COMMUNITY-BASED LONG TERM CARE PROGRAMS IN WISCONSIN
Attorney Mitchell Hagopian
Disability Rights Wisconsin
July 2013
I.
INTRODUCTION

In 1981, with the creation of the Community Options Program, the state of Wisconsin began an
important shift in the delivery of long term care services to Wisconsin residents. Prior to 1981,
low-income residents with long term care needs frequently had no option but to receive needed
services as an inpatient nursing home resident. The reason for this was that most long term care
services that are necessary to enable individuals to continue living in their own home or other
community-based settings were not covered by Medical Assistance or Medicare. Although there
continue to be significant gaps in the availability and accessibility of community-based long term
care services, Wisconsin now has an array of long term care programs and pilots designed to make
it possible for older persons and people with disabilities to remain in the community. Most of the
long term care delivery system is now funded by the Medicaid program through various “Home
and Community Based Services” (HCBS) Waiver programs.

In 2000 Wisconsin began transitioning from the so-called “Legacy Waiver’s” to Family Care, a
managed long term care waiver. In the ebullient words of the DHS Administrator who presided
over the first 9 years of the transition: “We are involved in a long term care reform effort that
provides a model for the nation, transitioning from the progressive and innovative home and
community based waiver programs to Family Care.” I think the quote speaks for itself.
II. MEDICAID
The principal parts of the Medicaid program that serve people with long term care needs in the
community are the Medicaid “waiver” programs and the basic Medicaid card.
A. Federal Medicaid “Waiver” Authority: 42 U.S.C. § 1396n(c); 42 CFR § 441 Subpart G

Medicaid Waiver programs were created by the federal government as a means of allowing
states to use federal Medicaid funds to serve people in their home communities rather than
institutions. They are called “Home and Community Based Services” (HCBS) Waivers. The
term waiver comes from the fact that states request “waivers” of certain federal Medicaid
requirements –like “statewideness” and “comparability” (meaning the program does not have
to be available to all Medicaid recipients or be available in all parts of the state). “Waiver”
programs are funded by “sum certain” appropriations, meaning that when all funds are
allocated people may be put on waiting lists for waiver services. Two “waiver” programs
exclusively serve people with developmental disabilities; two serve the elderly and people with
physical disabilities; one serves people with traumatic brain injury; one serves people with
mental illness and one serves children with severe disabilities. People with mental illness who
are age 65 and older or who have another qualifying disability may also be eligible for any of
the other waiver programs for adults.
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
The traditional MA Waiver programs and regular COP, unlike regular Medicaid, are funded
with “sum certain” rather than “sum sufficient” appropriations. This means that mere
functional and financial eligibility for the program does not guarantee receipt of services. Once
state funds appropriated for a waiver program have been committed there are no more available
unless the legislature appropriates more. As a result, there are long waiting lists for MA
Waiver services.
B. Federal Managed Care Waiver Authority: 42 U.S.C. § 1396n(b); 42 CFR § 438

States can deliver Medicaid services (both regular Medicaid services and home and
community-based services) through a managed care system as a means of promoting to
“cost-effectiveness and efficiency.” In the context of long term care to the elderly and
people with disabilities Wisconsin has used the HCBS and managed care waiver authority
to create its Family Care program. In addition, some of the traditional, non-waiver,
Medicaid services (e.g. durable medical equipment, private duty nursing, home health and
personal care) are included in the Family care benefit package.
C. Wisconsin’s Medicaid Waiver Programs
1. Family Care: § 46.286, Wis. Stats.; § DHS 10 Wis. Admin. Code

The Family Care program was authorized by the Wisconsin legislature in order to test a
model of comprehensive and flexible long term care service system that would emphasize
consumer-directed delivery of services. Family Care uses state and federal MA funds to
provide long term care assessments, care plans and services, both institutional and
community-based. The program serves physically disabled, developmentally disabled and
elderly individuals who meet the functional and financial eligibility criteria. A primary
goal of Family Care is to eliminate waiting lists for community-based long term care.

