PRESENTS

Critical Issues in Olmstead Implementation

The First of our 2011 Olmstead Training
Series
 Brought to you by
The California Foundation for
Independent Living Centers, Inc.
Critical Issues in Olmstead Implementation

Wednesday, April 27, 2011

2:00 – 3:30 p.m.

Presented by Laurel Mildred, MSW

 Training Moderator:
Allan Friedman
Technology Manager, CFILC
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 What We’ll Cover Today

I. Historical Context
II. The Supreme Court Olmstead Decision
III. Litigation on Olmstead
IV. Initial Approaches to Olmstead Public
Policy
I. Historical Context
 Background
Historian Paul Longmore described a clash of
two contradictory public policies:
1) Exclusionary and segregationist policies that
were supported by conservatives and
progressives alike; and
2) Democratic and integrationist policies based
in civil rights and self-determination, that
were fought for and won by people with
disabilities themselves.
 Historical Treatment of People with
Disabilities
• “Unsightly Beggar” ordinances barred people with
disabilities from appearing in public (the first in San
Francisco, 1867).
• Forced commitment to Almshouse, Poor Farm or
Hospital, later to large-scale Institutions (to spare
society from the “unsightly and unseemly”).
• Relegation to segregated education to avoid
“hindering” the education of non-disabled children
(upheld by Wisconsin Supreme Court, 1918).
• Subject to job discrimination, including federal civil
service and New Deal work relief which rejected
people with disabilities as “unemployable.”
• Used as labor during labor shortages of World War
II, but lost jobs when war ended.
• Forced sterilization, particularly of those with
developmental disabilities.
• Focus of euthanasia policies advocated by leading
social activists.
• And policies that exist to this day that keep
millions of working age adults out of the job
market by means of social welfare policies
that provide health insurance, personal
assistance services, and payment for assistive
devices as long as they stay unemployed and
impoverished.
 Disability Rights Movements Emerged as
a Force for Change

• Many Movements of Many Constituencies,

But Operating from Similar Principles
• Arose Around the Common Fight against
Warehousing People in Institutions
• Founding of the Independent Living
Movement
 Some of the Key Elements of the
Disability Rights Agenda
• Legal Protection from Discrimination
• Right to Receive Quality Treatment or Services
• Right to Refuse Such Treatment or Services
• Due Process in all Professional or Governmental
Decision-making Affecting Them
• Equal Access to Public Transportation and
Accommodations
• Most Fundamental, Opposition to Forced
Institutionalization and Correspondingly, the Right to
Services in the Community
 Landmark Advancements Won by
Disability Advocates

1. In 1975 the Individuals with Disabilities

Education Act was passed by Congress, and
children with disabilities gained the right to
go to public school and get an education
alongside non-disabled peers, ending an era
where at least one million children were
denied education and four million more were
segregated from mainstream schools.
2. The Americans with Disabilities Act (ADA), the
world’s first comprehensive prohibition of
discrimination on the basis of disability, was
passed by overwhelming bi-partisan
majorities in Congress after two years of
extensive hearings detailing the “staggering
isolation” faced by people with disabilities.
The ADA was signed into law by President
George H.W. Bush on July 26, 1990.
3. On June 22, 1999, in response to a lawsuit
filed by two Georgia women residing in a
state psychiatric hospital, the U.S.
Supreme Court ruled in Olmstead v. L.C.
that unnecessary segregation and
institutionalization of persons with
disabilities is a type of discrimination that
violates Title II of the ADA.
II. The Supreme Court Olmstead
Decision
 The Olmstead Decision
In the ruling, the Court wrote,
“Confinement in an institution severely
diminishes the everyday life activities of
individuals, including family relations, social
contacts, work options, economic
independence, educational advancement and
cultural enrichment.”
-Olmstead V.L.C. (98-536) U.S. 581 (1999)
The Court explained,
Unnecessary institutionalization “perpetuates
unwarranted assumptions” that people with
disabilities “are incapable or unworthy of
participating in community life.”
In interpreting the ADA, the Court relied
heavily on an implementation regulation
promulgated by the U.S. Dept of Justice,
referred to as the “integration mandate.”
The ADA’s integration mandate requires a
state or local government to “administer
services, programs and activities in the
most integrated setting appropriate to the
needs of qualified individuals with
disabilities.”
 Who is a Qualified Individual?
A person with a disability who, “with or without
reasonable modifications to rules, policies or
practices; the removal of architectural,
communications, or transportation barriers; or
the provision of auxiliary aids or services,
meets the essential eligibility requirements for
the receipt of services or the participation in
programs or activities provided by a public
entity.”
Federal courts have ruled consistently that the
Olmstead decision’s protections apply to
people living in the community, not just to
those already institutionalized.
A second important feature of the ADA that the
Court relied on in the Olmstead decision is the
requirement for a state or local government to
“make reasonable modifications in policies,
practices, or procedures when the
modifications are necessary to avoid
discrimination on the basis of disability.”
 Fundamental Alteration Clause
State and local governments are excused from
making a modification if it “would
fundamentally alter the nature of the service,
program or activity.”
What does or does not constitute a “fundamental
alteration” is important. Courts have ruled that
a state’s claim of inadequate financial resources
is not automatically a “fundamental alteration.”
The Olmstead ruling required that states must develop
a working plan to serve qualified individuals in the
least restrictive, most integrated setting.

