Should Maine expand Medicaid or fund the waiting list? That seems to be the question.

It is a strange question, however, from the point of view of the Maine Developmental Disabilities Council. It’s like asking if insurance should provide coverage for dialysis or for heart valve replacements. It’s not an either/or question and, frankly, pitting one vulnerable population against another one is not helpful or productive for any of those involved.

Expanding Medicaid to those in poverty without health insurance would, for many, provide the medical care they need to prevent serious health issues leading to disabilities. The evidence makes it abundantly clear that ensuring people have access to health care reduces long-term costs.

The solution is to expand Medicaid, while at the same time creating higher paying jobs that provide insurance so people don’t need to access the expansion.

Individuals who are on the waiting list for developmental disabilities waiver services at the level of priority one, or adult protective status, are at real risk of harm to health and safety. Some of the people who would benefit from Medicaid expansion are people with developmental disabilities who are not eligible for other services. One of the clearest similarities between the population who would benefit from the Medicaid expansion and those on the waiting lists is that both populations need the services. For the most part, however, that is where the similarities stop.

The Maine Developmental Disabilities Council wants all individuals with developmental disabilities to receive the services that they need. In 1996, Maine closed its institution for people with developmental disabilities. As one of the first states to close its large institution, Maine didn’t have a lot of models for providing community services for people with developmental disabilities. Maine did the best it could by developing community services through a variety of models, ranging from individuals with developmental disabilities living in provider-owned group homes to supporting people with developmental disabilities living in their own homes.


The cost of the services could be very expensive and, because of budget constraints, reimbursement amounts to providers have been slowly reduced over the past decade. The need for developmental disability services has increased at the same time as the ability to pay for and deliver those services has sharply decreased.

The state couldn’t afford to serve everybody in need of services within the current system so it created a waiting list.

The question, therefore, becomes: How do we obtain enough money to serve everybody who is eligible and in need of the service?

Are the conversations happening in the State House regarding the expansion of MaineCare yielding a sustainable answer? Unfortunately, no.

If only there were simple answers. In order to adequately serve people with developmental disabilities in Maine, we need to analyze our system of services to find methods that would serve more people at lower cost. This is easier said than done, of course. Those receiving services today might be afraid of how changes would affect their future and security, and those delivering services might fear for the security of their jobs. It is easier and more comfortable to stay within the current system, but it is not more sustainable.

What needs to happen is for stakeholders to put the fear of change on the shelf and come together to discuss a new model of services. That is just the beginning.


Let’s say this happens and all the stakeholders agree on a new model. The state then will have to apply to the federal government for a new type of waiver. Rules will have to be written and promulgated. Enrollment processes will have to be developed and quality assurance methods defined. All the while, existing services must be maintained with the eye toward a brighter future. This will be a long and arduous process that the council hopes to embark upon with stakeholders.

The question about whether to expand Medicaid or to fund people from the waiting list is not really the question we need to answer. On the surface it is compelling, but dig deeper and we find that the issues are unrelated. A couple of years ago, the state decided to limit the number of childless adults living at or below the federal poverty level of income who could be enrolled in MaineCare. At the same time that the number of people on MaineCare was being reduced, the waiting list continued to increase.

The Maine Developmental Disabilities Council encourages our government to tackle the real questions. How do we provide a sustainable service model for people with developmental disabilities and ensure that those who need health care can access it? Unfortunately, for at least the waiting list issue, the answers are likely beyond any current elected official’s term. However, despite how daunting it may seem, we urge our leaders at the State House and Blaine House to stop comparing apples and oranges and to instead support and work together to encourage people to gather and develop a model of providing services that meets the needs of all Mainers with developmental disabilities.

As for Medicaid expansion, the council hopes that it is approved. After all, keeping people healthy ultimately will allow more of us to continue working and paying taxes, and that will save money for all of us in the end.

Nancy Cronin is executive director of the Maine Developmental Disabilities Council.

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