Family Care is now Wisconsin’s main Medicaid long term care program for frail elders and
adults with physical and intellectual disabilities.

Family Care replaces CIP 1A, CIP1B, CIP II, COP-W, BIW and state funded COP (see
discussion, infra) when it becomes operational in a county.

Applicants, who are screened at the comprehensive functional eligibility level, need not be
MA eligible. However, due to lack of funds this category of non-MA eligibility was “put
on hold,” (read eliminated) effective October 2001.

Family Care has two primary components. First, Aging and Disability Resource Centers
(ADRC), which provide “One-stop-shopping” for older people and people with disabilities
and their families for information and advice about a wide range of resources available to
them in their local communities. Second, Care Management Organizations (CMO’s) or
Managed Care Organizations (MCO’s) were created to manage and deliver the Family Care
benefit, which combines funding and services from a variety of existing programs into one
flexible long term care benefit, tailored to meet each recipient’s individual need’s and
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preferences.
Care management organizations receive a per member monthly
reimbursement.

The Family Care CMO’s are currently operating in 57 counties. Family Care ADRCs are
in operation in all counties in which the Family Care benefit is available and in some
additional counties. An ADRC must be in place at least two months before the Family Care
benefit starts.

Once Family Care is initiated in a county the existing COP/CIP waiting lists are eliminated
over a 36 month period. Once the waiting lists are eliminated Family Care becomes an
“entitlement” and newly eligible people can access the benefit immediately. Currently, 55
counties are at full entitlement.

Temporary halt to enrollment in 2011

On July 1, 2011 enrollment in Family Care (as well as in Partnership, PACE and
IRIS) was capped by operation of the state budget act. New enrollments are only
allowed for relocations from institutions or if a person presents an “urgent” need.
Otherwise, people will only be allowed to enroll when a slot becomes available
through attrition, i.e. death, relocation or loss of functional or financial eligibility.
The cap on enrollment was scheduled to end on June 30, 2013. See 2011 Wisconsin
Act 32.

On April 2, 2012 the enrollment cap in Family Care, Partnership, PACE and IRIS
was lifted. 2011 Wisconsin Act 127 repealed most sections of Act 32 that had
limited enrollment in the aforementioned LTC programs. This means that the “cap”
never was. Although there has been no written guidance from DHS, statements
made by DHS personnel indicate that anyone who would have become eligible
anytime while the cap was imposed is eligible for immediate enrollment in the LTC
program of their choice (among the options available in their county of residence).
In other words, counties must catch up with enrollments as quickly as possible—
they cannot “pick up where they left off” on July 1, 2011. Actual enrollments will,
as a practical matter, occur at a rate controlled by the capacity of a county ADRC to
enroll people and of MCOs and IRIS to develop plans for this backlog of people.

Hypothetical Example: County had a waiting list of 360 when it started Family
Care/IRIS and had 36 months to eliminate it, at a rate of 10 persons per month.
County was 10 months into the phase-in when cap took effect on July 1, 2011.
When the cap was lifted on April 2, 2012 the 90 people (10 people x 9 months the
cap was in effect) whose enrollment had been stymied by the cap were immediately
eligible for services. In addition 10 people in April are entitled to services and the
county is 21 months into the 36 month phase-in to entitlement.

The one area that was substantively tinkered with in Act 127 relates to expansion of
the Family Care benefit to new counties. Under previous law DHS could expand
Family Care/IRIS simply by notifying the Joint Committee on Finance of its intent
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to do so. Unless Joint Finance affirmatively scheduled review of the proposed
expansion within 14 days, the expansion would take effect. This was referred to as
“passive review” by Joint Finance. Under Act 127 any proposed expansion of
Family Care/IRIS must be specifically approved by Joint Finance. There are no
time limits within which Joint Finance must act on the proposed expansion,
meaning that if Joint Finance does nothing, the expansion does not occur. 2011 WI
Act 127 § 1g.

