Commissioner Mary Mayhew’s op-ed concerning services for persons with intellectual disabilities and autism is misleading in multiple ways (“LePage administration committed to Maine’s disabled, DHHS chief says,” Dec. 8). Four of them are too important to ignore.

As a matter of full disclosure, we have been working on these issues since 1998, representing both disabled individuals and their families or guardians and, currently, providers whose ability to serve disabled individuals is in the process of being dismantled by the Maine Department of Health and Human Services. Despite our acknowledged role as advocates, we also think we know something about the situation.

Other states do not provide the same or similar services to their citizens with intellectual disabilities and autism. Many states, unlike Maine, continue to operate institutions or institution-like facilities where the citizens with the greatest needs, and the highest costs, are either warehoused or cared for in ways quite different from the home- and community-based system in Maine. In those states, the citizens being served in the community in group homes generally tend to be the least costly to serve, and those states’ statistics are not comparable to those in Maine.

As the Telegram’s excellent story reported, David Braddock’s study at the University of Colorado – which is not a piece of advocacy – shows that Maine’s investment in quality services, including community inclusion, is declining. This occurs, of course, at a time when the minimum wage is rising and health care costs continue to escalate, leaving providers trapped in a situation of declining revenues and increasing costs.

The details of all of this are too complicated for this piece or even for the Telegram’s detailed account. It is simply not true for the commissioner to say or suggest that the LePage administration is providing better services to more people with disabilities for less money. This administration’s effort to drive Maine’s cost toward the median can be accomplished only by hollowing out the quality and quantity of services provided to this population.

In 2007, based on cost data from 2001 to 2005, a nationally recognized expert with experience in the Maine system developed a methodology designed to set rates that are sufficient to ensure an adequate network of providers. The cost data inputs have never been updated to reflect inflation or any other change in circumstance.

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Nevertheless, without any rationale or explanation for the basis, the rates actually paid to providers have declined on an inflation-adjusted basis by 31 percent, beginning not long after the U.S. District Court terminated the consent decree that governed services for persons with intellectual disabilities and autism.

The methodology developed in 2007 recognized the individualized differences in the needs of intellectually disabled adults and included three adjustments or factors intended to make the rates suitable for people with different characteristics, circumstances and settings. Two factors involved exceptional medical needs and behavioral challenges.

A third factor recognizes that an hourly rate is an imperfect proxy for appropriate compensation where, for one reason or another, staff availability or special circumstances would result in a provider’s inability to fully staff every service for all the residents of a given home 100 percent of the time. The methodology allows billing for the full authorized amount, as long as service delivery equaled or exceeded 92.5 percent of the total authorized.

The commissioner’s talking point is that, under this third factor, providers have been paid for services not performed. This talking point disregards the fact that the computation of an amount of any payment, as a function of time and dollars per unit of time, requires some conventional calculation methods to reach a fair outcome.

The threatened rate reduction is accomplished by tinkering with one of the internal features of the methodology to eliminate a factor designed to accommodate the uncertainties and unpredictability inherent in this kind of work.

Commissioner Mayhew claims that there is no wait list for Section 29 services. The delay is still there; only the published list has been eliminated.

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Section 29 services are provided to eligible individuals on a first-come, first-served basis. The period of time an eligible person has to wait for services is now at least four months and growing. The DHHS maintains an unpublished list of people waiting for services. The department calls this list a “queue” instead of a “wait list.”

When young people exit the school system, they have no services available to them. While they wait for services in the queue, they begin to lose the skills they acquired in school. The family’s ability to care for their family members is strained. When a person is eventually admitted to service, the intensity and expense of support required has increased

Finally, the Section 21 wait list grows even as additional citizens are added to the service system. There should not be any wait list. Rationalizations about how large it is or how long it takes to move a citizen in need off the waitlist are markers of failure, not success.

Overall, Maine did indeed have one of the best systems in the country. Now it seems that Commissioner Mayhew and Gov. LePage mean to correct that by joining the race to the bottom being led by other states.


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