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P L A T F2011-2013
                 Wisconsin Board for People
                with Developmental Disabilities

     P L A T F2011-2013

       201 W. Washington Avenue, Suite 110, Madison, WI 53703
              Phone: (608) 266-7826 FAX: (608) 267-3906
      Email:   Website:
This publication was funded by the Wisconsin Board for People with Developmental Disabilities
using federal funds provided under P.L. 106-402 through a grant authorized by the U.S. Depart-
ment of Health and Human Services, the Administration on Developmental Disabilities, and the
Administration for Children and Families. The information reported herein was compiled pursuant
to the State Plan on Developmental Disabilities.
P L A T F2011-2013

  Table of Contents
  About the Board                                5
  Self-Determination: A Basic Wisconsin Value    7
  Introduction to Medicaid                       8
  Family Care, Family Care Partnership, IRIS     9
  Institutional Long-Term Care                  10
  Children’s Long-Term Support                  11
  Special Education                             12
  Direct Support Workforce Shortage             14
  Specialized Transportation                    15
                                        Wisconsin Board for People
                                       with Developmental Disabilities

About the Board
The Wisconsin Board for People with Developmental Disabilities (BPDD) advocates for new
policies and programs, and provides resources so individuals can advocate for themselves. The Board
creates and pilots new models of service delivery and community supports. Under federal law, the
Board cannot provide direct services or individual advocacy.

The BPDD is an independent state agency funded by the federal government. The governor appoints
people with developmental disabilities and family members as well as professionals, advocates, and
state agency representatives to serve on the Board.

Board Members
Cindy Zellner-Ehlers     Andrew Gerbitz                  Pam Malin           Jeffrey Spitzer-Resnick
Chairperson              Oconomowoc                      DePere              Madison
Baileys Harbor
                         Debra Glover                    Sue Nutter          Lynn Stansberry-
Barbara Katz             Milwaukee                       La Crosse           Brusnahan
Vice Chairperson                                                             Shorewood
Madison                  Michael Greco                   Katherine Maloney
                         Madison                         Perhach             Carolyn Stanford Taylor
Daniel Bier                                              Whitefish Bay       Madison
                         Ruth Gullerud
                         Eau Claire                      Qyla Person         Beth Wroblewski
Joan Burns                                               Racine              Madison
                         Denise Konicki
                         Baraboo                         Roxanne Price       Patrick Young
John Donnelly                                            La Crosse           Germantown
                         Robert Kuhr
                         Menasha                         Barbara Sorensen
Kevin Fech                                               Washburn
                         Ramsey Lee
Barbara Gadbois

(608) 266-7826                                                                                         5
                             A Basic Wisconsin Value

    Wisconsin has a proud history of supporting civil rights. Among these
    rights is self-determination, the right of all people to make decisions for themselves.

    The Board believes that every person has the right to become independent, productive,
    and included in all facets of community life. The right of self-determination is the founda-
    tion for these rights.

    For people with disabilities and their families who need publicly funded services, a key fac-
    tor of self-determination is self-directed supports.

    Self-directed supports means people have the right to control their budgets and
    choose the services and providers that best meet their needs.

    Individuals and families who have chosen to direct their own services report both positive
    outcomes and reduced spending. They more often choose services outside the traditional
    system and experience higher levels of inclusion and participation in their communities.

(608) 266-7826                                                                                      7

Introduction to Medicaid
Medicaid is also known as Medical Assistance and
Title 19 or Title XIX. It is a federal/state match         Governor’s Recommendations
program. For every $1 spent on services in Wiscon-
sin, the federal government generally provides $.60        • Reduce funding for Medicaid by $500 mil-
while the state pays $.40. Therefore, Medicaid is a        lion over the biennium.
revenue generator for the state budget.                    • Consider implementing increased co-pays
                                                           and deductibles.
People enrolled in Medicaid receive coverage for
                                                           • Offer multiple, customized benefit plans
medically necessary services from certified health
                                                           tailored to the needs of specific populations.
care providers. They are covered either through the
core of the Medicaid program or by BadgerCare or           • Bring the coverage of working families back
BadgerCare Plus. BadgerCare is an example of a             in line with private insurance.
Medicaid waiver program, where the federal gov-            • Provide power to the DHS Secretary and
ernment has granted a waiver to allow the state            the Joint Committee on Finance to determine
to expand services. Family Care is another waiver          changes to Medicaid.
program. (For more information about Family Care,
                                                           • Do not use provider assessments to gener-
see the “Family Care, Family Care Partnership,
                                                           ate greater federal match funding.
IRIS” section of this platform.)

