# Presentation: 520609

## The Olmstead Decision: State Responses and its Implications for Public Health and Law 

- Kim McWhorter
- ORISE Fellow – CDC Public Health Law Program
- MPH Candidate Emory University

## Overview

- Olmstead v. L.C.
- The public health and mental health connection
- General Olmstead Responses
- Unique Olmstead Responses
- Legal Implications
- Future implications

## Olmstead v. L.C.

- July 1999
- Interpreted Title II, ADA
- “in the most integrated setting appropriate to the needs of qualified individuals with disabilities”
- Holdings limited to individuals with mental disabilities
- Executive order included all Americans with disabilities (Executive Order #13217)

**Notes:**
2 GA women whose disabilities include MR and mental illness; both were receiving care in a state run facility at time suit was filed, despite the fact that their treatment professionals believed they could be appropriately served in a community-based setting
Case Facts:
LC & EW are mentally retarded women; LC dx w/schizophrenia, EW w/personality disorder
LC voluntarily admitted to GA Regional Hospital where she was confined for tx in a psych unit; LC’s tx team agreed that her needs could be met appropriately in one of the community-based programs the state supported
Despite this evaluation she remained institutionalized for 3 years before the state finally placed her in a community-based program
EW was voluntarily admitted to the GRH where she was confined to tx in a psych unit. The state sought to discharge her to a homeless shelter, but abandoned that plan when her attorney protested; her treating psychiatrist concluded she could be appropriately treated in a community-based setting
EW remained institutionalized until a few months after the district court handed down its decision
LC & EW alleged that the proscription of discrimination under title II of the ADA requires placement in community settings rather than insitutions
under the Americans With Disabilities Act (ADA) unjustifiable institutionalization of a person with a disability who, with proper support, can live in the community is discrimination 
LC & EW are being discriminated against because in order to receive needed medical services they must relinquish participation in community life – persons w/out mental disabilities can receive the medical services they need without similar sacrifice
Challenges federal, state and local governments to develop more opportunities for individuals with disabilities through accessible systems of cost-effective community-based services

Title II ADA: The Olmstead decision interpreted Title II of the Americans with Disabilities Act (ADA), which gives civil rights and protections to individuals with disabilities and guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications. 

- Ginsburg:
- 	“States are required to place persons with mental disabilities in community setting rather than in institutions when the state’s 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”
- ADA does not require that community-based treatment be imposed on those who oppose it
- State compliance entails working plan and waiting list to move individuals to less restrictive setting

**Notes:**
States are in compliance if it demonstrates that it has a 
		“‘comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that move[s] at a reasonable pace not controlled by the state’s endeavors to keep its institutions fully populated”

## Summary of Olmstead Implications

- Provide services in the most integrated, appropriate setting
- Community treatment is preferable to treatment in an institution
- Must be reasonably possible (fiscally and programmatically) for the state to provide community placement
- States are required to provide community-based treatment if appropriate and not opposed by the person with a disability

**Notes:**
Under the Court’s ruling, certain principles have emerged:
-unjustified institutionalization of people with disabilities is discrimination and violates the ADA;
-states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when the state’s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated, taking into account resources available to the state and the needs of others receiving state-supported disability services;
-a person cannot be denied community services just to keep an institution at its full capacity; and,
-there is no requirement under the ADA that community-based services be imposed on people with disabilities who do not desire it. 
The Court also said that states are obliged to "make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity." Meeting the fundamental alteration test takes into account three factors: the cost of providing services in the most integrated setting; the resources available to the state; and how the provision of services affects the ability of the state to meet the needs of others with disabilities.

## New Freedom Initiative

- Initiated in 2001
- Increasing access to assistive and universally designed technologies
- Expanding educational and employment opportunities
- Promoting increased access into daily community life

**Notes:**
February 2001
Federal plan for disability services, inspired by Olmstead Decision
Real Choice Systems Change grant program (helps states implement Olmstead Decision)
The New Freedom Initiative (NFI) was announced by President Bush on February 1, 2001, followed up by the Executive Order 13217 on June 18, 2001. The initiative is a nationwide effort to remove barriers to community living for people of all ages with disabilities and long-term illnesses. It represents and important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, choose where to live and participate in community life.

