Family Care History - Summary of Questions and Answers from Consumer Forums

Summary Developed in September 1998

Nine consumer forums were convened between May and August 1998, to discuss the Department of Health and Family Services draft proposal of the Long Term Care Redesign effort. The forums were attended by more than 2,000 consumers around the state. Held in Milwaukee, Madison, Green Bay, Eau Claire, Racine, La Crosse, Superior, Wausau, and Dodgeville, these forums were part of an ongoing effort to educate consumers and citizens about proposed changes in Wisconsin’s provision of long term care and support, answer their questions, and obtain their input and suggestions. The final draft of the Department’s LTC Redesign proposal, dated July 31, 1998, contains many clarifications and additions as the result of consumer input.

The basic attitude of people at the forums was enthusiasm about the proposal. At every forum, there was a strong appreciation of the fact that representatives of the State Department of Health and Family Services came out to explain Family Care. Many shared that this was the first time they had understood what was being attempted.

The main things asked for were a simplified system with good information available to more people – one stop shopping – and the continuation and expansion of the choice, consumer control and flexible funding of the Community Options Program (COP). The following are examples of some of the most frequently asked questions and the responses that were given by Donna McDowell, Beverly Doherty, Julie Kudick, Dan Johnson, and the other Department members attending the forums.

Many questions centered on COP – whether it will continue to be available, and whether the most liked features will change in the new system. The following are consolidations of the questions most frequently asked at the forums.

Q: Is COP being eliminated?
A: No. Many of the values and approaches that made COP successful are being expanded to improve the entire LTC system, including nursing home, CBRF, and Medical Assistance long term care services.
First, people will go to an Aging and Disability Resource Center (RC) for information and assistance. People who are eligible will be able to sign up with the Care Management Organization (CMO) and get flexible services now available only from COP plus enhanced services provided under the Medicaid state plan such as therapy.

Q: In what areas will choice be possible?
A: The opportunities for consumers to make choices and exercise control over their support arrangements will actually increase.
First of all, people will be able to choose whether they want to participate in the Long Term Care program through a Care Management Organization or stay with the current Medicaid fee for service system. If they choose the CMO, they will have a free choice of providers of their personal care. They will be free to recruit family members, friends, neighbors, and other informal supports and will have the option of training and supervising their providers. The option for people to direct and manage their entire support arrangement will also be available with as much or as little assistance provided by the CMO as each individual wants or needs, again within cost parameters set by the CMO. Each CMO will make available an assortment of other types of providers, such as home health agencies, day care providers, adult family homes, CBRFs, and nursing homes. Contracts will be negotiated with individual providers that meet established standards and provide quality services and cost-effective rates. Not all providers will be available to participants in Family Care. A consumer who wants a provider not under contract with a CMO will have the option of not signing up for the CMO, petitioning the CMO to contract with the provider of choice, or appealing to the state. Independent advocacy will be available to assist consumers in negotiating with the CMO. The consumer representatives on the councils (51%) and boards (25%) will be able to influence decisions on the providers selected by the CMO. The entire care plan must be customer centered and based on each individual’s choices and strengths as well as needs.

Q: Will funding be flexible as it is in COP?
A: Yes. The funding in the entire system and for each individual participant will actually be more flexible than it is now.
Many separate programs and funding streams, with different eligibility criteria and rules, will be combined. There will be no waiting lists for services for people at the comprehensive care level. A monthly payment adjusted for the level of disability will go from the state to the CMO. The CMO will pay for home care or other individualized residential or nursing home care plans, based on the person’s needs and preferences. The funding will follow if the individual moves including a move to another county. There will be no individual cost caps, but CMOs will have to manage resources to keep average costs within the level of the budget. The individual’s comprehensive assessment and care plan will be the basis for determining what the CMO will pay for.

Q: Will an individual be able to get increased funding or move quickly from one funding level to another if major changes take place before an annual review?
A: Supports and services will be individualized and increase or decrease as people’s needs and circumstances change.
The amount of money spent on the individuals within a particular level will fluctuate, increase and decrease. The state will be able to change the monthly payment level between annual reviews as well, if a person’s condition changes dramatically despite the provision of optimum care.

Q: Will eligibility be restricted?
A: Eligibility will actually be expanded.
There can be no waiting lists for people at the comprehensive (higher) level of care. Entitlement to services will be based on functional ability and medical need – not on income. People will not have to spend down or deplete their resources to get services, but those above the SSI income level will usually have to pay a share of the cost for services depending on their individual situation determined on a sliding fee scale. People who are now financially eligible for Medicaid will continue to be eligible. People with higher assets and income will be eligible to participate as well with a cost share. The CMOs will be required to offer case management services to private pay people as well.