The Court also required states must maintain a

waiting list that moves persons to less restrictive
settings at a reasonable pace, not controlled by the
state’s efforts to keep its institutions fully
populated.
 In 2000, the U.S. Dept of Health and Human
Services Issued Guidelines for Compliance:

1. Incorporate consumer input into the state plan;

2. Prevent further unjustified institutionalization;
3. Ensure ongoing availability of services for people
w/disabilities to live in the community;
4. Ensure quality, improvement and sound
management to implement the plan.
 What’s Happened in 12 Years?
1. California’s Olmstead Plan lacked specificity and
accountability.
2. Lack of a “system” in the long term care system
results in fragmentation of services and funding,
with impacts on individual consumers as well as
overall budgets for services.
3. Policymakers’ acknowledgement of the effectiveness
of the In Home Supportive Services (IHSS) program in
reducing dependence on nursing home services, yet
decisions made to reduce funding for IHSS.
4. State policies and practices that impede
moving people out of institutions, including a
dearth of nursing facility waiver slots, MSSP
and other alternative programs, and a limit on
the Home Upkeep Allowance which makes it
unusable.
5. Progress towards deinstitutionalization in the
Department of Developmental Disabilities
and the Department of Rehabilitation, with
far less progress in other departments.
6. Small federally-funded pilot programs, but
limited expansion and deployment of those
programs.
7. Huge increases in spending for nursing homes,
whose funding is separate from home and
community-based services.
8. Lack of legislative knowledge and leadership
on Olmstead and community integration, as
compared to legislative mandates in other
states.
9. Duplicative use of assessments for long term
care users and lack of true care management
for those who want it.
10. Lack of affordable, accessible housing as a
major barrier to community integration, with
no coordinated effort to overcome this
barrier.
III. Litigation on Olmstead
 Obama Administration Prioritizing
Olmstead
• Under the leadership of Assistant Attorney
General Tom Perez, the U.S. Dept of Justice
Civil Rights Division announced it is “open for
business” and has identified Olmstead
enforcement as a top priority.
• The DOJ is now involved in litigation on
Olmstead in over 20 states, and is adding new
cases every day.
 Precedents Set By Litigation
• DOJ action is creating an unprecedented and
rapidly expanding body of Olmstead policy.
• By and large, policymakers are unaware of this
body of law and are not yet incorporating it
into planning and decision-making.
• There is a significant opportunity to use
education and advocacy to align policy with
these precedents.
 Highlights of Several
Significant Cases
Knipp v. Perdue (Georgia) – The historic settlement of
this case will serve as the “template” for Olmstead
enforcement across the country, setting the standard
for transitioning people with developmental and
mental health disabilities to the community, requiring
the state to create an array of community services for
9,000 individuals with mental illness, and providing at
least 1,000 Medicaid waivers to transition all
individuals with developmental disabilities from state
hospitals to community settings.
Boyd v. Herrmann-Steckel (Alabama) and Lee v.
Dudek (Florida) – Both of these cases focus on
people with physical disabilities who were
forced into nursing homes because of lack of
community services.
DOJ Acting Section Chief Renee Wohlenhaus
notes: “Virtually all individuals in nursing
homes in many places could be served in the
community.”
Disability Advocates, Inc. v. David A. Paterson,
et al. (New York) – (On appeal to Second
Circuit) – Precedent-setting case that requires
moving people with mental health disabilities
out of large adult homes and into community-
based supported housing.
Hiltibran v. Levy (Missouri) – A preliminary injunction
was granted in this case, preventing the state from
restricting medically-necessary incontinence
supplies to people with disabilities living in
communities while providing them to nursing
home residents.
Wohlenhaus comments about this case that the DOJ
is not just going to work on large items people
need to live in the community, but small needs too.
Frederick v. Dept of Public Welfare of the Commonwealth
of Pennsylvania – This case dealt with the inadequacy
of the state’s Olmstead Plan to address 1) Timeframe or
target date; 2) Approximate number of persons to be
discharged; 3) Eligibility standards for HCBS; and 4)
General description of interagency collaboration.
Wohlenhaus notes that many state Olmstead plans do not
meet these required elements, and that DOJ is offering
technical assistance to states to help them do what they
need to do to comply. She stated, “We are working
night and day to get this initiative working effectively.”
 DOJ Activity in California