People with disabilities are in a difficult situation.
Most private insurance policies are still allowed to
refuse to cover pre-existing conditions, so low-
income people with disabilities rely on Medicaid and       Board’s Recommendations
BadgerCare for acute, preventive and long-term
care services. However, it is difficult for people with    • Maintain the Medicaid program in its cur-
Medicaid to access health care because the pro-            rent state, including BadgerCare, without
gram usually does not provide reimbursement rates          changes to eligibility, benefits, co-payments,
to doctors, dentists, therapists, hospitals, and other     or prior authorizations that harm individuals.
providers that cover the actual costs of services.
Therefore, many health care providers refuse to            • Ensure cost savings do not negatively im-
serve people on Medicaid. (Federally Qualified Pri-        pact Medicaid consumers or providers.
mary Health Care Centers are the main providers of         • Address the dental provider crisis by
dental services to people on Medicaid.)                    maintaining funding for Primary Health Care
Issue                                                      • Support the use of provider assessments to
The Medicaid program is a primary funding source           generate greater federal match funding, al-
for essential long-term care and health services for       lowing for provider rate increases that in turn
low-income people with disabilities. The typical in-       can increase access to Medicaid services.
come for an MA recipient with disabilities is $9,000-
10,000 per year. People in this situation cannot
afford increases in co-payments, new restrictions in
eligibility, or increased use of prior authorization for


Family Care, Family Care Partnership, IRIS
Wisconsin Family Care, Family Care Partnership and IRIS       Governor’s Recommendations
(Include, Respect, I Self-Direct) are Medicaid waiver pro-
grams that provide community long-term care services          • Stop expansion of Family Care, Family Care
through a managed care model. The IRIS program is             Partnership and IRIS to additional counties.
a self-directed supports home- and community-based
waiver program. The three programs serve individu-            • Freeze enrollment in counties where the
als with developmental or physical disabilities and frail     programs have been implemented.
elders. In the 57 counties where these three programs         • Encourage the use of self-directed services.
have been fully implemented, waiting lists have been
eliminated. The remaining 15 counties still have waiting      • Freeze funding for the Ombudsman Pro-
lists for services.                                           gram.
                                                              • Do not use MCO provider assessments to
The programs were created to streamline Medicaid
long-term care waiver programs, eliminate waiting lists
                                                              generate more federal match funding.
for adults, and create a system that supports individuals
with disabilities to pursue their goals of employment and
community participation. The system also recognizes
that under federal law, everyone who is financially and
functionally eligible must be served.
                                                              Board’s Recommendations

An individual enters the long-term care system through        • Expand the Family Care, Family Care Part-
an Aging and Disability Resource Center (ADRC). A Func-       nership and IRIS Programs statewide by 2013
tional Screen, which is a web-based application used to       in order to eliminate waiting lists for services
collect information about an individual’s functional sta-     needed by adults with developmental disabili-
tus, health and need for assistance, is used to determine     ties.
functional eligibility for the programs. Once determined
eligible, individuals then choose which of the three pro-     • Ensure the safety, independence and qual-
grams in which they want to participate.                      ity of life for individuals enrolled in Family
                                                              Care, Family Care Partnership and IRIS and
Individuals choosing Family Care or Family Care Partner-      ensure changes to the programs do not nega-
ship decide whether they want a Managed Care Orga-            tively impact participants.
nization (MCO) to manage all their services or whether
                                                              • Maintain the Ombudsman Program ratio
they want to self-direct some services and have the MCO
arrange for the others. Individuals choosing IRIS control
                                                              of one independent advocate for every 2,500
their budgets and self-direct all their services according    people enrolled to ensure integrity of the
to their care plan.                                           programs.
                                                              • Support MCO provider assessments to gen-
Issues                                                        erate more federal match funding.
While the philosophy and intent of the managed care
programs are to support people with disabilities in pur-
                                                              • Fund the programs at levels that allow
suit of their goals while fully participating in their com-   individuals to receive the services they need
munities, a number of concerns exist about the provision      in the environment they want, ideally in their
and quality of services in the Family Care and Family         own homes and the community.
Care Partnership programs. The Legislative Audit Bureau       • Expand opportunities for choice and con-
is conducting an audit of the Family Care Program to
                                                              trol and promote employment in integrated
be completed in 2011. The audit will look at financial
                                                              settings as the first choice for individuals in
solvency of the program and the MCOs, as well as rate
setting procedures, service quality, and other concerns       these programs.
about Family Care.

