Olmstead v. L.C.: Federal and State Responses

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Olmstead v. L.C. Federal and State Responses

• By Jenifer Urff, JD
• Advocates for Human Potential, Inc.
• Virginia Community Integration Implementation
  Team
• September 24, 2004

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A Brief History of Olmstead v. L.C.

• Title II of the Americans with Disabilities Act
  (ADA)
• no qualified individual with a disability
  shall, by reason of his disability, be excluded
  from participation in, or be denied benefits of,
  the services, programs, or activities of a public
  entity, or be subjected to discrimination by any
  such entity.

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A Brief History of Olmstead v. L.C.

• ADA regulations
• A public entity shall make reasonable
  modifications in policies, practices, or
  procedures when the modifications are necessary
  to avoid discrimination on the basis of
  disability. A public entity shall administer
  services, programs, and activities in the most
  integrated setting appropriate to the needs of
  qualified individuals with disabilities.
  (emphasis mine)
• 28 C.F.R. 35.130(b)(7), (d)-(e)(1)

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A Brief History of Olmstead v. L.C.

• Georgia lawsuit involving two women with mental
  illness and developmental disabilities
• Issue Does medically unnecessary segregation of
  individuals with mental disabilities in
  institutions constitute discrimination under the
  ADA?
• June 22, 1999 U.S. Supreme Court Decision
  Answer is a qualified yes

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A Brief History of Olmstead v. L.C.

• U.S. Supreme Court
• Community placements are required when
• The States treatment professionals have
  determined that community placement is
  appropriate
• The transfer from institutional care to a less
  restrictive setting is not opposed by the
  affected individual and
• The placement can be reasonably accommodated,
  taking into account the resources available to
  the State and the needs of others with mental
  disabilities. (fundamental alteration defense)

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A Brief History of Olmstead v. L.C.

• U.S. Supreme Court
• If, for example, the State were to demonstrate
  that it had a comprehensive, effectively working
  plan for placing qualified persons with mental
  disabilities in less restrictive settings, and a
  waiting list that moved at a reasonable pace not
  controlled by the States endeavors to keep its
  institutions fully populated, the
  reasonable-modifications standard would be met.

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The Legacy of Olmstead Legal Context

• Post-Olmstead litigation
• Half of all federal cases are filed by Protection
  and Advocacy (PA) agencies
• Most litigation focused on people with
  developmental disabilities
• Most integrated setting issues
• Nursing facilities
• Adult care homes (New York)
• At risk of institutionalization (Hawaii, HHS)
• Person-centered discharges to ensure successful
  community integration (Michigan)
• State Medicaid policies
• ADA cases often combined with Medicaid claims
  (esp. reasonable promptness requirement)

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Post-Olmstead Litigation

• A powerful theme that emerges from post-Olmstead
  cases is that courts desire to encourage policy
  change, not unnecessarily insert themselves in
  the change process.
• (Rosenbaum and Teitelbaum, 2004)

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Post-Olmstead Litigation

• Williams v. Wasserman, 164 F. Supp.2d 591 (D.Md.
  2001)
• States response to the goal of community
  integration should be active and visible
  involvement in program restructuring, even if
  reforms take many years.
• Rather than exposing the state to further
  liability if such reforms are not achieved,
  evidence of active engagement and slow progress
  toward fundamental alterations signals the type
  of evolutionary change that the Olmstead majority
  arguably sought to accomplish. (Rosenbaum and
  Teitelbaum, 2004)

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Post-Olmstead Litigation Legal Resources

• Gary Smith, Human Services Research Institute
  (HSRI) http//www.hsri.org/index.asp?idnews
• National Association of Protection and Advocacy
  Systems http//www.napas.org

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The Legacy of Olmstead Policy Context

• Most States already engaged in de-institutionaliza
  tion
• State hospitals beds declined from nearly 700,000
  in late 1950s to about 65,000
• Between 1990 and 2003, Medicaid HCBS waiver
  expenditures increased more than 10-fold (18.6
  billion)
• Percentage of Medicaid long-term care services
  devoted to home and community-based services
  increased from 10 percent in 1990 to 33 percent
  in 2003)
• Among people with developmental disabilities,
  402,000 HCBS waiver participants and 107,000
  ICF/MR residents

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Federal Policy Response

• Dear State Medicaid Director Letters (5)
• Encouraged states to develop plans
• Encouraged consumer participation in plan
  development
• Encouraged quality assurance, improvement, sound
  management
• Complaint-driven enforcement by HHS Office of
  Civil Rights
• OCR played coordinating role in State plan
  development

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Federal Policy Response

• Real Choice Systems Change Grants
• Established by Congress in 2000
• 158 million in grants to states and territories
  to create infrastructure and service options for
  long-term community integration
• In many States, drive Olmstead planning

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Federal Policy Response

• New Freedom Initiative
• Executive Order (June 18, 2001) Requires all
  federal agency to comply fully with the
  requirements of the Olmstead decision
• Money Follows the Person Medicaid
  demonstration to support individuals moving from
  institutions into the community
• NFI Commission on Mental Health Final Report
  (July, 2003) mental health system in shambles

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State Policy Responses

• Comprehensive, effectively working plan
• 29 States have issued Olmstead plans or reports
• 4 States are working on plans
• Several other States have Olmstead task forces
  but do not intend to develop a plan or report
• 10 States are developing follow-up or progress
  reports
• National Conference of State Legislatures (2004)

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State Olmstead Planning

• Common themes
• Emphasize incremental development of additional
  community-based service capacity
• Adequate only if it offers consumers a range of
  options for individualized services
• Fiscal pressures
• Multi-year plans