Family Care covers all services covered by Medicaid Waiver programs and COP. It also
provides some non-waiver, Medicaid services (e.g. durable medical equipment, private duty
nursing, home health and personal care). Family Care does not provide acute care services,
such as hospital care or physician care, which enrollees continue to receive on a Medicaid
fee-for-service basis.

Family Care participants are supposed to be able to self-direct some or all of their services.
This feature of Family Care is not well publicized to participants and is underutilized.

CMOs receive a capitated rate for each enrollee. The aggregate amount of funds for all
enrollees is used to fund the long term care needs of all enrollees and the administrative
costs associated with the CMO.

Family Care enrollees have expanded appeal rights if they disagree with the plan that has
been developed for them. § DHS 10.55 Wis. Admin. Code.
2. IRIS (Include, Respect, I Self-direct) Waiver
 In order to comply with “choice of provider” mandates in the Medicaid program. CMS
required Wisconsin to create a long term care alternative to Family Care in counties that had
only one CMO.
 Wisconsin’s responded by creating a self-directed support waiver in which a person in any
Family Care County may enroll instead of Family Care.
 Enrollees are assigned an IRIS allocation which they use to develop a budget and service
plan to directly purchase the services they want. The budget amount is based on the level of
need identified by the long term care functional screen.
 If the initially assigned allocation is insufficient to fund the appropriate plan of support
participants may request an adjustment in their ongoing budget from DHS. They can also
request one-time allocations for specific services or supports. Unfortunately, the process for
obtaining an increased allocation is opaque and very slow.
 Enrollees use an IRIS Consulting Agency to help them develop a plan of support. Vendors
are paid through a fiscal intermediary called a Financial Services Agency.
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 Over 7,000 people have enrolled in IRIS since the program’s inception in 2009,
approximately 6,000 more than was anticipated by DHS when it created the program.
 There are no regulations and virtually no written policies governing the IRIS program. This
has created confusion for participants and led to arbitrary and inconsistent decision-making
by the IRIS program.
3. Community Integration Program IA (CIP-IA) § 46.275 Wis. Stats.

The CIP-IA program funds community services to persons who are relocated from any of
the two State Centers for the Developmentally Disabled.

Counties will currently receive a sum sufficient to appropriately place anyone who is
relocating from a State DD Center.

In the past (before July 1, 2007) counties received a set per day rate for each CIP-IA
placement. For relocations occurring between July 1, 2003 and June 30, 2007 the rate was
$325 per day.

If the cost of an older placement exceeds CIP 1A rate the county pays 40.07% of the excess
cost. The remaining 59.93% of the excess cost is paid by Medicaid funds.

The CIP-IA rate has increased over the years, thus a person may have CIP-IA funding, but
the rate will be less than $325 (between $125 and $225) depending on when the person that
received the initial funding left a state center.

Services under this program are limited to people living in natural residential settings or
substitute care settings with no more than eight beds.

This is a “Legacy Waiver” and will disappear once Family Care is operational in all
counties.
4. Community Integration Program IB (CIP-IB) § 46.278 Wis. Stats.

The CIP-IB program funds community services to persons with developmental disabilities
of any age who are relocated or diverted from nursing homes or Intermediate Care
Facilities-Mental Retardation (ICFs-MR) other than the State Centers for the
Developmentally Disabled.

Services are limited to people who are living in natural residential settings or substitute
care settings with no more than to eight beds. A “natural residential setting” generally
means a person’s own home or apartment. “Substitute care” settings include Community
Based Residential Facilities (CBRF’s), Residential Care Apartment Complexes (RCAC’s)
and Adult Family Homes (AFH’s).
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
CIP-IB placements are funded at a base rate of $49.67 (unchanged since at least 2005) per
day.

For “state-funded” CIP-IB placements the county pays 40.07% of the cost in excess of
$49.67; Medicaid pays the remaining 59.93%.

For “locally funded” placements the county pays 40.07% of the entire cost of the
placement; Medicaid pays the remaining 59.93%.