## Why are mental health issues important to CDC? 

- Link between mental health and physical health
- Risk factor
- Vulnerable populations
- Large public health issue that affects the broader community

## General State Olmstead Responses

- Broad-based education and dissemination of information
- Services in home and community-based settings
- Well-coordinated programs
- Simplified access to services
- Self-direction
- Funding

**Notes:**
Self-direction = encouraging individuals to take responsibility for themselves and their future
Lack of public education about available options
Lack of affordable and accessible housing
Lack of assistance to people with disabilities to help overcome fear, lack of experience, stigma and the lasting effects of institutionalization or discrimination
Lack of adequate and accessible supports in the community
Lack of a sufficiently large, competent and adequately compensated workforce

## Education and Dissemination of Information

- Education of family members/caregivers about community-based services
- Emphasize consumer choice
- Family directed care
- Informed choice
- Increasing outreach

**Notes:**
Emphasize consumer choice by enabling individuals to receive the types of services they desire in the location they prefer
Consumer and family directed care with supportive and flexible funding
Increasing outreach to inform people with disabilities about community options

## Services in HCB Settings

- Moving nursing facility residents into the community
- Integrate self-determination concepts into the LTC system
- Increase capacity of community-based programs

## Improvements in the LTC Workforce

- Increased training for service professionals
- Create incentives for people to become community-living support and personnel
- Innovative ways to find, hire and retain caregivers for LTC services
- Caregiver compensation

**Notes:**
Examples of incentives: improved benefits, higher wages, training

## Well Coordinated Programs

- Continuum of community integrated services
- Housing
- Employment
- Transportation

**Notes:**
Housing:
Aid individuals in finding housing
Improve availability of accessible and affordable housing
Fund housing location and placement services for people with disabilities
Maximize federal housing programs
Promote universal designs in new construction
Tax incentives
Employment:
Employment placement strategies
Remove barriers to employment for people with disabilities
Transportation:
Bring all state-funded fixed-route (bus, subway, ferry) transportation service in compliance with ADA access requirements
Funding for non-medical transportation for people making transition into community

## Simplified Access to Services

- Aggregate information systems
- Electronic databases of available services
- System for ensuring timely and appropriate community placement
- Identifying and assessing waiting lists and developing guidelines for the movement in each program area
- Ongoing monitoring and reporting mechanism

**Notes:**
Aggregate information systems making community-living opportunities and resources more accessible
Electronic databases easily accessible by consumers, providers and family of available service throughout the state; System for sharing accurate, current and responsive information about the availability of services for people who are seeking assistance to prevent the untimely loss of independence for a disabled person, due to the lack of knowledge about available options

## Funding

- Establish new revenue sources
- Community-waiver programs
- Additional Medicaid waiver slots
- RCSC Grants
- Nursing Facility Transition Grants

**Notes:**
Community waiver programs: increased funding for community-based programs and services, housing integration and community-based coordination of care
Expansion of waiver programs: by increasing state general funds for Medicaid

Real Choice Systems Change Grants: These grants support infrastructure changes that will result in effective and enduring improvements in community long-term support systems. 

## Unique State Olmstead Responses

- Education
- Self-determination
- Staffing
- Transportation
- Housing
- Accessibility
- Funding

**Notes:**
Increase adult protective services and ombudsman networks to ensure individuals in the community are free from abuse, exploitation and neglect
Comprehensive, state-wide crisis intervention and support system developed to prevent unnecessary institutionalization
Develop a complaint system for in-home care similar to an ambudsman program

## Education

- Public education campaign (Hawaii)

**Notes:**
Public education campaign to reduce ignorance and prejudice toward people with disabilities

## Self-determination

- Peer support network (Connecticut)
- Train consumers on how to coordinate, negotiate, purchase, direct, hire and fire attendants (Missouri)
- Increase adult protective services and ombudsman networks (Montana)
- Crisis intervention and support system (South Carolina)
- Complaint system (South Carolina)

**Notes:**
Develop a peer support network for those who are making the transition from living in institutions to living in the community
Increase adult protective services and ombudsman networks to ensure individuals in the community are free from abuse, exploitation and neglect
Comprehensive, state-wide crisis intervention and support system developed to prevent unnecessary institutionalization
Develop a complaint system for in-home care similar to an ombudsman program

## Staffing

- Interim pay to PCAs (Arizona)
- Professional liability insurance for community-living support personnel (Hawaii)
- Olmstead training for state agency and provider staff (Missouri)
- Personal care assistant registry (New Jersey)
- Career ladders (Ohio)

**Notes:**
Provision of interim pay to personal care attendants when the consumer is out of the home (e.g., hospitalization)
Public-private partnership to provide professional liability insurance for community-living support personnel
Develop statewide Olmstead training for state agency and provider staff that encourages networking and other continuing education credits
Create demonstration projects to examine career ladders

