COFAR blog

Timothy Cheeks is a 41-year-old man with Down syndrome who lives in East Longmeadow in a group home managed by the Center for Human Development (CHD), a corporate provider to the Department of Developmental Services.

Since 2017, Tim’s foster mother and co-guardian, Mary Phaneuf, has dealt with a string of problems with Tim’s care at the residence including:

• A lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years;

• No documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect;

• A failure to treat Tim for two years for back pain and a degenerative back problem, and to fill a prescription for pain medication for him;

• A failure to ensure that Tim was receiving Social Security benefits for at least two years;

• The unexplained removal of Tim from his day program run by the Work Opportunity Center (WOC) in Agawam without informing Mary of that fact; and

• The diversion of food stamp benefits for Tim and at least one other resident of a CHD group home

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the department’s website does not mention those or similar problems in the agency’s group homes. The licensure report recommended deferring a new two-year license for CHD, but for generally worded reasons such as “medication treatments plans must address all required elements,” and “individuals’ funds and expenditures must be fully tracked.”

There was no indication on the DDS provider licensure report website whether a recommended follow-up review of the provider occurred or what the result was.

COFAR has reached out to DDS and CHD for comment. In an email sent this past Tuesday (July 9) to DDS Commissioner Jane Ryder, I asked whether DDS’s licensure staff takes abuse complaints and investigations into account in drafting licensure reports concerning providers.

In a separate email the same day to CHD President and CEO James Goodwin, I asked whether Goodwin believes his agency has sufficient policies and practices in place to prevent the types of problems Mary Phaneuf is alleging or whether such policies and practices are needed. I also asked whether CHD has policies both to ensure communication with family members and guardians who raise concerns about care, and to ensure that action will be taken to address those concerns.

To date, I have not heard back either from Commissioner Ryder or from Goodwin.

Tim Cheeks with his foster sister Nicole Phaneuf Sweeney

Based on email correspondence between Mary Phaneuf and the former CHD manager of Tim’s group home, it appears that his East Longmeadow residence was inspected in 2017 as part of a two-year, DDS licensure process.

In June, DDS issued a resolution letter in response to a complaint filed by Mary with the Disabled Persons Protection Commission (DPPC). The complaint alleged that Tim had been neglected medically and that his SSI had improperly been allowed to lapse.

The DDS resolution letter also concerned a separate complaint filed by an anonymous reporter that the then house manager had misappropriated food stamp benefits for Tim and another resident.

The DDS resolution letter asked CHD to provide an accounting of Tim’s health care and that of the other resident for the past four years as well as an accounting for $2,000 in food stamp benefits that were allegedly taken from Tim and the other resident.

The DPPC had referred Mary’s complaint to DDS and apparently referred the complaint about the food stamps to the Hampden County District Attorney.

The DDS resolution letter did not dispute any of the problems Mary raised, but said an investigator had concluded that none of the problems constituted a risk of serious harm to Tim. Mary disagrees with that assessment, and has filed an appeal of the resolution letter.

Mary said she wants the public to know about the ongoing issues with her son’s care, and about her frustration in getting DDS and the provider to react to them and provide her with answers to her questions. She would like to see her information investigated by the state Attorney General’s Office, which COFAR has previously reached out to in an effort to persuade the AG to focus on care in the DDS private provider system.

Family had implicitly trusted the system

Mary said that prior to 2017, when she discovered by accident that Tim had been removed without her knowledge from his day program by the then manager of his group home, she had implicitly trusted the system. She thought, for instance, that the group home staff was regularly taking him to doctors’ appointments, particularly given that such visits were part of his care plan or Individual Support Plan (ISP).

When she found out, however, that he had been removed from his day program, she began to question everything the provider staff did or said. She was later to discover, for instance, that while Tim’s 2018 ISP stated that he had been to a dentist in September of that year and a doctor in October, CHD was unable to provide any documentation to back up those claimed visits. She now doubts that many, if any, of those visits actually occurred.

Adopted as a foster child

Tim first came to live with Mary and her family in 1981 as a foster child when he was three years old. At 22, when he became eligible for DDS services, he moved into a group home, and Mary became his co-guardian along with Tim’s birth mother. However, Tim’s birth mother has not been in contact with him, and Mary said she was told by DDS that the birth mother subsequently resigned as co-guardian.

Last year, one of Mary’s daughters, Jessica Szczepanek, became Tim’s health care proxy. Mary would like to make Jessica Tim’s co-guardian.

A 2017 DDS licensure report for CHD describes the provider as “a large, multifaceted organization,” and states that CHD operates throughout western Massachusetts as well as Connecticut.

Untreated back pain

Mary said Tim has complained of severe back pain since 2017; but after being assured by the then CHD house manager that he had been seen by a doctor who suggested it was just a posture problem, Mary discovered that he was sleeping on a “very old” futon mattress without a box spring to support it.

