COFAR blog

In July 2023, the Department of Developmental Services (DDS) created what was described as a novel residential program for two intellectually disabled women who had been subjected to poor care and conditions in a previous group home.

The Department proposed to rent an apartment in Andover for the women, and staff the new residence with direct care workers. Those workers would be employees of Northeast Residential Services (NRS), a division of DDS, which operates group homes in DDS’s Northeast Region of the state.

It was promised by DDS as a long-term solution to the problems associated with the previous placement, and appeared to be a new approach to residential care. It would be a state-run setting that nevertheless promised to be less restrictive and possibly more integrated with the community than would a group home.

It was to be an apartment where the two women could lead independent lives while still receiving Intensive Support Services from DDS.

Mia Cappuccio at Northeastern University recently for Operation House Call, a community-engagement program with medical students that her parents arranged for her to participate in.

But DDS suddenly terminated the program last April, only eight months after it began. Jeanne Cappuccio, the mother of Mia, one of the two roommates, said the termination was an act of retaliation against her for having reported an incident of alleged emotional abuse of Mia by a staff member.

Jeanne maintains that far from providing better care than the previous group home had provided, DDS never appeared to be committed to making the new residential program work. Soon after the women moved into the apartment on July 4, 2023, Jeanne said, she realized that only four staff were being made available to the women even though both need care 24/7. As was the case with Mia’s previous group home, few activities were provided in the apartment, she said.

Then, in September 2023, just two months into the program, NRS removed the part-time residential manager of the residence.

That month, Jeanne sent an email to NRS administrators, contending the staff were failing to provide exercise activities for Mia and were allowing Mia to spend her money on junk food even though she had contracted diabetes after engaging in that same behavior in her previous residence.

And, Jeanne wrote, the staff in the new residence were failing to provide information about meals served there; were not working with Mia to participate in household activities such as cleaning her room or doing laundry; and were not providing community-engagement activities for her.

Termination appeared to be an act of retaliation for abuse complaint

According to Jeanne, rather than agreeing to investigate and resolve her concerns, DDS administrators became dismissive and increasingly hostile toward her.

Then came an incident on February 20, 2024, when Jeanne was talking with Mia over the phone and overheard a staff member begin shouting at her daughter to get back in her room. Her daughter had been attempting to do her laundry, but the staff member would not let her do it. She said her daughter began crying.

Jeanne said she tried calling both NRS and DDS to express her concern about the situation. But there was no response, so she drove to apartment. Still unable to get any answers, she filed a complaint with the Disabled Persons Protection Commission (DPPC).

This was not the first such incident involving the staff and Mia. Jeanne said this incident had followed an incident a few months prior in which a staff member, while driving Mia back from her day program, had threatened to kick Mia out of the car and leave her on the side of the road because she was crying.

In addition, staff in the apartment often bullied Mia, according to Jeanne, by doing such things as sending her to her room for being “annoying,” and refusing to let her leave the table after meals until she ate everything on her plate. They often refused to answer questions she had about completing tasks.

On February 21, 2024, a day after Jeanne filed her DPPC  complaint, NRS Director Scott Kluge emailed Jeanne, contending she had misrepresented the incident in the laundry room, and accusing Jeanne of “continuing to create a toxic environment for your daughter to live in and for our staff to work in.” As usual, Jeanne said, DDS and NRS were blaming her for shortcomings in care, for which they themselves were responsible.

Kluge, who had not been present in the residence at the time of the laundry incident, maintained that Jeanne’s “behavior was unacceptable,” and then said, “I strongly encourage you to work with the (DDS) Area Office to discuss other service options as clearly this is not working.”

Jeanne contends that Kluge’s February 21 email was a not-too-subtle threat that he might evict Mia from the program in retaliation for her mother’s complaint to the DPPC.

Then, on February 23, 2024, just two days later, Kluge emailed Jeanne to tell her that the residential program would indeed be terminated in roughly a month, and that the cause was a staffing shortage. But Jeanne pointed out that no such shortage was indicated in Mia’s Individual Support Plan (ISP), which had been completed and processed by DDS on February 12, just over a week before. The ISP did not identify any concerns about Mia’s supports or services.

But DDS was not done. On the same day that Kluge announced the termination of the program, DDS’s legal division petitioned in Middlesex Probate Court to limit or possibly eliminate Jeanne’s and her husband Tom’s co-guardianship of Mia. That action had come out of the blue. There was no indication in Mia’s ISP that she didn’t need guardianship from her parents.

Jeanne said that DDS eventually withdraw its petition, but only after she had initiated discovery proceedings against DDS in the case.

Unfortunately, Jeanne’s allegations about the Andover program appear to jibe with complaints we’ve heard from many family members and guardians that both DDS and its corporate providers retaliated against them when they raised concerns about poor care and conditions in DDS-funded programs. (See some examples of that can be found here, here, here, here, and here.)