In a White House Conference Call with disability

advocates in October, 2010, Assistant Attorney
General Perez mentioned California
specifically, saying, "You can't use your budget
crisis to shirk your responsibilities."
 Recent California Olmstead Cases
• Chambers v. City and County of San Francisco: Settlement of class
action lawsuit against San Francisco on behalf of residents of Laguna
Honda Hospital (LHH). San Francisco agreed to create 500 affordable,
accessible housing subsidies, provide case management, mental
health, and other services for class members moving or diverted from
placement at LHH.
• Capitol People First v. Dept. of Developmental Services: Settlement of
class action lawsuit against the State and 21 regional centers on behalf
of Californians with developmental disabilities residing in, or at risk of
placement in, state-run and private institutions. Settlement resulted in
protection of funding for community placements from state-run
developmental centers (DCs), as well as increased case management
for people in DCs and enhanced assessments and information for
people in private institutions.  
• Cota (Brantley) v. David Maxwell-Jolly: Class action lawsuit
against Dept. of Health Care Services challenging cutbacks to
Medi-Cal funded Adult Day Health Care (ADHC) services. The
first preliminary injunction was issued on September 10, 2009
preventing an across-the board cut in Medi-Cal funding from up
to five days to a maximum of three days per week of attendance,
regardless of need.
• V.L. v. Wagner: Class action lawsuit against the Depts. of Social
Services and Health Care Services challenging significant cuts to
the In-Home Supportive Services (IHSS) program based on the
use of functional ranks and functional index scores. The cuts, if
implemented, would reduce or terminate IHSS services to
130,000 Californians with disabilities.
Napper v. County of Sacramento: Class action lawsuit filed
against the County of Sacramento challenging the county’s
decision to terminate provider contracts serving 5,000 mental
health clients and bring all services in-house without
adequate transition planning. A preliminary injunction was
issued on July 21, 2010 stopping the county from
implementing its proposed plan until the Court determines
that clients will continue to receive integrated services to
avoid institutionalization.

-Adapted from Disability Rights California 9/29/10.

• The Department of Justice has a new framework for
Olmstead enforcement: Does the person belong in an
institutional setting in the first place? (Instead of
previous approach of just fixing institutional abuses).

• They are working closely with Centers for Medicare

and Medicaid Services, Housing and Urban
Development & Health and Human Services to bring
federal resources and policies into alignment with the
goals of Olmstead.
• DOJ is also coordinating with the U.S.
Health and Human Services Department
Office of Civil Rights, currently investigating
30 Olmstead complaints and conducting
several statewide compliance reviews.
To Fully Understand the Impacts of the
Developing Olmstead Litigation, Wohlenhaus
Recommends that Advocates Create a
Working Relationship with their local United
States Attorney’s Office.
Questions?
IV. Olmstead Public Policy
Hopes and prayers, the general desire to do good
without knowing how, seem to us frail reeds on
which to lean, though these are the bases on
which many programs are begun.