(608) 266-7826                                                                                                   9

Institutional Long-Term Care
Background                                              Issues
Institutions for people with developmental disabili-    Many of the individuals residing at Southern Center
ties are also known as Intermediate Care Facilities     could be supported in the community. The Depart-
for the Mentally Retarded (ICFs-MR). ICFs-MR can        ment of Health Services has requested 105 addi-
be owned and operated by private entities, coun-        tional staff for Southern Wisconsin Center at a cost
ties, or the state. The state ICFs-MR are Central       of $15 million over the 2011-13 biennium because
Wisconsin Center for the Developmentally Disabled,      only 11 people are anticipated to voluntarily relo-
Southern Wisconsin Center, and Northern Wisconsin       cate to the community. Only 161 individuals are
Center. Northern Center only supports individuals       long-term residents at Southern Center.
with behavior challenges for short periods of time
and does not have long-term residents, while the
other two centers do support people long-term.
As of December 2010, only 11 non-state-operated
ICFs-MR remained in the state.
                                                          Governor’s Recommendation

The ICFs-MR operate on state and federal Medicaid         • Approve the Department of Health Ser-
funding. The State Centers are reimbursed for the         vices’ request for additional staff for Southern
actual cost of providing care. The other ICFs-MR          Wisconsin Center.
receive rates based on the costs of direct care, sup-
port services, property tax and municipal services,
property acquisitions, and provider incentives. The
rates for all ICFs-MR include medical services and
supports such as therapies and durable medical            Board’s Recommendations
                                                          • Close the long-term care facility at South-
Average cost per resident per day:                        ern Wisconsin Center and retain short-term
Central Wisconsin Center: $830                            services capacity, using any savings to fund
                                                          appropriate community services for reloca-
Southern Wisconsin Center: $634                           tions.

For decades, the only option for families and             • Continue the ICFs-MR restructuring pro-
individuals needing long term care services were          gram that has successfully relocated 725
institutions. However, community capacity to serve        individuals back to the community.
people has increased and institutions are no longer
the sole option for individuals and families. The
ICFs-MR relocation programs have successfully
worked with 725 individuals with developmental
disabilities so they can return to their home com-
munities. That leaves approximately 410 people
with developmental disabilities in the state centers,
338 people in other ICFs-MR, and 76 people in
nursing homes.


Children’s Long-Term Support
Background                                               Issues
Families of children with disabilities or chronic        Families of children with disabilities or chronic
health problems can have extraordinary needs             health concerns face serious issues. Close to 3,000
that require support beyond families’ capacities to      children are waiting to participate in the Children’s
provide. The Children’s Long-Term Support waiver         Long-Term Support Program. Of those waiting for
program provides the services that children need to      services, 295 are children with autism and 1,596
gain independence and maximize their potential.          are children with other developmental disabilities.
                                                         In addition, families outside Racine and Walworth
The long-term care system serving children with          counties do not have access to COMPASSWisconsin
disabilities is underfunded and inconsistent across      and must work with an inefficient and burdensome
the state. The type and quality of services of-          service system.
fered depends upon the county in which the family
resides. Services vary widely between counties but
also within counties; some children receive quality
services while others are on waiting lists. Even the       Governor’s Recommendations
amount of information available to families varies
widely.                                                    • Maintain funding for current placements.
                                                           • No proposal to address expansion of
The service system for children is a patchwork of
                                                           COMPASSWisconsin or Department of Health
Medicaid and Medicaid waiver programs. Since the
                                                           Services (DHS) staff capacity.
system is not comprehensive or streamlined, gaps
remain. Of the 5,061 children participating in the
Children’s Long-Term Support Program as of No-
vember 30, 2010, 2,360 were children with autism
who receive intensive in-home behavioral treatment
or ongoing services and 2,701 were children with            Board’s Recommendations
other developmental disabilities.
                                                            • Expand COMPASSWisconsin beyond Racine
COMPASSWisconsin is a pilot program in Racine               and Walworth Counties to serve at least 25%
and Walworth counties that streamlines the eligibil-        of children with disabilities or chronic health
ity process for the Katie Beckett, Family Support,          problems in the state.
Children’s Long-Term Support waiver programs,
and the Community Options Program. Coordinating             • Continue the commitment to end wait-
information and eligibility reduces waiting lists, im-      ing lists for children by serving an additional
proves cost effectiveness and prevents crises that          1,000 children over the biennium.
result in more costly services such as short-term           • Increase the capacity of DHS staff to pro-
placement in an institution, reduces duplication,           vide quality assurance and oversight to coun-
and connects families to community resources.               ties implementing COMPASSWisconsin.