State Senator Kennedy and other legislators ‘ignored us’

Partly at our suggestion, Jeanne sought support from key state legislators before and after the program termination, particularly from the co-chairs of the Children, Families, and Persons with Disabilities Committee. She did manage to arrange two virtual meetings with a member of the staff of State Senator Robyn Kennedy, Senate chair of the committee.

But Jeanne said that while Kennedy’s aide had promised to set up a meeting with the senator, to which Mia wanted to go, that promise wasn’t kept. She added that she also emailed Representative Jay Livingstone, House chair of the Children and Families Committee, and the rest of the committee members, but never heard back from them.

Pushing ‘self-directed services’

Jeanne contends that in addition to reacting negatively when she raised concerns about Mia’s care in the residence, DDS officials began pushing her to adopt a “self-directed services” model under which Mia would live and receive services in her parents’ home. Under self-direction, the individual or their guardian is given a budget by DDS and is directed to choose their own services and hire their own staff.

Many advocates and family members have expressed frustration that statutory requirements governing self-directed services are not being met by DDS, and that the Department’s allocated budgets are inadequate.

Nevertheless, when Jeanne complained in September 2023 about a lack of activities for Mia and other problems in the residence, DDS Northeast Regional Director Kelly Lawless replied in an email that, “I want to reply to make sure you understand that if you are not satisfied with the services that NRS provides, you should reach out to the Area Office to discuss Self-Direction.”

But Jeanne said that while she did express interest in learning more about self-directed services, DDS never specified a budget for it even though she had asked repeatedly for that information.

Program termination appealed

Jeanne has now launched the second of two administrative appeals of the termination of the apartment program, arguing that it amounted to an eviction of Mia and her roommate without complying with regulations requiring DDS to offer her improved services elsewhere.

Jeanne’s first appeal, which was filed shortly before the program was terminated in March 2024, was quashed by DDS in what appears to have been a violation of a DDS statute and regulation that allow clients to appeal “transfers” from one DDS-funded residence to another. As a result, she refiled her appeal with the state Division of Administrative Law Appeals (DALA) in December.

By way of disclosure, I am acting as Jeanne’s advocate in seeking a DALA hearing in that refiled appeal. DDS initially objected to my role, but was overruled by the DALA magistrate. However, DDS has also filed a motion to dismiss Jeanne’s appeal. We have filed briefs objecting to the Department’s motion.

DDS is continuing to use an argument, first employed against Jeanne at the time the program was terminated, that she has no grounds to appeal to DALA because she took Mia back home with her and Tom just days before the termination, and therefore no appealable “transfer” actually took place.

Our response to that argument is that Jeanne and Tom had no choice but to take Mia home because all services were about to end in the apartment. We maintain that DDS’s argument was and is disingenuous. The termination of the services amounted an eviction of Mia; and that eviction was effectively a transfer. The only difference between an eviction and a transfer is there is no suitable alternative location in an eviction.

We are asking DALA to order DDS to comply with all of the provisions of the transfer statute by acting with reasonable promptness to find another residential program for Mia, which would provide her with improved services and meet all requirements in her ISP. In the meantime, we argue, DDS should be ordered to provide sufficient supports and staffing to Mia in her current location to meet those same ISP requirements.

Mia’s supports and services continue to be inadequate

Since April 1, 2024, Mia has continued to reside in her parents’ home. While Tom is now paid as a shared living caregiver for Mia, Jeanne maintains that both she and Tom, who are in their 60s, are “overwhelmed with the challenges of providing Mia’s intensive supports and maintaining our commitments to our full time jobs.”

Jeanne said she and Tom are dedicating the majority of their time to Mia’s care, including her need for activities, companionship, nutrition, medication, medical appointments, and legal challenges. But it has been inadequate because DDS has not provided Mia with physical therapy nursing, or counseling services for the past year. She said Mia continues to have night terrors and has become more timid and inhibited as a result of the treatment she received from some of the staff in the apartment.

Yet Mia wants to be independent, Jeanne said. “She (Mia) wants to live in a home with a housemate with similar interests and goals and she wants to have friends,” Jeanne added. “She wants to live a full meaningful life in accordance with the DDS rules and regulations. She is not asking for anything above that. It should not be impossible.”

Jeanne said that in March of last year, with the termination of the apartment program looming, DDS Northeast Regional Director Kelly Lawless told her that, “‘What you (Jeanne) are seeking does not exist in DDS.'” She said she responded to Lawless that she “was advocating for adequate care and intensive supports for Mia. I asked her why that doesn’t exist in DDS, and she said that, ‘Your expectations are too high.'”

Clearly, expecting adequate care is not an unreasonably high expectation.

Mia herself seemed to sum it up during a bill sharing session hosted earlier this month by the Massachusetts Developmental Disabilities Council (MDDC), which Mia participated in via Zoom. “I want to help people and be a part of the community,” Mia said during the recorded session, with her mother sitting beside her.

Mia was helped in drafting her statement by a graduate student from Brandeis who was interning with the MDDC. “I want a home where I feel safe and with nice staff that will not yell at me and tell me to stay in my room,” Mia added. “I want to make choices about my life.”