## Transportation

- Partnerships to provide fixed route and flexible scheduling opportunities (Mississippi)
- Labor and mileage reimbursement to friends and family (South Carolina)

**Notes:**
Develop/establish partnerships between program/service providers to provide consolidate fixed route (mass transit) and flexible scheduling (personal mobility) opportunities
Labor and mileage reimbursement to friends and family who provide transportation for consumer and family choice, control and autonomy

## Housing

- Educate about accessibility (Connecticut)
- Coverage of home modifications, home repair, special medical equipment and supplies and assistive technology by waivers (Mississippi)
- Sufficient reserve bed capacity (South Carolina)
- One-time home modification grants (Texas)

**Notes:**
Educate architects, housing authorities, builders and local boards about accessibility (Connecticut)
Expand menu of services of current programs and waivers to include: home modifications, home repair, special medical equipment and supplies, and assistive technology
Sufficient reserve bed capacity to maintain for 90 days for re-admission of peoplewhose community placement has not been successful
One-time grants to families who need to make a home modification to care for children with disabilities

## Accessibility

- State contracts with “gate-openers” (Hawaii)
- Multiple attempts at community reintegration (Illinois)
- Olmstead coordinators at state-operated psychiatric hospitals and intermediate care facilities (Kentucky)
- “Choice letter” for LTC residents (Maine)
- Pre-screen for possibility of CB care (Massachusetts)
- Monitor and document (Missouri)
- LTC insurance promotion (Tennessee)

**Notes:**
State contracts with “gate-openers” to assist candidates for community-based living with making the transition into the homes of their choice
Allow more than one chance for successful community reintegration after nursing home or mental health placement
Olmstead coordinators at state-operated psychiatric hospitals and intermediate care facilities – responsible for community placement activities at each facility and work collaboratively with facility, client, potential supports for community living providers, family members, guardianship and representatives of protection and advocacy
State assessment of LTC residents living in institutions, residents sign “Choice letter” to remain in facility rather than be placed in community; develop similar assessment tool for other disability groups
Require that all state agencies offering LTC pre-screen Medicaid eligible beneficiaries seeking facility-based services for the possibility of community-based care
Document why waiting list is longer than 90 days and monitor all waiting lists
Long-term care insurance promotion with public and private employers

## Funding

- Transition funds (Maryland)
- Ohio Success Pilot Program
- Income disregards (Massachusetts)

**Notes:**
Establish transition fund to assist individuals who move from private facilities to the community
Ohio Success Pilot Program - $2,000 in transition costs for 75 people in 2002, 125 in 2003; used as seed money for first month’s rent, utility deposits, moving expenses and other related costs
Implementation of income disregards in determining eligibility for PCA services to include people 65 and older

## Legal Implications

- Professional liability insurance (place cap on liability)
- Medicaid Waivers
- Housing Policies
- Increase in Olmstead-type lawsuits

## Examples of State Legislation

- Colorado (2002: HB 1039)
- Colorado (2002: HB 1067)
- New Hampshire (2001: HB 350)
- Maine (2002: HB 1574)
- Maryland (2002: HB 752)

**Notes:**
Colorado (2002: HB 1039) – authorizes creation of a consumer-directed care program that allows elderly people to receive a direct payment through a voucher to purchase qualified services
Colorado (2002: HB 1067): creates a state-run family caregiver support program supported by federal funds authorized for this purpose. The program would provide information, counseling, training and respite care services, primarily for caregivers of frail elderly individuals, but also for grandparent caregivers of children related to them
New Hampshire: legislation approved a Work Incentive Program that will allow people with disabilities to purchase Medicaid coverage if they are employed and their income makes them ineligible for Medicaid
Maine (2002: HB 1574): implemented state-funded and Medicaid-funded, consumer-directed personal care assistance services for adults with disabilities; family members can be care attendants and there is a limited respite benefit
Maryland (2002: HB 752): requires that social workers provide to nursing facility residents a one-page information sheet that explains the availability of services under the HCB waiver programs, explains that the resident’s care is partially or fully reimbursed by the program, and provides information regarding the referrals to residents that may provide additional information; must be updated, prepared and distributed upon admission, discharge and at least annually upon request

## Examples of Lawsuits

- The Arc of Delaware v. Meconi
- Bradley Tinder v. Illinois Department of Public Aid
- Ball v. Beidess (AZ)
- Fisher v. Oklahoma Health Care Authority

## Future Implications

- Continued legislation & lawsuits
- Decreased hospital/institution-based services
- Increased Medicaid burden