Additionally, she said, she discovered that he was sleeping several nights per week at another CHD residence in Wilbraham, on the Springfield line, where he had to sleep on a couch or the floor.  She said she requested that CHD provide him with a proper mattress and box spring, and either purchase a bed for him at the other residence, or stop taking him there overnight.

Shortly after that, she said, she received a statement in writing from the house manager that she had purchased new memory-foam mattresses for Tim for both the East Longmeadow and Wilbraham residences.

But Tim’s back problems continued. And after visiting his East Longmeadow residence in January, Jessica went into his bedroom to look at his mattress that the house manager said she bought for him.  There was not a memory foam mattress or box spring in his room, she said.  Instead, he still had a futon mattress, and the tag on the mattress was so old that the letters were not legible.

No documented doctor’s appointments for seven years

In a letter sent in January to DDS Area Director Dan Donnermeyer, Mary said that she and Jessica were told the previous fall that a doctor’s appointment had been scheduled for Tim, but that the appointment kept getting rescheduled by the group home management. 

In an email to COFAR, Jessica stated that during an ISP meeting last October, the then house manager had told her a physical for Tim had been scheduled for the following month of November. But in November, the house manager said the appointment had been rescheduled by the doctor’s office to late December.

Then, the day before the scheduled December doctor’s visit, the house manager told Jessica there had been “a miscommunication,” and Tim’s appointment had been moved to March 2019.

Jessica then called the doctor’s office directly.  The receptionist confirmed that Tim did indeed have an appointment scheduled for March 2019, but that the appointment had only been made one day prior to her call on December 21, and that it was a new-patient visit because Tim had never been seen at that office.

At that point,  Jessica wrote, she asked that CHD in December to provide her with documentation of Tim’s last visit to a primary care physician, as well as his last visit to his cardiologist, who he is supposed to be seeing annually for his congenital heart defect.

Mary provided us with CHD’s documentation of a visit to a Dr. Masih Farooqui in Wilbraham in January 2011, which she said was the most recent doctor’s visit that CHD was able to document. She said the most recent visit to a cardiologist for which CHD provided documentation was in 2012.

Despite that, Tim’s ISP documents, which are dated October 2018, contain a claim that his last physical was in September 2018. The 2018 ISP also lists the name of Dr. Farooqui as Tim’s primary care physician. Mary believes the visits claimed in the ISP never occurred.

The 2018 ISP also listed Dr. Farooqui as practicing at the 77 Boylston Street, Springfield, address of Hampden County Physician Associates. COFAR confirmed, however, that Hampden County Physician Associates no longer exists, and that Dr. Farooqui is now on the oncology staff of the Mercy Medical Center in Springfield.

COFAR was unable to reach Dr. Farooqui to confirm the year that he left that primary care practice.

Back pain prescription not filled

Mary said that on January 14 of this year, Jessica brought Tim to an Urgent Care clinic after CHD contacted her to report that Tim was continuing to experience severe back pain. She said she subsequently learned that group home staff had taken Tim to the same clinic a couple of weeks before at the end of December without her knowledge.

Mary said that after doing X-rays at the January Urgent Care visit, the doctor told Jessica that Tim had deterioration of muscle between vertebrae in his back, and that the pain he was experiencing could have been alleviated with physical therapy in 2017 when he first began complaining of back pain.

Mary added that during the previous Urgent Care visit in December, which was also for back pain, Tim was given medication and was prescribed a muscle relaxant. However, she said, CHD later informed her that the manager on duty at the group home never had the prescription filled. This resulted in continuing back pain and spasms for Tim.

Meanwhile, Jessica found out at the January Urgent Care appointment that Tim’s Mass Health coverage had been allowed to lapse for the past two years and that his Massachusetts state ID had also lapsed.

Removal from day program

In May 2017, Mary discovered that Tim had been removed from his day program at WOC without her knowledge or consent and in violation of his ISP.  She said she also learned that Tim had been left alone in his group home during the day for the previous two months.

In a lengthy letter of explanation to Mary, dated in June 11, 2017, the then group home manager acknowledged that she had removed Tim from the day program, and apologized for  “…my failure to talk with you and get your permission/input/opinion…”

The group home manager’s letter stated that after a sheltered workshop program at WOC was terminated (along with all remaining sheltered workshops in the state as of 2016), the manager found that there was little for Tim to do at WOC. She said she then organized a series of other activities for Tim and planned to enroll him in a “wrap-around” program approved at CHD to replace the WOC program.

Mary responded to the group home manager in an email, saying that she wasn’t taking issue with the reasons the manager had listed in her letter for removing Tim from his day program, but with the fact that she had done it without Mary’s knowledge or consent.