Q: How will there be enough funds for everyone at the comprehensive level of need?
A: We are already spending more per person for long term care than almost any other state.
By giving people "the right stuff" at the right time in the right place, we can make the system more cost-effective. With a simpler more flexible system we can reduce spending on higher cost services and settings, which can be replaced with more effective, less costly alternatives. Currently, many do not have the choice of home and community services that keep people connected to informal supports and make their homes accessible. Community services have long waiting lists, and Medicaid only guarantees availability of nursing home benefits, even if lower cost options would be better for a person. We are sure we will free up enough revenue for people now on the waiting lists. We are not sure how much we will have for people at the intermediate (lower) level of care or how many people that will be. Only people who are Medicaid eligible will be assured of the intermediate level services. Supporting people as early as possible will keep them stable longer, preserve their own resources, and postpone or prevent the most expensive alternatives, so there are strong incentives to provide preventive services to as many as possible to save money in the long run. Resources to fund the increased need due to demographic growth and inflation will need to be provided in the future. However we must assure the federal government and our legislature that the amount we spend is not more than we would have spent without redesign. The Department of Health and Family Services has prepared a cost model to estimate the cost of Long Term Care Redesign that has been presented to stakeholder representatives.

Q: Isn’'t the real goal of this effort, as in HMOs and managed care, to cut costs? Will there be disincentives to serving the most disabled people or incentives to select the healthiest applicants and cheapest providers?
A: Wisconsin needs to control the growth in public spending, but the proposal is not designed to save money or reduce spending.
We are trying to make this money stretch farther and get better results for people’s lives. We need to manage the extensive resources we now have more effectively. People with the most severe disabilities are not always the most expensive; many people with substantial disabilities have strong families and informal supports who become part of the community long term care plan rather than being replaced. Also, the entity that gets the money, the CMO, does not decide who gets in, and there are many safeguards in place to keep those functions separate. In any case, it won’t matter how much a particular individual costs if the payment levels are right. If the CMOs provide inadequate care, people will deteriorate and costs will increase, so CMOs have an incentive to provide adequate services. Monitoring will be in place to determine whether people are getting adequate, high quality services. If the monthly advance payment rates are adequate for different people and situations, there will be no disincentives to serve those with the greatest need. Those who go to hospitals or nursing homes will continue to be the responsibility of the CMO. They will have ongoing care management, and the CMO will maintain or establish support arrangements for people to return to. This is managed care that works much like Wisconsin’s Community Options Program. It is an improvement on Community Options with all benefits in one program, instead of patching together COP, Waiver, and Medicaid card services with their different rules and emphasis on different settings.

Q: Where will the expanded workforce come from?
A: Worker supply is a major problem whether we redesign the system or not.
In the future, the responsibility to develop whatever providers are needed will be directed at the local CMO. All people with nursing home level of care needs and all Medicaid-eligible people with less severe needs will be entitled to services through the CMO. This will create incentives to recruit, cultivate, and retain a quality workforce. CMOs will also need to develop non-traditional providers and innovative residential arrangements such as supported apartments (or Residential Care Apartment Complexes), where people have their own apartments but providers are available for several residents. The new system will have to provide adequate compensation, training, peer support, and career paths to retain the best workforce. The greatest potential for enlarging the pool of workers is in the many family members, friends, neighbors and community members known by program participants. These relatives and acquaintances can become providers under protocols to assure that payments are reasonable and necessary.

Q: Will people be able to keep their doctors? How will their acute health care needs be met?
A: Since this plan does not include acute and primary care, it does not affect people’s choice of doctors, hospitals, clinics, or dentists.
The CMOs will have strong linkages to resources for primary and acute care and incentives to assure that their participants connect with the most prompt and excellent medical care possible.

Q: Who can participate in the new system?
A: People who are elderly and adults who have physical/developmental disabilities, those with sensory limitations, dementia such as Alzheimer’s, and all other adults who meet level of care eligibility on the functional screen at the Comprehensive level are eligible.
Children and persons with a primary diagnosis of severe mental illness or substance abuse problems are not included and are the subject of other redesign planning efforts. People who meet the comprehensive level of care for long term care through the CMO may get mental health services through the CMO, but people with mental illness who do not pass the LTC functional screen will be served as they are now by the current mental health system. Everyone who needs information, assistance, and advice will be able to get it from the Aging and Disability Resource Centers. Everyone presently receiving services will continue to receive services as long as their need exists. This includes everyone who presently qualifies for nursing home care, the Community Options Program, or the Community Integration Program, as well as any new applicant who meets the Comprehensive level of care will also be assured care. Further, people who qualify at the Intermediate level of care and are either Medicaid eligible or require adult protective services are also assured services. Other individuals who qualify at the Intermediate level of care may have to wait for services, but they are included.

