A new report from AARP captures the changes coming for people who depend on Medicaid for services that help them live with chronic illnesses and disabilities. The number of states that actively manage long-term services and supports in Medicaid will nearly double by 2013, from 12 to 23, with many states folding in services previously only offered through special arrangements with the federal government, called waivers. Long-term services and supports include everything from nursing home care to community-based supports such as help with chores, personal care, transportation, and maintaining a home.

Will this mean more seniors and people with disabilities get the services they need to live in the community and better coordination of those services with medical care? Or will it destroy the fragile network of supports and community-based organizations that millions of often vulnerable people rely on for their everyday needs?

AARP is sponsoring a webinar tomorrow on their report, which is the latest of a string of papers on the transformation of Medicaid-supported long-term services and supports.

The reason for this boom in managed care is no surprise if you look at the numbers: More than one-third of Medicaid spending is for long-term supports and services. But only 6 percent of that is delivered through capitated managed care where plans are paid a fixed sum to provide services. Demand is rising for these services as the population ages, and the lingering recession makes more people eligible for Medicaid to pay for them. Facing fiscal crises, more states are turning to managed care – and making participation mandatory – in the hope of controlling spending. States are also looking to shift more long-term care from nursing homes into the community, largely in response to consumer demand. And the federal government is offering incentives and flexibility to states that make one or both of these moves.

But only a dozen states and relatively few managed care companies have experience with Medicaid managed long-term services and supports. There is little evidence on whether managing long-term services improves outcomes or cuts costs, which may in part be because many of the states are managing these services in a vacuum, separate from medical services, according to a report last fall from the Kaiser Family Foundation. Adding to the challenge, AARP reports that many states have gutted their staffs who work on aging and disability issues.

Meanwhile, the biggest users of these services in Medicaid are low-income seniors and people with severe disabilities who also qualify for Medicare, often referred to as “dual eligibles.” Making things even more complicated, three-quarters of the states are pursuing separate, but related initiatives to integrate all care for these folks, from hospital and doctor’s visits to long-term services, and many plan to actively manage that care.

If there ever was a time for consumer watchdogs to start barking, this is it.

Getting it right will take time, but states are rushing forward. Making it robust will require trained home care workers, but there is a shortage. Making it responsive to consumer needs will take listening to consumers and leaning on the community-based agencies that know this stuff cold, but the for-profit national companies are moving in.

Advocates would do well to focus on these 10 questions:

  1. Are consumers, and consumer advocates, actively involved in planning the changes?
  2. Will services be patient-centered and consumer-directed whenever possible?
  3. Will consumers have as much choice as possible – of participating, of plans, of providers?
  4. Will a full range of services be available, without bias toward nursing home care, and without medicalizing what are primarily social services?
  5. Will long-term services and supports be integrated with medical and behavioral health services, with the right services offered in the right setting at the right time?
  6. Will community-based organizations, such as Independent Living Centers, Recovery Learning Communities, Aging Services Agencies, and Aging and Disability Resource Centers have the opportunity to be providers, or even managed care organizations?
  7. Will there be a single point of entry for consumers to obtain long-term services and supports?
  8. Will there be continuity of care for consumers with long-standing relationships with specific providers?
  9. Is the emphasis on improving quality of care as strong as the emphasis on cutting costs?
  10. Will the state exercise strong oversight over managed care plans?

There are some small programs across the country that can serve as examples, as well as aspects of state managed LTSS plans that are particularly responsive to consumers or creative in serving their needs effectively and efficiently. Some are described in the Kaiser report, some in a State Long-Term Services and Supports Scorecard published by AARP last September, and some in a “Roadmap”put out by the Center for Health Care Strategies in 2010. Watch for additional resources on best practices from Community Catalyst in the coming months as well.

— Alice Dembner, project director