-Pressman and Wildavsky, Implementation, 1984

 Initial Policy Approaches

1. Utilizing Policy Analysis

2. Refining Cost-Effectiveness Arguments
3. Focusing on Long-term Care Reform
Strategies
 Steps in Policy Analysis
-Eugene Bardach

• Define the Problem

• Assemble Some Evidence
• Describe Potential Options or Interventions
(Including the DO NOTHING Alternative)
• Select Criteria that Will Define Success (Including
Cost-effectiveness)
 • Project the Outcomes of Each Alternative (Including
Consideration of Unintended Consequences)
• Confront the Trade-offs (Sometimes Called a Cost-
Benefit Analysis)
• Decide Between Options
• Communicate Your Analysis in Simple Terms

From A Practical Guide to Policy Analysis, Eugene Bardach (2000). A

handy, short synopsis of these steps may be found at
www.californiansforolmstead.org under Training Documents.
Sometimes advocates do not have access to all of the data to
do our own analysis. In making arguments, though, conduct
as many of these steps as possible. They result in better
solutions to propose as well as more defensible arguments.
We should also look for all of these elements in legislation,
policy proposals, ideas proposed at stakeholder processes.
People who put forth proposals have a responsibility to
analyze, articulate and defend the rationale and the
evidence for their proposals.
A good strategy is to ask questions about the analysis and
reasons behind proposals.
Sound policy analysis that takes into
consideration the law, the public good,
successful outcomes, cost-effectiveness, and
similar considerations leads to policies that
tend to support Olmstead implementation.
Often the most successful strategy is to get
policymakers to do a full and responsible
analysis.
 Moving Beyond “It’s Cheaper” Advocacy

• It is frustrating that government often does

not do the right thing, even when it costs less.
But the ubiquitous claim of advocates that
“it’s cheaper” in all Olmstead conversations
has limitations, and has the tendency to
undermine success.
• Refining advocacy tools will result in better
outcomes.
 It’s Bigger Than That
Paul Longmore wrote that a key principle is “the
claim that people with disabilities have a right to
the means necessary for them to participate in the
community. This principle redefines services and
assistive devices, accessibility and reasonable
accommodations as, not ways of caring for those
who are fundamentally dependent, but alternative
modes of functioning and the necessary means for
social participation and integration.”
“Disability rights advocates also have
campaigned for the establishment for
establishment of these means as enforceable
rights, rather than dispensations of public or
private charity.
Advocates have sometimes argued that funding
community-based living and in-home support
services is less expensive than
institutionalization or nursing home
placement. But more important than that
pragmatic argument, they have asserted not
only the right of people with disabilities ‘to
live in the world,’ but also their right to the
means to make that right effective.”
 Understanding Budget Analysts
• Budget analysts are always working on the budget
and there is never a good time to talk with them.
• If you wish to talk with a budget analyst do not use
words. They do fiscal impacts. Talking about your
good program wastes time.
• Unspoken rules you might encounter:
 The answer is always No.
 If given estimates by program, before you begin work,
add 10% to their costs, cut their savings estimate by 10%.
 Nothing is cost effective.
 Refining Advocacy Strategies
People Living in Institutions:
Covered by ADA and Olmstead (so it’s the law
that they should have the option to live in the
community). It’s also demonstrably more
cost-effective, even through the lens of
budget analysts. There are better outcomes
(so more public good) serving them in the
community. For this population, the key factor
is political will.
 People with Disabilities Living in the
Community

• Covered by ADA. Federal courts have ruled

consistently that the Olmstead decision’s
protections apply to people living in the
community, not just to those already
institutionalized, so also covered by Olmstead.
• However, subject to interpretation of who is at
imminent risk of institutionalization.
• Concerns about “Woodwork Effect.”
Fiscal analysis does not address unmet need,
poor health outcomes, social isolation,
homelessness, poverty, prolonged suffering,
or the inability to “live a life” as intended
under the ADA. Moving beyond “it’s cheaper”
advocacy brings those larger concerns into the
policy arena as legitimate considerations.
 Who Saves?
When talking to policymakers, it is also critical to keep
in mind who will save money from spending money.

State policymakers struggling with a budget deficit may

be less concerned about costs to hospitals, emergency
rooms or local governments. The same is true for
counties who may have increased costs from IHSS
services, but have no fiscal worries if a person enters a
nursing home, where the state pays for costs.
Fiscal analysis is also notoriously grounded in
a 12-month timeframe. In the next 12
months, it may not be cheaper to provide
services, because the impacts of not
meeting people’s needs may be born
mostly by the individual, until poor
outcomes accumulate into fiscal impacts for
government next year, or the year after.
 Extending the Horizon

Extending the vision beyond the current budget is an

essential strategy for advocates. It is also important to
use tools to explain the cost-effectiveness of
prevention.