CIP-IB ICF-MR Relocation Initiative: Since 2005, legacy waiver counties have been
permitted to use Medicaid dollars that had previously been earmarked solely for
institutional care of persons with developmental disabilities, to support community
placements. Under this initiative, counties will be able to use the Medicaid funds that paid
for the institutional placement to pay for a community placement. In a real sense the
“money follows the person” from the institution to the community.

Under this initiative, counties will also be required to pay 40.07% of the cost of the
institutional placement, effectively eliminating the institutional bias in the funding system.

Funds supporting the ICF-MR Relocation initiative are entirely state and federal (no county
dollars involved).

This is a “Legacy Waiver” and will disappear once Family Care is operational in all
counties.
5. Community Options Program-Waiver (COP-W) and Community Integration Program II
(CIP-II) § 46.27(11) and § 46.277

COP-W and CIP-II are targeted at people over age 65 and people with physical disabilities.

People with developmental disabilities or mental illness may be eligible for these waiver
programs when they reach age 65 or if they also have a qualifying physical disability.

Under COP-W counties receive an annual allocation from the state. Counties may spend an
average of $41.86 per day, but the per diem and number of individuals served is limited by
the allocation or the availability of additional local match. This means that a county could
access additional Medicaid funds by providing additional local match.

CIP-II funding is loosely tied to people leaving skilled nursing facilities and subsequent
delicensing of facility beds. Counties are reimbursed fully for expenses for each CIP-II
participant up to an average of $41.86 per day. A per diem variance may be available.

Services must be provided only to people living in a “natural residential setting,” which
generally means their own home or apartment, or in small “substitute care” settings.
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Substitute care settings include Community Based Residential Facilities (CBRF’s),
Residential Care Apartment Complexes (RCAC’s) and Adult Family Homes (AFH’s). As
part of the 2001-03 budget, the acceptable size of a CBRF was increased to 20 beds, or
more than 20 beds, with DHFS approval.

CIP-II Nursing Home Relocation Initiative: In September of 2005 the state launched a
relocation initiative aimed at people with physical disabilities and elderly people. Under
this initiative, people wishing to relocate from nursing facilities have immediate access to
funding to do so. Originally, the budgetary assumptions associated with the program
required an average $25 savings for each person who relocates. For people whose
community care was cheaper than their Medicaid nursing home costs funding was
immediately available. People whose community plans were more expensive than nursing
home costs may be placed on a “pending list” until savings from less expensive plans
created sufficient resources to fund the more expensive plan while staying within the state’s
overall budget parameters.
The cost saving requirement was eliminated in 2007. For relocations that have occurred
since then the state has paid the full cost of relocation and has not delayed any relocations
based on cost.

Funds supporting the Relocation initiative are entirely state and federal (no county dollars
involved).

These are “Legacy Waivers” and will disappear once Family Care is operational in all
counties.
6. Brain Injury Waiver (BIW) § 46.278, Wis. Stats.

The BIW serves a limited number of people with brain injuries who need significant
supports in the community.

People with developmental disabilities or mental illness may be eligible for the BIW if they
also have a brain injury.

Services are limited to people living in natural residential settings or substitute care settings
with no more than eight beds.

BIW placements are funded at $180.00 per day.

For “state-funded” BIW placements the county pays 40.07% of the cost in excess of
$180.00; Medicaid pays the remaining 59.93%. To be eligible for a state-funded BIW
placement a person must have successfully completed a stay at one of three brain injury
rehabilitation centers.
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
For “locally funded” BIW placements the county pays 40.07% of the entire cost of the
placement; Medicaid pays the remaining 59.93%. For locally funded BIW slots it is not
necessary for an individual to have completed a stay at one of the rehabilitation centers.

