Maine: Drastic reductions proposed in services to severely DD adults in the name of Independent Living

In an article in the Portland (Maine) Press Herald, “Out of the spotlight, DHHS cuts away at humane care”, 1/6/16, Bill Nemitz covers a story unfolding in Maine that could spell disaster for adults with severe developmental disabilities. The state justifies cuts to services by claiming that it wants to realign services with what people actually need. This is not a new concept, but Maine officials also want to “guard against attitudes that would inappropriately limit what an individual can do,” says Health and Human Services Commissioner Mary Mayhew.

Those bureaucrats in Maine may have a cruel streak or maybe they are just delusional, but at least they have a sense of irony, as Nemitz points out. They are calling their new assessment policy, the “Supporting Individual Success rate-setting initiative”.
 
For people unfamiliar with disabled adults with profound disabilities, especially those with dangerous behaviors that put them at extreme risk of harm, it may be hard to believe that their needs justify so many service hours. But consider the testimony of the executive director of a provider of residential services. He says that 76 of 91 people that his agency serves will have their service hours cut and gave examples of the people affected:

• Peter, 91, whose diagnosis includes profound mental retardation and a host of other disorders, will see his staffing hours drop from 200 per week (at times he needs two staffers) to 69.
• Mariya, 30, has autism with severe mental retardation and takes 30 medications per day. Her hours will decrease from 232 to 99.
• Thomas, 54, has autism with severe mental retardation and several other disorders along with a recent diagnosis of melanoma. His hours will drop from 240 to 102.
• Jono, 28, has autism, mental retardation, cerebral palsy, mood disorder and severely intrusive behaviors. He gets 210 hours now; he’ll soon get 102.
• Dan, 24, has mental retardation, quadriplegic cerebral palsy, seizure disorder and is unable to talk or feed himself. His hours will drop from 141 to 99.

Mary Mayhew from DHHS says in response to criticism of the proposed initiative that the state will create a new system that is “free from the perverse incentives that may exist from the providers’ perspective.”

If the proposed scheme to allow people to live independently without the services they need doesn’t work for these severely disabled adults, they can appeal to the state for extra help. The qualifications for staffing, however, will be so high that when extra help is approved, providers fear they will not be able to meet the standards proposed by the state. As a father of two affected adults described it, "...It's designed for failure." 

Read more of the story for many more personal stories from families.