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Family Care History: What's wrong with our current long-term care system?

Many things about our current long-term care system are right and are working just fine. Our Community Options Program (COP) is a national model for flexible home and community supports and services. Supplemented by our federal Medicaid waivers for home and community-based care, we have built a strong program that is popular and cost-effective. Our nursing homes are among the best in the nation, and we have high quality providers of all kinds throughout the system. We have a network of skilled county case managers with long experience in working with elderly people and people with disabilities to build individualized plans of support.

However, several years of intensive study have pointed up some serious flaws with the way we organize and deliver long-term care in Wisconsin. People with disabilities and, in particular, older people and their families tell us that the system often doesn’t make good sense and doesn’t work for them. And analysis shows that we could be far more efficient with our resources, serving more people for the same amount of money.

It’s not dependable

  • Over 10,800 people were on waiting lists for the Community Options Program (COP) as of January 1999. Whether someone can access home and community care depends on where they live and when they happen to need it.

  • Access, choice and quality in COP are not consistent from county to county. Waiting times vary from days to many years depending on the county and the person’s age or disability. Very similar people get very different levels of support from one county to another.

  • People who move across county lines may find that they have lost access to services or have to go to the bottom of the waiting list all over again.

  • When counties receive a fixed allocation for COP and are faced with waiting lists, the incentive is to serve more people who cost less. There are disincentives to serving people with the most expensive needs.

  • People who spend down their own resources in a community residential facility may find that public funding is not available under any existing program. They will then have no choice but to leave what has become their home and move to a nursing home, usually at greater public cost.

It costs too much

  • Wisconsin spends 50% more than the national average for each Medicaid-eligible elderly person.

  • Our system entitles eligible people to nursing home care and other medically oriented services, but not to less expensive, less formal and usually preferred home and community supports. The institutional bias of the system sometimes forces people to choose between a nursing home and a waiting list for home and community care.

  • Wisconsin uses nursing homes at a rate 45% over the national average. Buying nursing home care means buying a whole package of services, even if someone has a home that’s paid for and a family and friends who could provide much of his or her care.

  • We currently spend $1.5 billion on long-term care—about 8% of the total state budget.

  • Of the $787 million spent on long-term care for the elderly in 1997, 87% was under the Medicaid fee-for-service system. Of that, 96% was for nursing homes.

  • By 2040, Wisconsin’s over 65 population will double and the over 85 group will triple. Available resources will not sustain the long-term care system unless we become more efficient.

It’s not responsive to individual needs

  • To be eligible for long-term care services paid for by Medicaid, you have to become impoverished. It’s an all or nothing program designed for those with very few resources.

  • By far the biggest public program funding long-term care is Medicaid, which is largely organized around service types, not individuals.

  • People of working age who want to work find that they must give up access to public health and long-term care coverage and can’t get private insurance. If they can get insurance, it usually doesn’t cover the kinds of long-term care supports they need. Facing these barriers, many stay unemployed.

  • People who rely on Medicaid card services have little access to assistance with locating and managing care, while those in COP aren’t always able to manage their own services when they are able and willing to do so.

It’s too complicated

  • The system is confusing and intimidating. Especially when a sudden need arises, people don’t know where to turn for help.

  • The system of public programs is so fragmented that at least 40 public programs provide funding for long-term care, each with a different set of eligibility criteria and covered services. It’s hard to patch together the right kinds of supports for the right person, and easy for someone to fall through the cracks.

  • Those who can pay privately find it very hard to find out about and arrange the right services. Often they pay more than they need to, because they don’t know about less expensive options. When this happens, they lose their independence and have to rely on the public system sooner than might have been necessary.

  • Most often, people get advice from providers of particular services and don’t find out about the full range of options that might be available to meet their needs.

Accountability is too fragmented

  • Counties managed only 13% of the state’s expenditures on elderly long-term care services in 1997. Management tools, such as limits on service and special authorizations, are too often at the state level, rather than close to consumers.

  • Quality assurance is too often focused on process, not on outcomes. We pay providers based on how many units of service are delivered, not on how well people do.

  • Responsibility and authority for the evaluation, delivery and payment of long-term care services is fragmented—resulting in inconsistency, sometimes-conflicting rules, and incentives for cost shifting.

  • Counties are mandated to manage certain programs and provide certain services whether or not they are willing and able to do so—and whether or not state and federal funding keep pace with needs.

Last Revised:  April 23, 2014