This Coalition began in May, 2006, formed by a group of parents of children with special needs. Ultimately, the goal of the Coalition is to create a system of quality housing and personal supports that is person and family centered, with choice and dignity being at the forefront of efforts.

History
Organized by Community Housing of Maine and the Center for Community Inclusion, the initial focus was on finding ways to improve the quality of services to this population. A common thread for parents was, that of the money billed to Medicaid for services, the vast majority appeared to be going into service provider organization overhead, and only entry level wages were devoted to actual service providers. These wages seemed to be creating secondary problems with care givers with lack of experience and/or skills, and rapid, unpredictable turnover as workers abruptly left to pursue jobs paying slightly higher wages. That left constant abandonment patterns for the recipient of services, and scheduling and logistical nightmares for parents.

Parents, advocates, and service providers attended the first two meetings on May 25th and June 22nd, designed to explore alternatives in service provision, including Micro-Boards and High Fidelity Wrap-round Services. A Vela Micro-Board is a concept in practice in parts of Canada and the US whereby typically relatives, friends, and other interested parties including the consumer form a Board of Directors around the consumer him or herself as a 501 (c)(3) non-profit, making decisions over the consumer’s lifetime as to strategies for service provision, modalities of treatment, and ultimately hiring and overseeing the selected direct service or care provider. High Fidelity Wrap-Around Services have been modestly embraced by DHHS in Maine, and are somewhat similar in creating individualized, personalized teams including the consumer formed around the consumer without the non-profit incorporation process, and though they help direct funding decisions, centralized hiring, supervision and other employment functions on behalf of the consumer, funding is not in the group’s complete control, and this model lacks the lifetime focus sought by Micro-Boards.

A third meeting was scheduled for July 13, but was postponed because although the concept of improving service provision clearly resonated with the group, more pressing to the parents involved was concern about special needs housing. Organizers broke to formulate strategies to elicit special needs housing resources, and the group was brought back together with a renewed focus on October 23.

Housing Advocacy as First Priority
This time the purpose was to create a mechanism for developing supported housing for people with disabilities, with service quality improvement a secondary priority. The group analyzed the current housing climate for transitioning youth and adults with disabilities, and then set out to address the utter lack of funding for special needs housing in Maine. They began a letter writing campaign directed at the Maine State Housing Authority (MaineHousing) to urge that a portion of funds be allocated from the State Home Fund for this purpose. This would be in keeping with the historic pattern of funding allocations where various special needs populations including homeless were the focus, but different than the past two years where the entirety of the diminished resources had been devoted to housing for homeless populations.  The group now included a fast-growing vast majority of parents, along with representatives from Community Housing of Maine, DHHS, the Center for Community Inclusion & Disability Studies, residential and community support providers, and advocates.

The letter writing campaign initiated at that meeting continued through December, and excitement about this ultimately fueled broader communication through a disjointed network of advocacy groups via various list-serves throughout the state. Soon, some 4000 parents, service providers, and advocates were made aware of this advocacy effort and the letters began to pile up at Maine Housing. Some 40 letters had been received by MaineHousing and policy change appeared imminent by the time the Coalition met on November 30.

At that meeting, the energy continued and the Coalition decided to pursue additional strategies aimed at ensuring resources were available for supportive housing creation for people with special needs. The group confirmed their prioritization of housing first and service quality improvement second. A strategy of a letter writing campaign to the Governor was devised after it was understood that the source of State Home funding, the Real Estate Transfer Tax, originally designed to allocate funding to affordable housing through the HOME Fund (Housing Opportunities for Maine), had been moved to fill general fund gaps by the Governor since early in his term. The Governor had made commitments to a variety of groups about fully restoring this fund, and the Coalition decided to urge that he did exactly that. This letter writing campaign began the week of the 11th of December and is expected to yield a flurry of letters. Community Housing of Maine has dovetailed this effort with advocates and service providers for homeless populations to increase the volume of letters received by the Governor.

Next Steps
The Coalition will meet again on January 8th from 11 – 3pm in Portland in the DHHS building at 161 Marginal Way, conference rooms A and B. The group will conduct strategic planning at that meeting.

This Coalition is ultimately focused on pursuing action steps for quality services and housing as the name implies. It is meant to be a consortium of interested parties including those from other advocacy groups interested in these two issues. It is inclusive, and all interested parties are invited to attend or to participate through the email list serve. For more information, please contact Cullen Ryan, Executive Director of Community Housing of Maine, cullenr@maine.rr.com or 879-0347.

Housing is a pressing concern for parents all around the state, especially given the lack of resources at this time. By pulling together as a collective voice, current policies can be improved. Please consider being a part of this Coalition.

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