Q: What will assure quality in the new system?
A: Extensive accountability is built into this proposal.
The state will continue to license/certify services such as nursing homes and CBRFs, but many additional efforts to assure quality will be moved to the local level. Detailed contracts will be developed between the Department and CMOs and between CMOs and providers. Providers will have to compete and provide high quality services at a reasonable cost. Strong performance outcomes will be specified and monitored. Consumer involvement, choice, and control are expanded. Each local long term care council, with 51% consumer members, will monitor complaints, Ombudsman activities will continue, and an expanded system of independent advocacy will monitor quality as well. Services will be designed around each individual’s needs and preferences. People will have the option of choosing care providers and arranging and coordinating as much of their package of supports as they want. Procedures will be established to review people’s support arrangements on a regular basis to make sure the things that were planned with them are, in fact, in place and working as envisioned. People will be visited and interviewed to determine whether what was arranged is still what they need and want, is being provided in a satisfactory way, and is resulting in positive outcomes. Each CMO will be responsible for assuring participants’ quality of life as long term care recipients.

Q: Will I be able to work without losing my benefits?
A: Eligibility is designed to support those who can work.
A new Pathways program (details available from Dan Johnson) will eliminate further barriers to employment by protecting Medicaid benefits for working people with disabilities.

Q: Will people currently in the system have their services disrupted?
A: People who are Medicaid eligible can choose to stay with their current fee for service long term care program, or choose to participate in Family Care.

Q: Is there political support for all of this?
A: Governor Thompson has made Family Care a top priority, and just as there has always been bipartisan support for COP, we expect bipartisan support for this bigger program.
The Redesign Proposal for Family Care will be introduced into legislation as part of the 1999-2001 Budget Bill.

Q: When will the money be pooled to fund the new system? Will I lose services?
A: The transition will be gradual.
People already in the system will continue to be eligible for the services they receive now. Eventually, most of the resources will be pooled – including all the public funding for long term care such as nursing homes and Medicaid community services. First, all the Resource Centers and Care Management Organizations will be fully phased in.

Q: What about "risk?"
A: CMOs will gradually accumulate a risk reserve (like an escrow account) for emergencies. If they overspend their budget, they will have to tap into the reserve before the state will assist. Ways to share risk are being explored.

Q: Can private pay individuals buy into this system?
A: They will be able to get the assistance they need to put together support arrangements to keep them in place by privately paying for care management services.

Q: Who will keep the counties honest?
A: We all will. Extensive quality and accountability are built into the proposal.
There is strong consumer choice, involvement, oversight, and specific expectations for performance and quality outcomes for people. Counties will operate CMOs for two years. After that, opportunities would be available for additional CMOs.  

Suggestions put forward included:

  • Cover dental services for this population. They can'’t get them under Title XIX.
  • Provide a good consumer handbook from day one.
  • Give local LTC councils real authority.
  • End the nursing home bed tax and estate recovery.
  • Require real consumers on councils.
  • Control the costs of CBRFs.
  • Provide independent advocacy
  • Develop a State LTC Council

There were many additional questions and suggestions, and a more complete summary will be developed.

The forums were planned and funded by the Division of Supportive Living Administrator’s office, as well as the state Independent Living Council, the Wisconsin Coalition of Independent Living Centers, The Developmental and Physical Disabilities Councils, the Bureau of Aging and Long Term Care Resources, The Bureau of Developmental Disabilities Services, and the Office for Persons with Physical Disabilities. Arrangements were coordinated in the nine locations around the state by Area Agencies on Aging, the Independent Living Centers, the Office of Strategic Finance Area Administrators, and the county aging unit and human services or social services long term support staff in each county. Extensive publicity and outreach assured that attendance was much higher than anticipated. Participants were mostly consumers, COP program participants and their families and friends, with some providers and agency staff. The format was an informational overview of Redesign by Donna McDowell, Director, Bureau of Aging and Long Term Care Resources, and a long period for written and verbal questions from the floor with responses by Donna as well as staff from the Bureau for Developmental Disabilities Services, the Office for Persons with Physical Disabilities, and the OSF Regional Offices. Last Revised:  June 20, 2000

Last Revised: October 14, 2014