Roadmap for Change: Maine's Response to the Olmstead Decision
a report prepared by Maine’s Work Group for Community-Based Living

The Work Group

Who We Are
The consumer and state staff representatives who have contributed to Maine’s Work Group for Community-Based Living include current and prior members.

Who We Represent

All people are affected by disability. Whether or not we know it, we all have or know someone who has a disability. (footnote 2) According to the 2000 U.S. Census, almost one out of every five persons living in Maine has a disability. In Maine that represents about 224, 400 people. (footnote 3) It might be our elderly grandmother who can no longer live on her own or the homeless man we drive by every morning on the way to work. It might be the little girl down the street born with Down Syndrome or a spouse injured on the job. It might be our teen-aged son who was expelled from school because of substance abuse, or a co-worker concealing a mental illness because she’s afraid of the stigma others attach to it. Or it might be us, because we have a chronic illness, a hearing or visual impairment, or some other condition that falls within the scope of the Americans with Disabilities Act (ADA).

If we do not have a disability now, there is a good chance that we will in the future. According to one estimate, at birth a person with a life expectancy of 75 years will spend 12.8 of those years with some degree of activity limitation. (footnote 4)

Under the ADA, the term "disability" means "a physical or mental impairment that substantially limits one or more of the major life activities of [an] individual; a record of such an impairment; or being regarded as having such an impairment." (footnote 5) Within this definition fall an array of different types of disabilities, including addiction disorders, chronic illness, developmental disabilities, mental illness, physical disabilities, sensory impairments, and traumatic brain injury.

Our ability to estimate how many people have a disability or how many people have a particular type of disability is limited. And perhaps that is a good thing, because numbers can prevent us from intimately knowing the uniqueness of each and every person with a disability: each person’s needs, hopes, dreams and expectations that are as profoundly worthy as our own, but so much more difficult to hold because of a disability. From the point of view of the individual, disability rights improve lives one person at a time. The most important number, in a sea of numbers, is one.

Our Mission

The Work Group was formed to develop a coherent plan, across departments and programs, to make certain that the State is providing services to people with disabilities in the most integrated setting appropriate to the needs and preferences of each individual.

The Work Group was convened in response to the Olmstead decision. LC. v Olmstead is a 1999 U.S. Supreme Court decision holding that unnecessary segregation of persons with disabilities is discrimination under the Americans with Disabilities Act (ADA). The Supreme Court said that a state must provide community services to qualified individuals when:

• the treating provider believes it is appropriate;
• the affected client (or authorized representative) does not oppose it; and
• the placement in the community can be reasonably accommodated taking into account the resources available to the state and the needs of others.

A state can show that it is complying with the ADA if it has:

• a comprehensive, effective working plan for placing qualified persons with disabilities in less restrictive settings; and
• a waiting list that moves at a reasonable pace not controlled by the state’s endeavors to keep its institutions fully populated.

As discussed in the previous section, the principles underlying Olmstead apply to all people with a disability, as defined under the ADA, who are institutionalized or are at risk of institutionalization (including in a nursing facility, treatment facility or other restricted settings). The ADA protects people with any type of impairment that “substantially limits one or more of the major life activities,” including a physical disability, a mental illness, a developmental disability, a chronic illness, an addiction disorder, blindness, and deafness. All state or other publicly funded institutional or home and community-based services offered to people with disabilities are subject to the Olmstead decision.

Maine is far ahead of many states in providing community alternatives to institutionalization. Yet we continue to face many challenges in achieving the vision of sustainable, fulfilling participation in community. Seeing the Olmstead decision as a catalyst for a comprehensive, thorough evaluation of the State’s capacity to maximize community integration, the Work Group was asked to develop a vision for improving home and community services.

Starting in February 2000, state representatives from five departments began working on Maine’s response to Olmstead. These five departments include the:

• Department of Human Services (DHS);
• Department of Behavioral and Developmental Services (BDS);
• Department of Education (DOE);
• Department of Labor (DOL); and
• Department of Corrections (DOC).

In May 2000, these five departments joined with consumers, family members, and advocates to form Maine’s Work Group for Community-Based Living. Since that time the Work Group has met monthly, with numerous additional Sub-Group meetings in between.

Focusing on community services, we identified and prioritized areas of focus and divided into three Sub-Groups to address those areas. In particular, we focused our energy on:

• access to services;
• inter-departmental coordination; and
• workforce development.

The reports in the later half of this document are the products of those Sub-Groups. In addition, we also developed recommendations for improving access to:

• housing;
• transportation; and
• employment.

What We Believe: Our Vision

In developing a coherent, inter-departmental plan for home and community-based services, we are guided by our vision of ultimate success:

All of us together in community with equality in rights and dignity, in pursuit of happiness and fulfillment.

Central to our ability to achieve our mission is the common understanding of the core values and agreement as to how those values operate in real life situations. Our values are the standard against which we will measure the Olmstead plan we develop.

We believe in honoring the dignity, equality and value of each individual.

Honoring individual dignity means listening to and respecting each person’s dreams and aspirations and respecting each person’s right to make choices. It also means supporting people in finding their voices, speaking for themselves, and attaining their full potential in all aspects of their lives. Every person is unique in personality, abilities, needs and aspirations and is imbued with personal power and responsibility.

Family and friends are the most valuable resource we have in supporting persons with disabilities. The contributions they make should be honored and their needs addressed.

We believe that true choice can only be exercised if people are given information and opportunities.

The right to make choices means the right to choose where and how to live, and with whom. We believe that true choice can only be exercised if people are given information and opportunities. Our government has a responsibility to open the door to choice by providing the services and information that make informed choice possible.

We believe in services that meet people’s needs.

Services must be accessible, affordable, and available. They should be flexible enough to meet the changing needs of each individual as their needs change. Barriers to services should be eliminated. Services should promote equal dignity and rights and equal opportunity for a happy and fulfilling life in the community. Services should be offered in a way that not only permits but encourages people to maintain control over their lives, including maximizing the use of voluntary services. Each person’s voice must be heard and all decisions and planning must reflect what is most important to the individual, and, when appropriate, supportive family and friends. Caregivers are an integral part of quality services.

We believe that people with disabilities have a right and a need to organize as and within groups so that their voice may be heard in the public process.

Every day there are policy decisions made that have an impact on our lives. Yet people with disabilities have historically been excluded from the political process through architectural and communication barriers, stigma, and other limitations. In addition, they have been unable to leave institutions and their homes to go to the places where voting, debates, educational or other political events occurred. By joining in groups, people with disabilities will gain the information, education, and confidence to assume their rightful place in protecting their rights and these values.

We believe that community integration for individuals with disabilities is achievable.

Community integration requires attention not just to services, but to attitudes as well. The responsibility for achieving this goal falls not just on government, but on our society as a whole, indeed, on each one of us.