Family Care History:
Summary of Questions & 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 Wisconsins provision of long term care and support, answer
their questions, and obtain their input and suggestions. The final draft of the
Departments 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 individuals choices and strengths as well as
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 persons 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 individuals 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
A: Supports and services will be individualized and increase or decrease as peoples
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 persons 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
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: Isnt 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 peoples 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 wont 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 Wisconsins 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
peoples 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 Alzheimers, 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
individuals 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 peoples 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
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 cant 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
The forums were planned and funded by the Division of Supportive Living
Administrators 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