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A Roadmap for Change

In February of 2000, in response to the federal Olmstead decision requiring services for people with developmental disabilities in the least restrictive environment possible, the Commissioner of the Department of Human Services created the Workgroup for Community-Based Living. This taskforce was charged with developing “an interdepartmental approach for ensuring that publicly funded services are provided to people with disabilities in the most integrated setting appropriate to their needs and preferences”, and was made up of people with disabilities, family members, advocates, and multiple state agency representatives.

The resulting report, published in October of 2003, identified issues within the systems of care, established core values with which to approach service provision, and named three top priorities:

The Workgroup expressed a vision by and for people with disabilities that still resonates to this day, including in their report items like, “Honoring individual dignity means listening to and respecting each person’s dreams and aspirations and respecting each person’s right to make choices” and “Services must be accessible, affordable, and available. They should be flexible enough to meet the changing needs of each individual as their needs change.” The report’s recommendations included items that we have seen debated across the history described in this timeline, including more choice and self-determination, better coordination across the system of services, and more support of and training for direct service workers.

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Study vs. Action

Study vs. Action

Systems are slow to change – when complicated policies are built over years based on societal assumptions and bureaucracies arise that give power to certain groups and leaders, the status quo is often seen as both better and easier than trying something new.

When faced with intractable systemic problems, the people who administrate those systems can be cautious in the face of calls for reform. A common step is to create a taskforce or commission a report to study the issue and bring back recommendations.

While careful evaluation of problems and potential solutions is important, much too often the movement forward ends there. Caring people with years of experience take months or years to develop detailed plans and recommendations, only to see those reports gather dust while policymakers argue over details and funding and implementation.

Here are some of the reports that have been funded by our legislature in the last few decades, filled with plans that have never been executed:

1973 – Report to the Appropriations Committeewith Recommendations to Adopt Basic Policies to Guide the Appropriation of State Funds for Social Services

1980 – Long Term Care Dilemmas – Perceptions and Recommendations

1996 – Report of the Assisted Living Task Force

1997 – Final Report of the Commission to Determine the Adequacy of Services to Persons with Mental Retardation

2003 – Roadmap for Change: Maine’s Response to the Olmstead Decision – Work Group for Community-Based Living

2008 – Final Report of the Blue Ribbon Commission to Study the Future of Home-based and Community-based Care