Mary also told DDS that she was later told by a CHD supervisor that the supervisor was unaware Tim had been removed from the WOC program, and that CHD did not have a replacement wrap-around day program as the former group home manager had claimed.

Mary added that, “no one from CHD can tell me where Tim was and who he was with for those two months” during which he was removed from the WOC day program.

Not receiving Social Security funds

In March of this year, Mary discovered that Tim had not received his Supplemental Social Security Income (SSI) since 2017. The federal SSI funds were supposed to be sent to his account managed by the group home. The funding had lapsed due to CHD’s failure to update the Social Security Administration with current information about Tim.

For two years, Mary said, the group home did not receive Tim’s monthly SSI payment of $670 from which Tim was supposed to receive a $100 monthly stipend for his needs. The missed funding over the two years totaled $2,400 that Tim needed for items such as underwear, socks, pants, shorts, sneakers, and a spare set of sheets.

DPPC referred to DDS, which found no risk of serious harm

In March, Mary filed a complaint with the DPPC alleging both neglect and financial abuse in Tim’s CHD group home. Her complaint noted that Tim had not received SSI benefits for at least two years and that he had not been seen by a doctor and had been medically neglected for at least seven years.

A separate complaint from an anonymous reporter stated that $2,000 in clients’ food stamp benefits had been taken from the two CHD group homes in East Longmeadow and Wilbraham.  Both complaints appear to have been referred by the DPPC to DDS.  The DDS resolution letter, dated June 7, stated that the group home manager had resigned from the group home.

The resolution letter also concluded that there was no indication of serious risk of harm to Tim.  However, the letter stated that CHD had been required to respond within 30 days concerning: 

• Medical appointments that have not occurred as recommended in the provider’s residences.
• Oversight that exists to ensure proper medical care in those residences.
• An accounting of food stamps taken from group home residents.

Mary filed for reconsideration of the DDS letter, disputing the finding that Tim was not at risk. For years, she noted, he was denied medical attention to monitor a hole in his heart. He was further denied treatment from 2017 to 2019 for his back pain despite having been recently diagnosed with a degenerative back disk.

Mary also contended that Tim’s loss of two years of SSI income had caused him emotional distress due to a shortage of clothing, and that he is due back payment from CHD of at least $2,400.

Mary argued that CHD needs an individual to oversee and manage all Social Security representative payee duties, and needs to ensure renewal of all MassHealth and state IDs for all clients. She further called for a review of licensing of DDS group homes. “How could seven years of missed medical and dental appointments go unnoticed?” she asked. 

DDS licensure report doesn’t show any serious problems

DDS most recent online licensure report for CHD, which is dated  June 2017, did not note any issues with medical care in the CHD’s residential facilities except to state that medical plans for two residents “did not fully address all required elements.”

The licensure report stated that “the vast majority of individuals in the survey sample were supported to receive timely annual physical and dental examinations, attend appointments with specialists, and receive preventive screenings as recommended by their physicians.”

The licensure report stated that audits had been completed at six 24-hour CHD residential locations, but did not say how many residential locations the provider has in total.

In her June 2017 letter to Mary, the former house manager indicated that Tim’s home was going to be inspected as part of the DDS licensure process. Her letter stated:

…in  addition to my normal responsibilities I have been preparing for our licensing process (kind of like an audit) which is incredibly stressful.  I was chosen mid May…both of my houses…which prompted me to work 16-hour days for weeks and try to make sure everyone still was busy, happy and having a good life.

DDS has not provided answers to Mary’s questions

Mary said that to date, her questions to DDS about Tim’s care and how his group home was able to be relicensed have gone unanswered.  She said that during a May meeting to discuss Tim’s ISP, DDS and provider officials declined to discuss the many issues that she had raised.

“They only wanted to talk about correcting the ISP,” she said. “They all apologized (for the problems), but said ‘all we can do is move forward.'”

But while the officials said the former group home manager had resigned and a new manager was hired, Mary said that new manager quit in the beginning of May, telling her he was not receiving adequate support from the provider or DDS.

It isn’t surprising that DDS doesn’t want to talk about what has gone wrong in Tim’s group home for the past several years. It’s always much easier to say “let’s look forward.” But that is a prescription for continuing to repeat the mistakes of the past, and is, in fact, a tacit acknowledgement that the Department isn’t serious about addressing those problems.

We think the Attorney General’s Office needs to investigate this case and others like it as part of an overall investigation of the DDS group home system. After we met with staff of the AG in May, those officials expressed interest in undertaking such an investigation.

The Legislature’s Children, Families, and Persons with Disabilities Committee, has also done little or nothing that we know of to date to address or examine these issues. We have not heard of any results from two informational hearings that the Children and Families Committee held last year on abuse and neglect in the DDS system.

Massachusetts is a leader on many public policy fronts, but when it comes to care of the developmentally disabled, this state has a lot of catching up to do.