Mental health advocates have successfully made the

argument that the human and fiscal costs of the “Fail
First” model to access services is far too costly for both
the person and the system.
 So…
“It’s Cheaper” arguments need to be used strategically
and with precision, and they should not upstage the
larger agenda of meaningful disability rights in public
policy advocacy.

Our July 21, 2011 training with Dr. Stephen Kaye will
provide more detailed information about the supposed
“woodwork effect,” how to understand the true cost-
effectiveness of home and community-based services,
and making cost-effectiveness arguments to
policymakers.
 Long-term Care Reform
• “Long-term Care” is not a beloved word in our
community.
• One advocate has described it as “sounding
like a life sentence.”
• It has historically referred to nursing home care
and other institutional care.
• It is being replaced with “Long-Term Services
and Supports”(LTSS) to reflect the inclusion of
home and community-based services.
• However advocates feel about the semantics, we
need to become experts in the financing and
organization of the “long-term care system.”
• It is complicated, thankless, frustrating and often
seems far removed from the needs of the person. But it
is the key to success, the nut that must be cracked for
Olmstead to succeed.
• A good place to start is to make the Mollica-
Hendrickson Report your dog-earred, constant
companion and bed-time reading.
Home and Community-Based Long-Term Care:
Recommendations to Improve Access for Californians

A Project of California Community Choices

Authors: Robert Mollica and Leslie Hendrickson

http://www.chhs.ca.gov/initiatives/Olmstead/Pages/
LongTermCareFinancing.aspx
 Resources for Understanding Long-Term Care Issues

• There is a brief video clip on our website homepage with

testimony by Les Hendrickson to the Senate, outlining
what the state should do about LTC “in a time of no
money.”
• There is a powerpoint presentation by Dr. Hendrickson on
LTC reform strategies at our website under Training
Documents.
• Our June 23, 2011 training, “The Game-Changing
Strategy” will cover LTC issues and opportunities for
change through the implementation of healthcare reform.
 Best Practices to Inform California’s LTC
Reform

• Characteristics of Effective State Long-Term

Care Systems (Washington, Oregon, Vermont)
• Characteristics of Effective County Long-Term
Care Systems (San Francisco)
 The Washington State Model

Washington State began by defining a strong

statement of Vision and Values that guided
the development of the long-term care
system.
 Nine Key Elements Inform a Meaningful
System
1. A strong statement of mission and values to
guide system development
2. A single organizational unit in state
government to plan, develop and operate the
long-term care system
3. Single budget with flexibility and authority to
spend on a varied array of long-term care
services
4. Process for assuring quality oversight throughout the
system
5. Strong and organized stakeholders and advocates
6. A process for resource development that meets
consumer demand
7. Fast, timely and standardized financial and functional
eligibility that generates reliable data
8. Care coordination system with capacity to provide
assistance and oversight for consumers
9. Fair rate setting and contracting process for providers
Washington, Oregon and Vermont, all
known for effective long-term care
systems, all have in common these
recognizable key features of a
“system.”
 Characteristics of Effective County
Long-Term Care Systems
Utilized in San Francisco, Informing in Sonoma and San
Diego
1. Consumer-driven
2. Single Point of Entry (allows quality assurance)
Comprehensive Package of Services that are
Tailored to the Individual and Can Change with His
or Her Needs
3. Seamless Transitions Between Care Settings
4. Package Designed on Assessment, with
Consumer Choice
5. Funding for Services
6. Array of Services
7. Clear Lines of Responsibility and Oversight
Flexibility to Make Changes
 How Having a System Impacts Budget-
Making
• As a result of their effective long-term care system,
Washington state policymakers have confidence that
spending these funds does actually save the state money.
• A Long-Term Care Forecasting Commission makes
estimates, based on solid assessment data, that allows
them to project total need for all long-term care services,
including all home and community-based services.
• The Governor and the Legislature agree without further
ado to put the funding recommended by the Forecasting
Commission into the budget.
 Conclusion
In an era of term limits, Community-Based
Organizations have to become the key engine
for policy development. We must increase our
policymaking capacity to meet this challenge
and create system change to implement the
Olmstead decision for all people with
disabilities in California.
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