(608) 266-7826                                                                                                11

Special Education
As is the case for all children, a quality education is   districts compensate for the differences in property
vital to the growth and future success of children        tax revenue, but property taxes still cover a large
with disabilities. Many children with disabilities,       part of education costs. Property taxes are unpopu-
however, need extra support in school in order to         lar and create tension between property owners
learn and succeed. Like all students, they need           and school districts.
opportunities to participate in a challenging curricu-
lum and to access school activities of their choice.      The Department of Public Instruction (DPI) has
Research shows that early work experiences dur-           proposed the “Fair Funding for Our Future” school
ing high school and self-determination training are       finance plan. The proposal contains some fund-
directly linked to positive outcomes of living and        ing reform elements, raises state funding for 94%
working independently as adults.                          of districts, and maintains current funding for the
                                                          remaining 6%. Some of the key provisions of the
Except for the last year, state and federal support       proposal include:
for special education has steadily dropped for more
than 10 years. School districts must make up the          • Maintaining the revenue cap system with modifi-
remainder of the costs from equalization aids and         cations
property taxes. If a child with a disability has a        • Establishing a floor of minimum state aid per
greater need for special education services, districts    pupil at $3,000
may have difficulty paying for such costs.
                                                          • Adding 20% for every child in poverty in each
Local taxes help fund school districts. In wealthier      district
districts, more funding is available because these        • Keeping Special Education Categorical Aids reim-
districts have more property taxes available to           bursement levels the same at 27.9% for regular aid
them. The state provides funding to help poorer           and 42.3% for high-cost aid.

     Governor’s Recommendations
     • Reduce general aid to schools by $800 million      • No provision of proposals to address em-
     over the biennium.                                   ployment, self-determination training, or add a
     • Lower the revenue cap by 5.5% so property          categorical aid for Response to Intervention.
     taxes cannot be increased by local school dis-       • Adds $40 million to expand Milwaukee School
     tricts to make up for decreased state aid.           Choice (voucher) program to include middle and
     • Maintain the current school financing system.      upper income families, as well as expand open
                                                          enrollment and charter schools.
     • Freeze funding for Special Education Categori-
     cal Aids which will cause the reimbursement rate
     to school districts for special education costs to
     decline due to rising costs.
     • Freeze funding for high-cost special educa-
     tion aid to school districts, which will cause the
     reimbursement rate to school districts to decline
     due to rising costs.


Special Education continued

The DPI proposal does not specifically address            of the cost of special education services, leaving lo-
early intervention for struggling students. The last      cal districts to pick up the remaining balance.
reauthorization of the Individuals with Disabilities
Education Act directed states to spend up to 15%          Education of students with disabilities is inconsis-
of its federal funding on early intervention services.    tent across the state. Some students are taught
Response to Intervention (RTI) is one model of            with challenging curriculums in inclusive environ-
early intervention.                                       ments while other students with similar needs are
                                                          not. Early work experiences and training in self-
RTI integrates assessment and intervention to help        determination is not provided in every district. All
children achieve academically, reduce behavior            students should be taught in a safe environment by
problems, and reduce inappropriate referrals to           staff skilled in providing positive behavioral sup-
special education. Schools identify students at risk      ports, however, that is not the case. In addition,
for poor learning outcomes, provide interventions         though RTI has been proven to reduce costs and
and adjust the intensity and nature of those inter-       avoid inappropriate referrals, it has not been fully
ventions depending on a student’s responsiveness.         implemented statewide.

School districts are struggling to provide opportuni-
ties for inclusive supports for students with disabili-
ties due to the insufficient state and federal aid and
the additional challenges from revenue caps. On
average the state government pays about 27.9%
and the federal government pays between 14-18%

  Board’s Recommendations
  • Support the school financing reform plan pro-         • Establish a categorical aid for Response to In-
  posed by the Department of Public Instruction.          tervention and provide additional state funding
  • Maintain the Special Education Categorical            to fully implement RTI in all Wisconsin school
  Aids level at the current 27.9% which requires          districts.
  a budget increase over the biennium of $48.8            • Pass legislation regulating the inappropriate
  million.                                                use of seclusion and restraints in school districts
  • Maintain the Special Education Categorical            by school personnel.
  Aids high-cost level at the current 42.3% which
  requires an additional $2.5 million increase over
  the biennium.
  • Introduce legislation to increase accountability
  of districts to provide early work experiences and
  self-determination training to youth with disabili-
  ties in transition.