This is a “Legacy Waiver” and will disappear once Family Care is operational in all
counties.
7. Children’s Long Term Support Waiver (CLTSW)
Established on January 1, 2004, the “Children’s Waiver” is designed to serve children with
significant long term support needs. For political reasons the original primary beneficiaries of
this waiver were children with autism who require “intensive in-home autism services.” The
2007-2009 State Budget contained funding to expand services to disabled children who do not
have autism.
8.

The Children’s Waiver serves a limited number of people under the age of 22 with a
developmental disability, severe emotional disturbance or a physical disability.

The majority of slots are still reserved for children with autism who require (or required
in the past) “intensive in-home autism services.”

The legislature continues to provide additional funding to support children with
disabilities other than autism.

In order to be eligible for the CLTS Waiver a child must qualify for a DD, PD or SED
(severe emotional disturbance) level of care (LOC) reimbursable by Medicaid in a
comparable institutional setting. The LOC determination process requires the
completion of the application for Katie Beckett, as well as all related documentation
from families.

There is a sliding scale cost share that begins at 1% of service costs for a family above
330% of poverty and maxing out at 40% of service costs for families at or above 2000%
of poverty.

This is not a “Legacy Waiver.”
“Money Follows The Person” Initiative

Since June 2007 additional funding through a federal demonstration program has been
available to support people relocating from Nursing Homes, Intermediate Care
Facilities for the Mentally Retarded and Institutes for Mental Disease.

This funding will only be available to support people in individual apartments or
settings that combine four or fewer unrelated individuals (in other words no CBRFs).
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
A minimum stay of six months in the institutional setting is required.

Funds supporting these placements are entirely state and federal (no county dollars
involved).
9. Community Opportunities and Recovery (COR) Waiver § 46.2785 Wis. Stats.
10.

Established on July 1, 2007, the Community Opportunities and Recovery (COR)
Waiver administered by the Division of Mental Health and Substance Abuse Services
(DMHSAS) offers adult persons with serious mental illness and co-occurring physical
disabilities a choice of relocation from nursing homes to the community. COR is a
recovery focused waiver program designed to support this target group. Participant
direction of services is a participant option included in four COR Waiver services. A
comprehensive assessment will identify the needs of an individual. An individualized
plan of care will determine the mix of waiver services to be provided. The plan will
include agreed upon mental and physical health services. A backup plan will also be
developed during the planning process to ensure supports are available for safety at
times for individuals at high risk. The array of COR Waiver services are available to
complement services available in the state Medicaid plan.

Eligibility for COR will be based on initial and continuing Long Term Care Functional
Screen eligibility, a diagnosis of serious mental illness, and the interest and the ability
of the individual to live in a community setting. The COR waiver uses the existing
financial and functional eligibility processes in place for the Community Options
Program –Waiver (COP-W) participants.

Individuals seeking diversion from nursing home placement are not included in COR.

DHFS Estimates approximately 500 people statewide are currently potentially eligible.
Waiver permits up to 250 people to be served after three years.

Initially only individuals whose plan costs are $100 or less will be permitted to
participate.

See DMHSAS Action Memo 2007-17, Sept. 20, 2007. Also, Medicaid Waivers Manual
2.02 E.

This is not a “Legacy Waiver.”
Covered Services
Allowable services under the above programs vary somewhat from program to program. In
general, community-based long-term care programs provide the following services:


Case Management
Respite Care
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
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Supportive Home Care
Nursing Services (COP-W and CIP II only)
Transportation
Adult Day Care
Supported Employment (CIP-1A and CIP-1B only)
Consumer Directed Services
Adaptive Aids
Daily Living Skills Training
Home Modifications
Counseling and Therapeutic Resources
Substitute Care
Attendant Care Locator Services
Meal Preparation or Delivery
Prevocational Services (CIP-1A and CIP-1B only)
Protective Placement or Guardianship Services (CIP II and COP-W only)
Intensive in-home autism services (CLTS only)
11. Integrated and Managed Care Programs and Pilots
a. Wisconsin Partnership Program: 42 CFR § 434.20-21

The Partnership program is a comprehensive program of services for older adults (age 55 and
older) and people with physical disabilities. Recipients must be MA eligible and may also be
Medicare eligible. Contractors receive a capitated per member rate from Medicare and MA
funds. The program integrates health and long term support services, and includes home and
community-based services, physician services, and all medical care. Services are delivered in
the participant’s home or a setting of his or her choice. A key component of the Partnership
program is team-based care management.

