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

 

Roadmap for Change

Where We Are: Building on Our Strengths

Like other states, historically, Maine segregated people with disabilities into institutional settings. Services for people with mental illness were offered primarily through two state-operated mental health institutions, the Augusta Mental Health Institute (AMHI) and the Bangor Mental Health Institute (BMHI). Services for persons with mental retardation and developmental disabilities were offered at another state-operated institution, Pineland in Pownal. Many people with physical disabilities had no alternative but to live in nursing facilities because needed services were not available in the community. In addition, many children were denied equal access to an education because schools did not provide the services needed. Children were entering adulthood unprepared to support and take care of themselves, forced to continue a life of dependency.

Over the last several decades, Maine policymakers and public have become more aware of discrimination against people with disabilities. In addition to effective advocacy, public outrage over abuses, class action law suits, sweeping federal legislation, forward looking leadership in Maine government, and budgetary concerns have helped to drive a shift away from institutionalization. Some of the pivotal events influencing Maine’s services include:

As a result of these events, and other pressures, Maine has made significant progress in minimizing segregation and meeting the needs of people with disabilities. For example, Pineland, which at one time could serve 1500 residents, is now closed. Maine is one of only nine states in the country that has closed all state-operated institutions for persons with mental retardation and developmental disability. In 1998, Maine was one of only 19 states providing 70 percent or more of residential services in settings for six or fewer persons. (footnote 6) In 1998, Maine served over 1,300 people under the MaineCare program’s home- and community-based waiver for persons with mental retardation.

AMHI and BMHI in 1958 had an average daily census of 3,400. Consistent with the deinstitutionalization trend in other states, forty years later, the average daily census is 180. (footnote 7) As the inpatient count has decreased, Maine has worked to build the community supports needed.

In 1994, the State tightened the medical eligibility for nursing homes so that only people with the greatest need would be admitted. Over the next several years, Maine reprogrammed state and federal funding to build and support home- and community- services. Between 1995 and 1999, Maine decreased the number of people residing in nursing facilities by 13%, while nearly doubling the number of adults receiving MaineCare and state-funded long-term care services at home. In FY 2001, MaineCare supported 681 adults ages 18 through 64 in nursing facilities. (footnote 8)

In addition, inter-departmental cooperation has made it possible for Maine to significantly reduce the rate of out-of-state placements for children and increase the number of children returning to the state. Between January 1999 and September 2002, the number of children funded by BDS and DHS’ Bureau of Children and Family Services in out-of-state placements decreased by 62%, from 205 to 78. (footnote 9) This progress is expected to continue.

Maine has also increased its vocational rehabilitation services. Over the past ten years, the number of successful case closures has increased, with a shift away from sheltered workshop settings and toward more integrated employment settings. Between 1990 and 1999, the number of successful case closings increased from 350 to over 1,000 per year. In the same period, successful case closings in a sheltered workshop setting dropped from five-percent of all successful closings to less than one percent. The Department of Labor plans to reduce the reliance upon sheltered workshop placements even further.

Thus, as we have noted, Maine has been moving in the direction of community integration for many years. As a result, we are ahead of many states in minimizing reliance on institutions for persons with disabilities. As Maine has transitioned from institutional services, it has built a broad array of community services.

Much of Maine’s progress can be attributed to strong advocates who have been passionate in their commitment to civil rights and access to services for persons with disabilities. Through numerous organizations and initiatives, we continue to build an advocacy community of strong, articulate consumer and family representatives. We have numerous advisory boards, committees, and councils all working toward addressing the needs of persons with disabilities.

We also give credit to our leaders. Many of our leaders have a personal commitment to community integration. Our state government is small, making access to and collaboration among leaders easier. We have a Legislature that listens to the people it represents and responds to their needs. And we are fortunate to live in a state that cares about people, with a supportive press community that highlights disability issues.

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The Road Left to Travel

While much progress has been made, when one compares the general well-being of persons with disabilities with the well-being of persons without disabilities, it is easy to see that there is a long way to go before our vision of equality and integration is achieved. Persons with disabilities are more likely to live in poverty, more likely to be unemployed, and more likely to feel excluded from our society than persons without disabilities. Below we review some of the national and state data that document our continued need to address the barriers to community integration and equality.

Income and Employment

Housing

Transportation

Education

Isolation and Inclusion

Families

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Opportunity for Change

Recent events provide hope and an unprecedented opportunity to build upon and improve the services and public awareness we have now.

The Olmstead decision is the primary reason the opportunity for change is so great. The Olmstead decision has triggered “Olmstead planning” in 40 states across the country. In addition, it has triggered a tremendous amount of activity at the federal level. Under the Clinton administration, the federal government spurred states to respond to Olmstead and backed up its commitment with $64 million dollars in grants, including grants under the Real Choices Systems Change grant initiative. (Previously, the federal government had enacted the Ticket-to-Work and Work Incentives Improvement Act (TWWIIA) with its own array of grants.) The Bush administration has also leant its support to “implementing Olmstead” through its New Freedom Initiative. To that end, ten federal agencies evaluated their policies, programs, statutes and regulations to determine whether any should be revised or modified to improve the availability of community-based services. Through these federal initiatives, increased attention has been focused on housing, transportation and employment resources, in addition to improving and expanding access to community health, mental health and supportive services.

The Olmstead decision provides an opportunity for increasing the level of awareness in the community. Nearly 14 years after the enactment of the ADA, public awareness and support for community integration have grown. Progress toward integration in the schools, which began under state law in 1973 and is now also governed by the Individuals with Disabilities Education Act of 1997, has also helped to increase public understanding and awareness of needed supports and services. The Olmstead decision reinforces this trend by providing another vehicle for pressing the “integration imperative” under these civil rights statutes.

Advances in technology also offer new opportunities for change. An expanded array of technologies, including assistive technology and information technology, permits more people to move from restrictive environments into more integrated living arrangements, with more independence. In addition, advances in information systems technology offer the opportunity for data-driven policy development. The potential to integrate information systems offers the opportunity to reduce the cost of collaboration, reducing one of the barriers to integrated information and referral, integrated services, and integrated funding.

As we consider the opportunities before us, we think, too, about what true lasting change would look like. Transforming the lives of persons with disabilities means transforming the political and cultural landscape, which can create or remove barriers to community integration. In our transformed world:

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Recommendations

While it is ambitious to think about transforming our community’s understanding and responsiveness to the needs of persons with disabilities, we can take some positive steps toward change. With enough political will and commitment from our leaders and community (and united support from advocates), we can begin down the path toward our vision of community integration. We can start with the recommendations below.

Consumer Voice

Organized Consumer Advocacy

Choice and Control

Person-Centered Services

No Wrong Door

Coherent System of Services

Responsive Service Coordination (footnote 40)

Funding & Planning

Waiting Lists

Direct Care Providers

Quality Services

Accessible, Available Transportation

Integrated, Accessible and Affordable Housing

Jobs

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