Disabled Advocates Rally for Health

wheelchair

Marty Omoto, the creator of the influential California Disability-Senior Community Action Network, has 65,000 subscribers to his e-mail alerts, each of them packed with legislative policy analysis and action plans that he sends out from his Sacramento home sometimes in the middle of the night. Since the 1970s, when Jerry Brown was a first-time governor, Omoto has been organizing his readers to rally to defend statewide health funding and other programs for people with disabilities and seniors. His zeal was sparked decades ago when his family had to resist pressure to place his older sister, who had a developmental disability, into an institution far from home. “Since then, I’ve tried to use my knowledge of government and get it out in an aggressive way,” says Omoto, “We teach people that they have a right to be treated fairly.”

In every corner of California, in living rooms, community centers, and grassroots organizations, disabled activists are determined and organized to fight to preserve health programs and social services that help them and their communities. They are new radicals and decades-long activists, many of them using wheelchairs, or with developmental or other disabilities. They regularly pack hearing rooms and hold rallies in Sacramento with signs directed to state officials: “We count, too.”

More than 3.7 million Californians are disabled, whether from cognitive impairments, physical disabilities, or chronic diseases. A 2012 Disability Status Report, from Cornell University, reported one in ten Californians reported having one or more disability. People with disabilities are enrolled in a complex array of state and federal health care and support services, including Medi-Cal, Medicare, In-Home Supportive Services, Regional Centers for the developmentally disabled, California Children’s Services, and others. More than one million California seniors and disabled persons continue to live below the Federal Poverty Level. There was no increase in the Cost of Living Allowance under Social Security Insurance (SSI) this year and there is a significant threat by some in Congress to decrease SSI income by 20 percent.

These issues can be a challenge to navigate—let alone fight for—without clear guidance. That’s where Cynde Soto comes in. Soto, 58, is a community organizer for the L.A.-based independent living center, Communities Actively Living Independent & Free. She conducts regular SWAT (Systems Watch Advocacy Team) trainings to prepare people to get educated and active.

“We tell them what their civil rights are and how they are a part of a big long history,” says Soto, who was paralyzed due to a spinal cord injury sustained during surgery for another disability. “We have rallies where they plead their case about how the decisions made in Sacramento are affecting their lives and how [lawmakers] can make things better for them.”

The first part of her training is a primer on the landmark federal law, the Americans with Disabilities Act of 1990, which required businesses to make reasonable accommodations for people with disabilities, among many other protections. Soto says another essential part of her training is educating people on how to tell their personal story—and quickly. They are schooled on the basics of public speaking, get tips on how to make legislative visits, dress a certain way, and be on time. Then they visit the local assembly member and later, inevitably, a rally.

“Sometimes, when people are telling their stories, they breakdown and cry because they have an opportunity to tell them how their life is,” she says.

One significant win this summer—something Cynde and thousands of others fought for years for—was the restoration of the 7 percent cut to the hours of In-Home Supportive Services providers. Reducing those hours, cut during the recession, put the health and living standards of people with disabilities in jeopardy, advocates say. For some people, it meant that they would have to do without a third prepared meal during the day, or that they had no helper to shop for food for them; others weren’t able to be turned and re-positioned in bed as often as needed, or they couldn’t receive their medicines on schedule. The legislature and Governor Brown’s actions to restore those hours “was a significant morale booster,” says Soto.

Wins give them ammunition for the many other battles they are continually waging in Sacramento, particularly over Medi-Cal. Before the state moved Medi-Cal patients into managed care, people with disabilities had the freedom to choose their own doctors. Now, they’re obligated to move into a system where their plan offers up a restricted pool of physicians to choose from. Many report that they have had to give up their long-time specialists, and then when they find a new one, they aren’t able to see them in a timely manner.

Anthony Cava, a spokesman for the California Department of Health Care Services, wrote in an e-mail that the Medi-Cal managed care plans ensure that beneficiaries receive care from appropriate specialists in a number of ways. They contract with providers that specialize or are certified in care for a certain diagnosis, have plan care coordinators and maintain databases with provider expertise information. They also have avenues for assistance, including an ombudsman if patients have concerns about their care. Supporters of managed care say the system helps improve cost and increases the continuity of care.

One positive sign was a July 2 Senate Public Health and Developmental Services Committee hearing “Shoring up Public Health Care and Developmental Services Financing” where there was testimony encouraging an increase in provider reimbursement rates under Medi-Cal, which could entice more specialists into the pool. Still other disability rights battles have been lost this summer. Activists sought a restoration of funding for the 21 Regional Centers across the state, which are social service providers for people with developmental disabilities. During the recession, Governor Brown authorized a 10 percent cut in funding for Regional Centers; an effort to restore 5 percent of that this year was rebuffed.

Randi Bardeaux, who lives in Antelope Valley, has multiple sclerosis, and has been a grassroots advocate for 20 years, said vigilance is necessary. The possibility of losing IHHS provider hours again, a year from now, means that more seniors and disabled individuals will be at risk of jeopardizing their health and being institutionalized, she says.

Teddie-Joy Remhild, 82, who is blind and a has been a leading advocate for 35 years for equal access and equal rights, counsels people that progress is always incremental.

“It’s one little step at a time. You fight, and you take one step and you fight, and another little step,” she says. “The main important component of advocacy is showing up.”

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