State elder affairs office shelved citizens advisory council before coronavirus crisis

Panel offered feedback on conditions in Massachusetts nursing homes

Penny Shaw rode her powered-wheelchair near Braintree Manor, where she is a resident.John Tlumacki/Globe Staff

For over a decade, a citizens advisory council gave feedback to the state’s Executive Office of Elder Affairs on a host of aging issues, including conditions in nursing homes.

But last October, the new Massachusetts elder affairs secretary, Elizabeth Chen, suspended the longstanding practice of quarterly phone calls with the panel, telling one member she was “pausing the regular meetings” to consult with a broad range of seniors across the state.

Now, as the coronavirus ravages Massachusetts long-term care facilities, some former members of the advisory council say state officials responding to what’s arguably the worst crisis for the elderly in state history may be missing out on the grass-roots perspective it provided on crucial issues, including staffing, funding, and isolation in senior care sites. More than 2,700 long-term care residents have died from COVID-19, about 60 percent of all Massachusetts deaths.

“In the current pandemic, we could have made a contribution on some of the most important issues," said Penny Shaw, an aging and disabilities advocate who lives at Braintree Manor nursing home and quit the council when the quarterly calls were halted. By sharing their experiences, she said, “we could have helped create the agenda” for state leaders scrambling to help hard-hit senior care sites.

Shaw, a retired college professor who uses a powered wheelchair because she has Guillain-Barre syndrome, a rare neurological disorder, served on the panel for seven years. Its last meeting was shortly after Chen was named secretary last June.

In an e-mail to Chen last fall, Shaw resigned in protest after the elder affairs staff deflected her queries about when the panel would next meet. “We have important issues we would have liked to raise with you that you did not give us the opportunity to,” Shaw wrote.

Other council members, who remain on the dormant advisory body, said it was Chen’s prerogative to change how she received feedback. But they agreed with Shaw that the council had been a valuable forum, providing voices from the field that officials might not hear in their typical rounds of meetings with lawmakers, lobbyists, advocates, and service providers.

Tom Clasby, who’d served on the citizens panel for a decade and chaired it for the past eight years, said he feels he can still offer input to state officials in his capacity as director of the Quincy council on aging. But he said the advisory group helped bring issues to the attention of state officials.

“I hope that they have something in place to get [advice] in some capacity,” Clasby said. "I’m not sure that they do.”

State officials didn’t respond to a request to interview Chen.

A state spokesman said Chen plans to reconvene the advisory council in the future. “The secretary’s goal in the first year was to expand her feedback loop as wide as possible, and she has done that by traveling thousands of miles, to every region of the state” to meet with aging officials, the spokesman said. “She looks forward to meeting with the [advisory council] soon, sharing what she has learned in her first year, and how it has informed her priorities and plans going forward.”

The spokesman said Chen and other elder affairs officials have been working during the pandemic to ensure home care, nutrition, housing support, and caregiver services continue. He said Chen was part of a Baker administration team that created a process to meet emergency staffing at long-term care facilities through a computer portal for applicants.

Chen, a former biotech executive, served as assistant commissioner of the state Department of Public Health before she was named elder affairs secretary. At the DPH, she was responsible for the safety and quality of health care for residents seeking services in long-term care settings.

Chen’s current boss, Secretary of Health and Human Services Marylou Sudders, is part of a small group of state officials leading the response to COVID-19, appearing frequently with Governor Charlie Baker at press briefings. But Chen has had almost no public profile during the crisis.

The position of elder affairs director, once cabinet-level, has been gradually downgraded since the Romney administration. Under the Baker administration, the budget for MassHealth, which provides much of the funding for nursing homes, has been transferred to the health and human services office. That office also oversees more than a dozen other state services ranging from welfare to youth services to veterans affairs.

Another member of the citizens advisory council, Arlene Germain, policy director of the Massachusetts Advocates for Nursing Home Reform, said members had asked state officials in recent calls to add a consumer voice to a state task force that included representatives from nursing home operators and unions seeking higher MassHealth reimbursement. Some have blamed inadequate reimbursement rates for the low pay and chronic staff shortages at facilities even before the pandemic.

“The council would have had value right now,” Germain said. “It could be an overall umbrella of expertise from people who have been in the field for decades that could help in coordinating the state response to the coronavirus.”

Chen’s immediate predecessor as elder affairs secretary, Alice Bonner, said her successor might be taking a different approach to interacting with the aging community. “It may be there are other ways for these voices to be heard,” she said.

Bonner, however, said she found the advisory council discussions — which she called “bidirectional and conversational” — an important sounding board for assessing policies and services provided by the elder affairs office.

“For me, personally, I found the group was useful because they were really from the community,” Bonner said. “The discussions were great and there were always good ideas. It kept me in touch and gave me an impression of what it was like to be an older adult in the community.”