COFAR blog

GBH News, a public radio and television station in Boston, has become the first mainstream news outlet in Massachusetts to report on our concerns about the impending death through attrition of the Wrentham Developmental Center and the Hogan Regional Center.

Wrentham and Hogan are the two remaining congregate care centers for persons with intellectual and developmental disabilities (I/DD) in Massachusetts.

In her broadcast and online article on Wednesday, GBH reporter and producer Marilyn Schairer, interviewed COFAR members Kim Meehan and Colleen Lutkevich, who discussed the critical importance of those facilities to their loved ones who are living there.

Both facilities are referred to as Intermediate Care Facilities (ICFs), a designation under the federal Medicaid law that requires adherence to strict standards for care.

Colleen, who retired as COFAR’s executive director in 2021, talked about the benefits her sister Jean Sullivan has gotten from Wrentham where she has lived for the last 65 years. Jean lives in a cottage on the grounds.

Kim discussed her exhaustive efforts to get her 52-year-old sister, Kristen Robinson, admitted to the Hogan Center where she is now thriving. Kristen is profoundly intellectually disabled, legally blind and quadriplegic, and has a seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.

“Our family asked over 26 to 30 times to high-up people [in the state], ‘Why can’t she be admitted to the Wrentham Development Center or the Hogan Center?’” Kim told GBH. “And we were always told by the state that she was not eligible.”

Kristin was finally placed at Hogan last year after it became clear that no other DDS-funded facility could or would serve her.

State claims no admissions

We have long reported that the Department of Developmental Services (DDS) rarely accepts new residents to either Hogan or Wrentham, and does not offer either those facilities or its own network of state-operated group homes as residential options to persons seeking placements.

As a result, the population or census at Wrentham and Hogan has been steadily dropping in recent years. The latest data we have gotten from DDS shows that the census at Wrentham was 143 as of June 30 of this year, down from 211 in Fiscal Year 2020. The census at Hogan had dropped to 84, down from 106 during that same time period.

A DDS spokesperson stated to GBH that the Department has no intention of shutting either Hogan or Wrentham down. Yet, in response to a Public Records Request from the news outlet, DDS stated that no new residents have been accepted at Wrentham since the end of 2023, and no new residents at Hogan have been accepted since the end of 2020.

In our view, there can be no long-term future viability for either Wrentham or Hogan if the Department declines to accept new residents to them.

(DDS did not explain how its statement that no new residents have been accepted in recent years squares with the fact that the Department has agreed to place a handful of residents at the two facilities, such as Kim Meehan’s sister.)

Undisclosed acceptance criteria

Adding to the confusion, DDS also told GBH News that it will still accept people at Wrentham and Hogan if they meet the Department’s acceptance criteria. But the Department did not disclose what those criteria are.

As we have reported, DDS has stated that DDS “avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.”

It is not clear whether the presentation of a health or safety risk are among the acceptance criteria DDS is referring to. If so, it does not appear those criteria are applied consistently.

DDS also argues that it avoids placements at Wrentham and Hogan because those settings are allegedly more restrictive than community-based settings. We disagree with that claim, noting that many individuals and their families maintain that Wrentham and Hogan are communities in themselves, and are well integrated into their surrounding neighborhoods, cities, and towns.

Those families also argue that so-called community-based group homes are often not truly integrated into surrounding communities, and are actually quite restrictive in their policies. Meanwhile, thousands of people are waiting for residential placements in group homes that are rife with abuse and neglect and underpay their direct-care staff. The executives who run those corporate providers make exorbitant salaries.

Few legislators stepping forward

In May, COFAR took part in a visit to the State House in Boston in which a dozen Hogan and Wrentham advocates met with staff members of two legislators. Unfortunately, no legislators themselves attended the meetings.

However, GBH reported that state Representative Marcus Vaughn, a Republican from Wrentham, has expressed support for the preservation of the ICFs. “At a time when our state faces a growing demand for specialized care and appropriate placements, reopening admissions and thoughtfully expanding that capacity at the (Wrentham) center is not only practical, but it’s the right thing to do,” Vaughn said.

GBH even interviewed a corporate provider executive who acknowledged that Wrentham and Hogan serve as a backstop of care for persons who can’t be served successfully in the community. “It’s interesting because people’s impressions of institutions are dated,” Brian Carbone, a senior vice president at the May Institute, told the news outlet. “I think there is a place for (Wrentham and Hogan),” Carbone said.

Article inaccurately stated that Fernald was closed due to abuse

While GBH stated correctly that the state has closed most of its state-run facilities for people with I/DD, the news source inaccurately implied that those facilities had provided sub-standard care. The article stated that the former Fernald Developmental Center, in particular, “closed after its population decreased sharply amid allegations of sex abuse, human rights violations and unethical practices.”

When Fernald and the other ICFs were closed, there were no pending allegations of abuse or unethical practices in any of them. GBH and the rest of the news media have failed to specify that human rights violations at Fernald and other such facilities occurred between the 1940s and 1970s.

What is almost never mentioned by the media are the improvements that were made in institutional care starting in the 1970s in Massachusetts under the landmark Ricci v. Okin class action lawsuit. The late U.S. District Court Judge Joseph L Tauro, who oversaw the consent decree in that case, said in 1993 that the care in the institutions was by then “second to none anywhere in the world.”

Fernald was closed in 2014, long after those improvements were completed and strict federal standards were implemented under the ICF Medicaid designation. Several such facilities were closed, starting in the 1990s, on the basis of misleading claims that the state would save money in shutting them down.

Written version leaves out COFAR comment on right to an ICF

The written, online version of the GBH story also appears to have edited out my comment that federal law gives eligible persons the right to choose Wrentham and Hogan as residential options. My comment was included in the earlier broadcast version of the story.

Our position is that the federal Medicaid statute provides a right to ICF care, stating that if a state includes ICFs in its “State Medicaid Plan,” as Massachusetts does, the state must provide that:

…all individuals wishing to make application for medical assistance under the (state) plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. [42 U.S.C. § 1396a(a)(8)]

Federal Medicaid regulations state explicitly that individuals seeking care, and their families and guardians, should be “given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)] (My emphasis.)

We hope that in its future coverage, GBH will address and correct those statements. Overall, however, the GBH broadcast and online article are a great contribution to what has been, up to now, a one-sided discussion about ICF care. GBH has finally offered the other side of the story, which we greatly appreciate.