The last thing Lindsay Lawler’s parents want is for the state to leave her alone.

“It’s a safety concern,” said Rob Lawler, 72, Lindsay’s father, in a moment of understatement as he stood outside a packed hearing room in Augusta on Tuesday morning.

Inside, aging parents like the Lawlers waited patiently to speak to a hearing officer from the Maine Department of Health and Human Services. The singular message: Their adult children – all with severe intellectual disabilities, autism spectrum disorders and countless other debilitating conditions – will be left directly in harm’s way if a rule change now making its way through the state’s regulatory pipeline is approved sometime in the next few months.

It’s called, ironically, the Supporting Individual Success rate-setting initiative, a new approach to assessing the needs of developmentally disabled adults under the state’s MaineCare program.

According to Health and Human Services Commissioner Mary Mayhew, it will better align people who need help with the services they actually need. That in turn will create a more efficient system that encourages independence and, as Mayhew put it in an interview Tuesday, “guards against attitudes that would inappropriately limit what an individual can do” on his or her own.

Fair enough. Lindsay and hundreds of other Mainers like her, however, need all the help they can get 24 hours a day, seven days a week, 365 days a year – which is exactly what she’s been receiving since she moved into her group home in Sanford almost two years ago.


No longer.

Neal Meltzer, executive director of Sanford-based Waban Projects, Inc., which operates Lindsay’s group home, recently notified the Lawlers that under the state’s new formula, Lindsay’s 168 hours a week of residential staff support would be reduced by 69 hours per week, or 41 percent.


As her mother, Luann Lawler, 69, testified on Tuesday, those 69 hours spell nothing but danger for the daughter Luann and Rob have protected from one nightmare after another since the day Lindsay was born with severe developmental disabilities 37 years ago.

Without constant staff support, there will be no one to prevent Lindsay from biting her wrists, butting her head, hitting, screaming, destroying property or throwing things when she’s feeling anxious or frustrated.

There will be no one to help her with her hygiene, food preparation, medications. No one to be there when she wakes at all hours during the night and, upon realizing she’s alone, flies into a panic.


“She has to be continually watched so that she will not go outside unassisted and dart into traffic,” said Luann. In addition, “she has a history of attacking strangers in public settings, which is a liability concern.”

Overwrought parents these are not.

As recently as December of 2014, Lindsay’s psychiatrist diagnosed her with autistic spectrum disorder, generalized anxiety disorder, intermittent explosive disorder and sensory integration disorder, compounded by moderate mental retardation.

Noting that Lindsay was “showing evidence of decline,” the psychiatrist added, “Lindsay is not a candidate for independent living, or even partial independence. I am strongly recommending that Lindsay continue to receive her current level of support in her living situation and with 24-hour staffing.”

Lest we dismiss Lindsay as a simple bureaucratic oversight, consider that Meltzer also testified Tuesday. Waban’s executive director told the hearing officer that of the 91 people receiving residential services from his agency, 76 will have their hours reduced under the new Supporting Individual Success system.

He held up photos of five:


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.

“Sadly, these are just a few examples of individuals whose needs won’t be met,” said Meltzer. “The end result of this will be that since their health and safety will be in imminent danger, we will not be able to continue serving these individuals.”


So what does Commissioner Mayhew say in the face of what by any reasonable measure looks like imminent disaster?

“We are not going to do anything that inappropriately detracts from the services for those individuals,” Mayhew said.

The new system, she said, aims to create a system that is “free from the perverse incentives that may exist from the providers’ perspective.”

Translation: Assume that the providers are somehow getting rich by caring for the neediest among us – which, as any visit to a place like Waban will show you, they are not. Then, after trimming this and cutting that, encourage those who once relied on the services to go it alone in the name of more “independent” living.

And what about those who won’t make it through Day 1?

“If there have been any mistakes made that have not reflected the true needs of the individual, then that assessment needs to be redone or we need to get an ‘extraordinary review’ conducted,” Mayhew replied.


An “extraordinary review” is the first step toward appealing to the state for Qualified Extra Support Service, which theoretically would put Lindsay and all the other high-need individuals back where they need to be when it comes to around-the-clock help. But therein lies another problem.

According to Meltzer, the Department of Health and Human Services has set the staffing qualification standards so high for Qualified Extra Support Service – a minimum three years on the job, for example – that there’s no way providers like Waban, which routinely see annual turnover rates as high as 50 percent, can possibly meet them.

“Do the math. … It’s designed for failure,” agreed Hans Olsen of Kennebunk during a news conference inside the State House welcome center that followed the hearing.

Olsen has two sons, Gunnar, 24, and Ansel, 21, currently under the full-time care of Waban Projects Inc. Both have carbohydrate deficient glycoprotein syndrome, an exceedingly rare metabolic disorder that leaves them unable to bathe or feed themselves, go to the toilet, take medications …

Under the new rate system, Gunnar will see his 24/7 assistance cut by 35 percent. Ansel will lose 55 percent.

As their father spoke quietly on their behalf Tuesday, the State House was abuzz because Gov. Paul LePage had just thrown another bombshell at the Legislature, accusing lawmakers of … whatever.


Occasionally, legislators on the go paused, peeked through the welcome center’s glass door to see what was going on and then, unimpressed, hurried along.

“It’s easy not to see us, but we’re here,” said Olsen. “And while there’s a lot of other things in the news right now, please pay attention to this.”

It’s the least we can do.


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