Parents and caretakers said Wednesday they strongly support two bills to increase the accountability and transparency of the Department of Health and Human Services’ role in overseeing care for people with intellectual disabilities and autism.

“I would feel better,” Darla Stimpson Chafin told the Legislature’s Health and Human Services Committee at a public hearing for L.D. 1676.

“Parents of adults in the system want to know that these people we love will be treated with the same respect and basic safety that we all expect in our lives,” said Chafin, whose 50-year-old daughter is autistic.

The bill would create an independent panel to review deaths and serious injuries, and would also require DHHS to hire a full-time registered nurse to review reports and work with the panel, and make annual reports to the committee.

The bills come in the wake of a scathing federal report released last fall that found the department neglected to investigate 133 deaths and did not properly report critical incidents including sexual assault, suicidal acts and serious injuries over a 2½-year period.

“The report was very troubling, but even more alarming was the silence that followed. The fact that there was no oversight body to catch this failure is almost unbelievable,” said bill author Rep. Dale Denno, D-Cumberland.

A second bill, L.D. 1709, seeks to bolster the role of an existing but anemic oversight board – the Maine Developmental Services Oversight and Advisory Board.

Terri Earley said a review of deaths by an independent panel might have helped her get answers about her healthy, 21-year-old autistic son, who died of a seizure six months after moving into a group home. He was discovered in the morning, not by overnight caretakers who were supposed to check on him every 20 minutes and listen all the time.

“We really were left with lots of questions,” Earley told the committee: Were the employees awake? Was the baby monitor on? “These are answers we’ll never know.”

An independent panel might “give them a slap on the wrist” – and send a message to other caretakers to closely monitor clients.

“I don’t want to penalize a home where there aren’t enough homes. But I don’t want his death to be in vain either,” she said. “It deserved to have some attention.”

DHHS is making changes in response to the audit, officials say, and on Wednesday a representative noted that the department is now investigating all deaths of clients, and creating new protocols for meeting and communicating with providers.

L.D. 1709, the bill to bolster the oversight and advisory board, would allow the board to “complete the task they were created to carry out,” said bill sponsor Rep. Jennifer Parker, D-South Berwick.

The board and supporters meet monthly, but DHHS stopped sending it data years ago, even though the department is required by statute to provide the information, members told the committee. The 15-member board has only five or six official members because names put forward for appointment never get vetted or approved by the department and governor’s office, according to the board’s executive director.

“The board’s ability to provide independent oversight has been almost entirely stymied by the board’s inability to receive any statistics or data from (DHHS) regarding the very population the (board) was designed to protect,” said Executive Director Nonny Soifer. “This has been very frustrating and also quite frightening. We know that the health and safety of Maine adults with intellectual disabilities or autism has been severely compromised, yet the (board) has not been informed of incidents of abuse, neglect or death.”

Amy MacMillan, acting director of the Office of Aging and Disability Services in DHHS, said the department opposes L.D. 1709. She said DHHS stopped sending the board information in 2016 after a breach in confidentiality, and referred questions about the failure to appoint members to the governor’s office.

DHHS is supposed to provide the board information on, among other things, injuries and deaths, crisis services, quality assurance and budgets. The board, in turn, is supposed to “provide independent oversight” and focus on systemic concerns around health and safety, and delivery of services, and to report annually to the governor and Legislature.

“If I didn’t want a board to exist, I’d make it nonfunctional,” Rep. Patty Hymanson, D-York, said to MacMillan. “Another way I’d do that is to not give it information at all.”

“Does the department often choose to follow or not to follow a law?” she asked MacMillan.

One parent nominated to the board two years ago says she attends the meetings even though she never heard from the governor’s office about her appointment.

“But more importantly than a formal appointment, I want to point out how disappointing and disheartening it has been to sit together, month after month, with the other (board members), with nothing to review, no data to examine, no reports to read, nothing,” said Kim Humphrey, whose 28-year-old autistic son lives in a group home. “We are unable to do what the law has set forth for us as a protection for people like my son.”

The committee will hold a work session on the bills.

Noel K. Gallagher can be reached at 791-6387 or at:

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