contracting to Medicare. Robinson said she found herself bounced among the Social Security Administration, the HMO, and the county social service department for months. 

“When you call these offices,” she said, “people are very accommodating, but you get the answers with such finality: ‘Sorry, you’re not eligible.’” 

Melissa Rodgers, a staff attorney with the Legal Aid Society of San Mateo County, offered advice on how and why to start a community watchdog agency for health care. She said she had dealt with disabled patients’ lack of access to prostheses and to specialists, unfair denials of service, improper billing by providers and pharmacies, and other problems. 

“Our priority is to resolve the issues at the lowest level of conflict and adversarialness possible,” she said. Independent advocates were more likely to be effective than ones based in the health plans, governments, or public health agencies themselves, she said. 

Sherri Novick, chief of staff to Aroner, noted that the federal government had set up a pilot program of county-based health consumer advocacy organizations several years ago, but some had voiced concerns about confining that function to government. 

In an overview of the crisis, Barbara Garcia, a disabled patients’ advocate, reported that people with disabilities logged twice as many customer service complaints as people without, and three times as many service denials. 

The forum’s suggestions to improve the situation ranged from the creation of advocacy offices and changes in existing agency procedures to wholesale reform of the health-care system on civil-rights grounds. 

“For me,” said Vanessa White, who spoke from the audience, “the issue of access is a civil rights issue and it affects everyone.” 

On the bureaucracy front, participants recommended creating an early-payment system for people with disabilities to smooth out potentially devastating delays and using the Internet for patient information among the various agencies. Aroner welcomed a suggestion that case managers be appointed to supervise individuals’ care across disconnected agencies. 

“We have state agencies that haven’t talked to each other for 25 years and have no intention of doing so,” she said, “so how can they provide leadership on the local level?” 

To increase understanding of the special needs of those with disabilities, speakers advocated outreach to nurses and doctors in their workplaces and education for caseworkers on conservators’ rights in order to keep important decisions in the hands of developmentally disabled people’s loved ones. Rodgers drew applause with the recommendation that the state legislate “to give people enforceable rights and the means to enforce them.” 

The forum organizers will compile their results and present them at another gathering scheduled for Feb. 6 at the same place. Aroner said she would draw from the results of both to recommend legislation in Sacramento.