Jill R. Barker
Ann Arbor, MI
To the Michigan House Appropriations Subcommittee on Community Health
I am the parent of two adult sons with severe developmental disabilities, including severe cerebral palsy and profound intellectual disabilities. I am also president of Friends of the Developmentally Disabled, a Washtenaw County group that provides support and information to families and friends of people with developmental disabilities. Friends of DD is part of ddAdvocates of Michigan, an Internet-based communication network with families and community groups all over the state.
I have strong reservations about Michigan’s proposal to integrate dual eligibles. The lack of consideration for populations whose services are currently managed by the Community Mental Health system could lead to disastrous outcomes. Other state’s have taken a less radical approach to integrating dual eligibles with plans that cause much less disruption to current service arrangements than Michigan’s proposal.
Habilitative mental health services for people with developmental disabilities are non-traditional Medicaid services designed as an alternative to hospitalization or institutionalization. These services can include housing in either licensed or unlicensed settings with varying degrees of support and many specialized services that maintain health, ensure survival, and lead to fulfilling lives in community settings. For people like my sons this care is both necessary and costly.
In the State Proposal that was submitted to the Centers for Medicare and Medicaid last February, the phrase “developmental disabilities” does not appear in the 10-page document. The assumption is that people with DD will be subsumed under Long Term Care that includes senior citizens over the age of 65, a much larger group whose needs are chronically and often tragically underfunded. Combining these populations together and expecting to reduce costs without eliminating services for people with DD and others served by the CMH system is simply not believable.
Where are the savings going to come from, if not from the elimination of services? The Community Mental Health System, though always in need of improvement, already has a managed care system in place for Medicaid-funded specialty services and has done well keeping Medicaid costs under control. Why remove CMH agencies as the managing entity for these special populations and replace them with Medicaid managed-care health plans that have little experience with these populations, especially people with developmental disabilities under 65 years old?
Up to one-third of the people served by the CMH system are dual eligibles and account for up to half the costs of the CMH system. What will be the effects on the CMH system for people who opt out of the state plan and others left in the system? Will it be able to sustain itself under these circumstances and will the expertise and specialization of its employees be unnecessarily lost under this plan?
I worry especially about the loss of local control of decision-making under the state’s proposal. The lack of transparency and accountability of managing entities that have no obligation to include consumers on their governing boards will surely have an effect on the vital role that families now play in assuring the provision of mental health services for their loved-ones. Through their persistence and advocacy, parents and other family members fill in gaps in the service system that allow their DD family members to maintain their health and engage in a meaningful life. Families monitor the care of their loved-ones and establish networks that pass on an enormous wealth of information to people facing problems similar to their own. Relationships with CMH and other community agencies that are fostered by families, can be a check on the service system, making sure that local decisions reflect local priorities and needs, while preventing waste in the system. Most of this is done at no cost to the state. When agencies that local families have to deal with are more remote and less accountable, families become discouraged and their desire and ability to support and improve the system of care is diminished.
In my experience, the most creative solutions to increasing the quality of care without increasing costs to taxpayers comes from local family groups that have marshaled support from local community organizations including churches. For example, in Washtenaw County, the parent-directed Just Us Club serves more than 50 families with a licensed after school childcare program and an activity and respite program for adults with moderate to severe developmental disabilities. Space for the programs is donated by the Washtenaw Intermediate School District and Huron Hills Church in Ann Arbor. Fees to families are kept to a minimum by the parent Board of Directors. Intentional Communities of Washtenaw has been setting up residences for higher functioning adults using “community builders” to assure that DD adults stay engaged in the community with their friends and families. His Eye is on the Sparrow runs a supported living house in Dexter, Michigan, relying on volunteers and families as well as funding through the Community Mental Health agency. Harbor House in Ottawa County for severely disabled adults and many group homes in western Michigan are highly praised by parents and their communities. Encouraging these organizations and following their examples, leads to a higher quality of life for the people they serve.
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