November 30, 2007
CONSTRUCTING CARE
It was a great start to an important conversation: More than fifty consumers, providers, advocates and activists packed the conference room at the Federation of Protestant Welfare Agencies on Park Avenue South Thursday afternoon for a two-hour forum on HIV, managed care, and prospects for change and reform in New York's Medicaid system.
Health department officials and many in the AIDS community are concerned about the high numbers of HIV-positive people on Medicaid who aren't getting high-quality care and are suffering avoidable illnesses and deaths as a result. And there's pressure on New York's biggest-in-the-nation Medicaid program to make sure money is spent wisely and well.
Reform efforts that prioritize preventive care, care coordination and intensive oversight to ensure provider compliance with contemporary standards of HIV care are needed to boost health, save lives and save money. Top Spitzer administration officials have invited the HIV community to discuss options and collaborate on solutions. But the shape of needed reforms is up for grabs—that's where community education, mobilization and advocacy come in.
"I'm concerned about my clients," one front-line case manager told the crowd. "They're very vulnerable, they're homeless, they have very low literacy or are illiterate. They need explanations, information, and help; they don't need more barriers, and I don't think they would do well with a regular HMO."
Concern over mandatory enrollment into Medicaid HMOs—one, but by no means the only option on the table—was widespread among the crowd. Michael Kink from Housing Works recapped HIV/managed care history from the mid-90s, when the Giuliani and Pataki administrations tried to mandate the enrollment of 25,000 HIV-positive Medicaid beneficiaries into HMOs.
"The Housing Works Women's Advocacy Group surveyed all the HMOs and found that 95 percent could not refer callers to a primary care doctor with experience treating HIV," Kink said. "The vast majority of doctors hadn't treated HIV, and didn't want to take new patients with HIV or AIDS. Federal officials were very concerned , and the mandatory initiatives were blocked. And we won important protections in state law to make sure it wouldn't happen again."
"We need to know what's happening in 2007 with HIV care in mainstream plans before we can push tens of thousands of people into them. Now I think the Spitzer folks are in a much better place on this than the Pataki and Giuliani people were: They know HIV, and they care about people with AIDS," Kink said. "They want to work with us, and we want to work with them. But it's up to us as advocates to hold their feet to the fire and make sure they do the right thing."
Another bad managed care model to avoid: the 2005 transition to mandatory managed care for many adults and children with disabilities receiving SSI benefits. Attorneys Diane Spicer and Lisa Sbrana from The Legal Aid Society talked about the poor planning, inadequate network capacity, lack of education and outreach, and benefits coordination problems that have plagued the initiative.
"We're talking about seriously disabled kids who got services on the 30th and were told when their Medicaid cards were swiped on the 1st that they were in managed care and couldn't be seen," Sbrana said. "Their parents were completely shocked. Their providers had no idea what to do. And the kids needed lots of care, every day."
Spicer said the AIDS community should feel positive about the fact that it'll have the opportunity and the input to help design systems of care before they're imposed by fiat. And she urged advocates to utilize strong protections in current law to make sure things turn out right: "You've got real opportunities and real strengths we didn't have with the 'SSI mandatory' program. These are exactly the conversations with the state, with providers, and with managed care plans that needed to happen but didn't."
Shirlene Cooper, co-director of the New York City AIDS Housing Network, has been living with AIDS and dealing with the threat of Medicaid HMOs for more than a decade. "I'm concerned, frankly," she told the crowd. "I don't want to give up my rights. I don't want to be forced into a plan. In the nineties I was getting directly-observed therapy for tuberculosis, I was seeing an oncologist for cancers, I was seeing an HIV specialist for AIDS. Those HMOs had no idea what to do with me."
Cooper and NYAC's Matt Lesieur helped lead the crowd through a vigorous open discussion of issues and concerns, including disruption of existing care relationships, adequacy of network capacity in managed care plan, barriers to care, and financing and oversight to ensure quality and good health outcomes.
Included in the conversation: Top officials from all three HIV Special Needs Plans, the specialized HIV HMOs that have served as an experiment in providing good HIV care with experienced providers in a managed care setting. SNP execs talked about their devotion to HIV care, their commitment to maintaining existing provider relationships for their clients, and about the modest, steady growth their plans have seen in the voluntary-enrollment environment.
"But Medicaid reform—on the federal level, on the state level—is going to mean real changes," said Eli Camhi of SelectHealth. "I was the director of the AIDS program at Montefiore Hospital for many years, and I left to help start the SNPS because we could see that outpatient care and managed care were the future of HIV care. We've got to find a way to maintain this balance of specialized HIV care, non-profit CBOs and mainstream plans, or we're going to be faced with a future that's only mainstream HMOs."
Many attendees expressed their fear that widespread managed care could destroy the community-based groups providing essential case management and care coordination services. SNP execs talked about how they work with COBRA case management programs (currently carved out of managed care funding) to stabilize patients and coordinate client care). The subtlety of these relationships could be threatened by cookie-cutter mainstream plans, according to Jan Zimmerman of VillageCare. "These are very valuable relationships," she told the crowd. "These are essential providers and essential services. We can't afford to lose them."
Program conveners Coco Jervis of GMHC and Esther Lok of FPWA agreed that Thursday's forum would be the first of a series of community conversations, and that constructive engagement with State officials would be integrated with more community education and mobilization. To get involved in the conversation, get a detailed transcript of Thursday's session, or to be notified of future forums, e-mail Coco Jervis at corneliaj@gmhc.org.