AUGUSTA — Lawmakers are considering a bill that would create an independent panel to review deaths or injuries among intellectually disabled Medicaid patients, a move spurred by a federal report that faulted Maine for failing to report or investigate thousands of “critical incidents.”

The scathing 2017 report from the U.S. Department of Health and Human Services found that the state failed to adequately investigate 133 deaths of Medicaid beneficiaries with intellectual disabilities or autism. The report also said the state only investigated a fraction of the thousands of reports of potential abuse or neglect and did not convey those reports to the local district attorney.

A bill debated Friday would create an independent, 14-member panel to review deaths and serious injuries among developmentally challenged individuals. The panel would report all investigation results to the commissioner of the Maine Department of Health and Human Services and report annually to the Legislature.

“Sadly, the lack of oversight over how serious incidents and deaths among this population are reported still exists,” said Rep. Colleen Madigan, D-Waterville, the bill’s sponsor. “This bill seeks to remedy that situation.”

The August 2017 report from the federal agency’s Office of Inspector General prompted high-profile discussions in 2017 and last year in Augusta over whether Maine DHHS was doing enough to protect adults with developmental disabilities.

The report cited widespread failures within Maine DHHS for monitoring or holding accountable the community-based providers who care for developmentally disabled adults and are responsible for reporting incidents to the state.

In the case of deaths, Maine DHHS reported that its Mortality Review Committee reviewed 54 of the 133 incidents but the state was only able to provide “general information” about even those 54 cases.

“It did not specify any trends the state agency identified, what its reviews entailed or the outcomes of the reviews, including potential corrective actions,” the Office of Inspector General report says. “Furthermore, the state agency did not investigate any deaths of beneficiaries with developmental disabilities involving allegations of abuse, neglect or exploitation and did not immediately report these beneficiary deaths to the appropriate district attorney’s office or (medical examiner).”

Those words still resonated Friday during a public hearing on the bill, L.D. 1377, before the Legislature’s Health and Human Services Committee.

“That’s disturbing, I’m sure we all would agree,” said Jennifer Putnam, executive director of The Progress Center, which provides residential and other services to disabled adults in western Maine. “The Death and Serious Injury Review Panel proposed in L.D. 1377 provides the department with a clear path to compliance around this report.”

Putnam, who also serves on the state’s Developmental Services Oversight and Advisory Board, said some changes have been made since the 2017 report.

For instance, DHHS requires any deaths to be reported to the Adult Protective Services program. But that same program also receives reports for thousands of “critical incidents,” so having a single panel to look only at deaths or the most serious injuries would help, Putnam said.

The federal report found that nine of the 133 deaths “were unexplained, suspicious and untimely” and that corrective action or preventive steps could have been identified.

Lydia Dawson with the Maine Association for Community Service Providers also pointed out that the federal report found that Adult Protective Services investigated only 5 percent of the more than 15,000 “critical incident reports” of possible abuse or neglect. That statistic raises concerns, Dawson said, about whether Adult Protective Services should be solely responsible for reviewing suspicious or untimely deaths.

“But more than that, a mortality review panel would be able to suss out the systemic problems associated with deaths,” Dawson said. “It may not be that a death was particularly suspicious … or related to abuse, neglect and exploitation, but (that) the system had so failed the person that they were left in a vulnerable situation that they didn’t need to be left in.”

Individuals with disabilities as well as advocacy groups raised several concerns about the bill Friday. Most notably, they objected to language that would allow the executive director of the Maine Developmental Services Oversight and Advisory Board to access confidential personal records as part of an investigation “without first obtaining written permission.”

“You shouldn’t be able to have access without informed consent. It’s just not fair,” said Joshua Weidemann, a Topsham resident and “self-advocate” who has cerebral palsy. “Each and every one of you go to a doctor, and you have to give consent for the doctor to treat you or to send your medical records away. Why is it any different?”

Staci Converse, managing attorney at Disability Rights Maine, testified against the bill, but told committee members that the bill could be fixed by removing the language granting the executive director that access without consent.

“We don’t feel we could support a bill that allows that much access to personal, confidential information. It’s just a nonstarter,” Converse said.

DHHS officials submitted written testimony neither for nor against Madigan’s bill Friday.

The Legislature passed a bill last year that sought to address the lack of investigations, albeit through a slightly different route. The final version of that bill would have directed the Attorney General’s Office to review all deaths or serious injuries of developmentally disabled or autistic adults in the Medicaid program and refer those cases to the Maine Elder Death Analysis Review Team.

But then-Gov. Paul LePage vetoed the bill, writing in his veto letter that deaths are already reported to Adult Protective Services. LePage said DHHS welcomed “oversight that will improve our system of care and prevent any possible death or serious injury,” but called the Attorney General review duplicative and an inefficient use of state resources.

An effort to override LePage’s veto failed in the House, with most Republican lawmakers siding with LePage.

That unsuccessful bill was sponsored by the late Rep. Dale Denno, a Cumberland Democrat. Denno introduced the proposal to create the review panel again this year, but Madigan agreed to take over the bill for her friend after Denno resigned from the Legislature as he battled lung cancer. Denno died last month.

“As Dale said in his testimony on this bill last year, ‘If we fail to act to protect these Maine citizens, then we will have failed to do our jobs,'” Madigan said.

 

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