We are parents of sons and daughters with intellectual and developmental disabilities. Along with fellow parents Debbie Dionne of Topsham and David Cowing of Woolwich, we thank you for your fair article in the Dec. 4 Maine Sunday Telegram, “Maine used to be a leader in caring for adults with intellectual handicaps. What went wrong?”

Because of their disabilities, our sons and daughters require hours of services every day to ensure their safety, the safety of others and a quality of life worthy of human dignity. Unfortunately, because of continued rate cuts and service reductions, our children are at risk of losing the critical support they need.

In Commissioner Mary Mayhew’s published response and in other interactions, the Maine Department of Health and Human Services refers to families like ours as uninformed, frightened and manipulated by our providers.

We don’t need our providers to tell us that the system is underfunded when staff doesn’t stay for more than five or six months because the pay is too low. We don’t need our providers to tell us that the system isn’t working when we see our children lose skills and become increasingly anxious because of repeated staff changes.

Yes, we are fearful about the fate of our children in the face of the proposed changes.

Our fear is equaled by our frustration when the DHHS talks about how reducing services will give our children more time in the community. Being alone in the community is not a good thing when you don’t know how to safely cross the street, manage emotions or not wander into a stranger’s yard or home.

We cannot mistake being in the community as simply a physical presence. Being in the community in a meaningful way means having relationships with members of the community. Staff need targeted training and time to get to know the people under their care in order to foster safe and meaningful community access.

Now, because we don’t want to be uniformed, we ask our providers questions, like any parent would ask of a professional caring for their child. By asking questions, we’ve learned that paying providers at 100 percent of the rate when they meet 92.5 percent or more of the time allocated is in our children’s best interest.

The current payment range has a purpose. If a client is sick or in crisis and has to stay home during hours when they normally would be at a day program, the agency can allocate staff to stay with them. When grandparents visit, the client can spend time at home with their family and staff won’t forfeit pay. When schedules change, a flexible funding formula allows agencies to slightly reduce or increase staff time. Providers will be unable to do this under the proposed change.

We recognize that it is costly to support our children and others like them. We believe the system needs to be changed – but not by slashing the rates. That will only worsen the staffing problem and jeopardize the safety of hundreds of people with intellectual and developmental disabilities. Instead, we need to be innovative.

For example, last year, the Maine Coalition for Housing and Quality Services proposed that the DHHS increase funding for Section 29 from 20 hours per week to 40 hours per week.

By giving individuals with intellectual and developmental disabilities more support, they won’t have to choose between day programs, supported employment and home support. They can get the support they need, when and where they need it; families can still work 40 hours a week, as they need and want to do, and demand for Section 21 will go down, which means the waiting list will shrink.

This is the type of alternative program that can ultimately improve the lives of people with intellectual and developmental disabilities and potentially save money. But until the DHHS admits a crisis exists, and is willing to work with families and providers together instead of trying to divide us, effective solutions will remain out of reach.

 

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