(608) 266-7826                                                                                                  13

Direct Support Workforce Shortage
Wisconsin will need at least 5,000 new direct sup-       this amount, Wisconsin could provide high-quality
port professionals in the next five years to meet        training to the over 100,000 people who provide
expanding demand. A workforce crisis exists be-          services to long-term care recipients.
cause not enough people enter the field and pro-
viders cannot afford to offer the wages and benefits     Issue
that attract quality workers. Though direct support      The lack of qualified direct service workers is a criti-
professionals have reported that their work is very      cal health and safety issue for people with develop-
fulfilling on an emotional basis, the low wages and      mental and physical disabilities and elders. Direct
lack of benefits make it difficult, if not impossible,   service workers are the people who help individuals
to support a family. Wages and benefits are closely      with basic activities of daily life, such as getting
tied to the Medicaid provider reimbursement rates        ready in the morning and assisting individuals while
set in the biennial budget. If reimbursement rates       they are working.
are frozen or minimally increased, direct support
professionals see little wage or benefits increases.

Direct support agencies have a high level of turn-         Governor’s Recommendations
over, typically 50-60% per year. Studies show that
replacing a direct support professional costs about        • Realign provider reimbursement rates to
$2,500. The College of Direct Support (CDS) is a           match outcomes.
nation-wide training program developed by experts          • No proposal to address direct support pro-
in the field of disability services. Approximately         fessional salaries.
40,000 people in 30 states are making use of the
training on a daily basis. CDS has proven to save          • No proposal to address the College of Di-
money in the long-term care system by:                     rect Support.

• Reducing turnover
• Eliminating duplicative training
• Lowering liability insurance costs
                                                           Board’s Recommendations
CDS provides a baseline of applicable training to          • Increase Medicaid provider reimbursement
direct support workers on-line, reducing training          rates to specifically address direct support
costs to provider agencies.                                professional salaries.
The fee for CDS is based on the number of people           • Provide $1.5 million in state funding over
served in the long-term care system, not on the            the biennium to pay the licensing fee for the
number of trainees. The cost to train everyone             College of Direct Support to train workers of
who provides support to Family Care and IRIS               long-term care participants.
participants is estimated to be around $1.5 million
per year (40,000 participants at $35 per year.) For


Specialized Transportation
People with developmental disabilities and elders
cannot live independently in the community with-           Governor’s Recommendations
out reliable and affordable transportation. Access
to employment, education, and health care are              • Remove funding for public transportation
all affected by the availability of transportation for     systems from the segregated fund to the
people with different mobility needs. One program          general fund, where transportation will have
that funds transportation is the Specialized Trans-        to compete with other programs.
portation Assistance Program (85.21), which pro-           • Freeze funding for the Specialized Trans-
vides state aid to counties to provide local transpor-     portation program.

Wisconsin’s 2009-11 biennial budget included the
implementation of a state-wide transportation man-
ager (or broker) for Medicaid-funded transportation        Board’s Recommendations
services. The state-wide broker would schedule
rides for individuals around the state. The goal of        • Increase the funding for the Specialized
the broker is to efficiently provide transportation.       Transportation program by $5 million over
                                                           the next biennium to improve access to vital
Issues                                                     transportation services.
The Specialized Transportation Assistance Program
(85.21) is severely underfunded. The amount of             • Ensure the use of Medicaid brokers is
aid is a fraction of what it costs to serve all eligible   structured to promote efficient and effective
people needing transportation. Counties are forced         transportation services.
to divert funds from other equally critical human
services to make up the difference.

Using a state-wide broker, as opposed to regional
brokers, may make it more difficult for individu-
als to schedule rides. It may also have a negative
impact on the Volunteer Driver Programs, which
provide significant numbers of long-distance rides
in rural areas at very low cost to the Medicaid pro-

(608) 266-7826                                                                                             15
                   P L A T F2011-2013

                      Wisconsin Board for People
                  with Developmental Disabilities

       201 W. Washington Avenue, Suite 110, Madison, WI 53703
              Phone: (608) 266-7826 FAX: (608) 267-3906
      Email:   Website:

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