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State Olmstead Planning

• Process
• Broad stakeholder involvement
• Interagency participation
• Consumer-driven (Virginia)
• Priorities/Recommendations
• Revising assessment tools
• Foster cross-disability assessment approaches
• Identify candidates for community placement
• Quality assurance
• Integrated data collection and analysis

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State Olmstead Planning

• Priorities/Recommendations (cont.)
• Cost-neutral or low-cost activities
• Consumer self-direction (both in existing
  Medicaid waivers and in new waivers)
• Money follows the person initiatives
• Consumer information and outreach

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State Olmstead Planning

• Priority populations/issues
• Developmental disabilities (21 States)
• Mental health (18 States)
• Aging
• Expanding Medicaid waivers (adding slots)
• Demonstration to give frail elderly the choice
  between nursing home care and home- and
  community-based care without waiting for a waiver
  slot (Vermont)
• Work force
• Direct care worker referral registry (Washington)
• Housing

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State Olmstead Planning

• Barriers
• State budget shortfalls/declining State revenues
• Some reports included only no-cost or low-cost
  recommendations (Indiana)
• Rising Medicaid costs
• Institutional bias in Federal programs
• Lack of interagency collaboration
• Stigma
• Housing

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Key Community Integration Measures

• Kaiser Family Foundation review of all State
  Olmstead plans
• Outcomes-based measures
• Transitioning institutional residents to
  community care
• Elimination of waiting lists
• Institutional diversion of persons at risk in the
  community
• Intermediate measures
• Building system and provider capacity
• Investment of resources
• Developing the appropriate tools to reach
  individuals eligible for community placements

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Selected Examples ofState Olmstead Activities

• Interaction with Real Choice Systems Change
  grants
• New HCBS waiver proposals
• Consumer self-direction
• Consumer outreach and education
• Consumer surveys
• Feasibility studies
• Nursing facility transition grants
• Model community for individuals with
  disabilities (Connecticut)

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Selected Examples of State Olmstead Activities

• Reduce waiting lists (esp. for DD)
• Develop Olmstead waiting lists (Illinois)
• Anti-stigma/Olmstead awareness campaigns (North
  Dakota, Idaho)
• Respond to litigation (Hawaii)
• Nursing home transitions (Arkansas)
• Medicaid HCBS waivers
• Goal transitioning 5 percent of nursing home
  population
• Web site development/cross-agency,
  cross-disability, one-stop point of entry

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Selected Examples of State Olmstead Activities

• Integrated data collection
• Workforce issues
• Exacerbated by hiring freezes and early-out
  incentives
• Consumer self-direction to match labor to
  consumer demand
• Legislative action to increase pay
• Housing
• Housing Summits (Iowa)
• New community-based residential slots
• Mental health/behavioral health commissions
  (Nevada)

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Selected Examples of State Olmstead Activities

• Most are not specifically labeled Olmstead
  activities
• Behavioral Health Collaborative (New Mexico)
• Interagency collaborations
• MH and MR/DD (Ohio)
• Departments of Mental Health and Aging re
  nursing home placements (Kansas)
• Evidence-based practices
• Behavioral health (Arizona)

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Olmstead Policy Resources

• The States Response to the Olmstead Decision A
  2003 Update by Wendy Fox-Grage, Barbara Coleman,
  and Donna Folkemer (NCSL 2003)
  www.ncsl.org/programs/health/forum/olmstead/2003/o
  lms2003report.htm
• Olmstead at Five Assessing the Impact by Sara
  Rosenbaum and Joel Teitelbaum (Kaiser Family
  Foundation 2004) http//www.kff.org/medicaid/7105a
  .cfm

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Have other staff members at your agency been
involved in Olmstead Initiative (EO 61)
activities?
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Have you provided updates to your agency head on
the Teams activities?
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Have any EO 61 activities been discussed at any
meetings of your agencys executive management
team?
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Have your role or duties at your agency changed
in any way since EO 61?
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Are people with disabilities and/or their
families considered a core constituency for your
agency?
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Is addressing the needs of people with
disabilities and their families a part of your
agencys mission?
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VirginiaIncluding Consumer Perspectives

• To what extent are the perspectives of people
  with disabilities and their families consulted in
  decision-making within your agency?
• Groups determining policy, direction and
  oversight have members from affected people
  and/or families
• Part of the public sometimes invited to
  participate
• Public hearings/public comment on proposed rules
• Advisory boards/policy councils that meet
  periodically
• Frequently consulted
• Unknown
• Through advocacy organizations

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Virginia Including Consumer Perspectives

• To what extent are the perspectives of people
  with disabilities and their families consulted in
  decision-making within your agency?
• Work groups/task forces/project teams
• Direct staff involvement with consumers,
  families, and advocates
• Direct client services that emphasize client
  participation and choice
• Program evaluations
• On-line Town Hall format to solicit input (not
  helpful)
• Targeted work groups/focus groups

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Including Consumer PerspectivesWhat Works

• Outreach Solicit input, dont just permit it
• Avoid tokenism
• Make participation less intimidating
• People with disabilities are multi-dimensional
• Support advocacy training
• Provide background and briefings
• Model integration hire staff with disabilities
• Joint meeting with ADA Coordinators

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Including Consumer PerspectivesNew Ideas

• Periodic teleconferences
• Steering committee of consumer/clients identifies
  topics, presenters
• Creates a stakeholder community to support agency
  initiatives
• Disability Impact Statement (DIS)
• Modeled after environmental impact statements
• What is the impact of this proposed
  regulation/policy on people with disabilities?

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Including Consumer PerspectivesNew Ideas

• Joint meetings with Olmstead Oversight Advisory
  Committee