Providers use the combined capitation rates to meet recipients’ long-term and acute care needs.
The services include some things that are not covered by normal fee-for-service MA or
Medicare, such as case management services and on-going psychological services.

The Partnership program was originally a “pilot” program, but has become a major presence
since the state committed to managed long term care. It is currently operational in several
counties (mostly in the northwestern part of the state) as a competitor of the Family Care
MCO’s.
b. Program of All-Inclusive Care for the Elderly (PACE): 42 U.S.C. §§ 1395e, 1396u-4

The PACE program began as a national demonstration program designed to help the frail
elderly live independently in their own communities and avoid unnecessary nursing home
placement. Program contractors receive funding from MA and Medicare on a capitated basis
and are responsible for arranging and paying for both acute and long-term care for eligible
participants. A primary focus of the PACE program is the concept of adult day health centers
and clinics where participants meet regularly with members of their interdisciplinary care team,
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which includes physicians, nurses, social workers and therapists. The PACE program is only
available in the counties of Milwaukee and Dane.

III.
Providers use the combined capitation rates to meet recipients’ long-term and acute care needs.
The services include some things that are not covered by normal fee-for-service MA or
Medicare, such as case management services and on-going psychological services.
STATE PROGRAMS
A. Community Options Program (COP) § 46.27 Wis. Stats.
 The Community Options Program is an entirely state-funded, county-operated program which
pays for community-based services to Wisconsin citizens who need long term assistance with
performing the activities of daily living. It is sometimes called “regular COP” or “COP Classic”
to distinguish it from COP-W.
 COP is designed to divert or relocate individuals from nursing homes or other institutions.
 The target populations include people who are elderly (age 65 and older), have developmental
disabilities, physical disabilities, serious and persistent mental illness and/or chemical
dependencies who require a level of care for which Medicaid would pay for institutional care.
 COP is not, however, part of the Medicaid program. Because COP is not part of Medicaid, it
can pay for services that the “waiver” programs cannot. Instead, payment is allowed for any
services that are necessary to implement the individual’s plan of care. However, if a COP
applicant is eligible for a MA Waiver program and MA Waiver funds are available, those funds
must be used before any COP funds may be used. COP funds are most typically spent to
provide pre-relocation funding (e.g. security deposits, utility installation and other home
modifications); assessments and case plans prior to eligibility for MA-Waivers; to purchase
services that cannot be funded by the MA-Waiver programs, such as room or board expenses; or
to supplement funding provided under the other community-based long term care programs.
 Counties receive an annual COP allocation from the state. In addition, the state operates a “COP
High Cost” fund which can be accessed by counties for individual, usually time limited,
expenditures.
B. Community Aids § 51.423 Wis. Stats.



Each county receives funding from the state to support its services to people with
developmental disabilities, mental illness and substance abuse.
Community Aids is allocated on an annual basis and is distributed in a single payment to each
county. Counties are required to match these funds (9% match requirement).
Many counties provide a substantial amount of funds above the match requirement. These
funds are commonly referred to by county personnel as “overmatch” dollars.
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
Like COP, Community Aids is not part of Medicaid. It can therefore also pay for services that
the “waiver” programs cannot.
C. Importance of State Funded Programs For People With Mental Illness

Because there is no Medicaid waiver program targeted at people with mental illness who
are not currently in nursing homes, COP and Community Aids (together with the Medicaid
card) end up being the principal public funding sources for people with mental illness who
live in the community.

In addition, although not “waiver” programs, Community Support Programs (CSP) and
Comprehensive Community Services (CCS) are available to support people with mental
illness in the community.
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