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We have questions for a legislative subcommittee reviewing employment of the developmentally disabled

October 8, 2019 17 comments

A special legislative subcommittee’s review of barriers to employment of persons with intellectual and developmental disabilities (I/DD) is long overdue, but it is unclear what direction the subcommittee will take on this important issue.

The “Workability Subcommittee” of the Massachusetts Legislature’s Children, Families, and Persons with Disabilities Committee has scheduled a public hearing on October 22 at 10:30 a.m. at the State House in Room B-1.

The hearing notice states that the Subcommittee is seeking to identify “solutions to promote opportunities for individuals with disabilities to participate and succeed in the workforce.”

Patty and Mark Garrity photo2

Patty Garrity and her brother Mark. After Mark’s sheltered workshop closed in 2016,  meaningful work activities came to an end for him. Mark is not capable of participating in a mainstream work environment, Patty says.

COFAR and our members plan to testify at the hearing. We haven’t been  consulted by the Subcommittee as part of its review, which began last spring and involved meetings with “disability advocates, employers, employees, and other stakeholders,” according to the hearing notice.

So on October 4, when we heard about the hearing, we posed questions in an email to the office of Representative Josh Cutler, chair of the Subcommittee and vice chair of the Children and Families Committee. Those questions were the following:

  • Does the Subcommittee recognize that there are some persons who do not have the capability to succeed in the mainstream workforce, or does the Subcommittee take the  position that all persons, no matter how profoundly intellectually disabled, can handle jobs in the mainstream workforce?
  • Is the Subcommittee also looking to promote work opportunities for individuals in their community-based day programs funded by the Department of Developmental Services?
  • Does the Subcommittee have data on the availability of mainstream workforce jobs for persons with I/DD? We have long been concerned that not nearly enough of those jobs exist even for those who are capable of doing them.
  • Is the Subcommittee aware that the Legislature has apparently never appropriated the level of funding sought by the Baker administration for training and other services to help prepare former sheltered workshop participants for mainstream work settings? If so, has the funding for that transition so far been adequate?
  • Does the Subcommittee support the continued payment of subminimum wages to persons with I/DD in order to enable them to get work opportunities either in mainstream or DDS settings?

In an email in response to us, Rep. Cutler declined to respond to our questions; but he did say they were “great questions” and that he would be interested in meeting with us. We are in the midst of scheduling a date for that meeting.

We have discussed employment issues involving people with I/DD in numerous blog posts and in legislative testimony since 2014 when the administration of then Governor Deval Patrick began closing sheltered workshops for persons with I/DD throughout the state.

The sheltered workshops were settings in which DDS clients did small assembly jobs and other piecework activities provided by area businesses. The participants usually received a nominal wage.

Many family members and guardians strongly supported the workshops; but the Patrick and then Baker administrations held to an ideology that the workshops “segregated” the participants from non-disabled workers, and that the participants would all be better off in mainstream, “integrated” job settings.

Here are some of our findings from our involvement with these issues over the past five years:

  • Starting in 2013, the Patrick administration worked closely with corporate DDS providers to close the sheltered workshops over the objections of the families of many of the participants. In doing so, the providers falsely claimed that the workshops did not allow for “community inclusion.” The providers also falsely claimed that the federal government was forcing all sheltered workshops to close in the state.
  • As of 2018, it was clear that the promise of the replacement of sheltered workshops in Massachusetts with mainstream integrated employment was not being realized. An unknown number of former sheltered workshop participants were being left without work of any kind in their DDS-funded day programs.
  • The position of Senator Elizabeth Warren and many others against the payment of subminimum wages to people with I/DD has made it even harder for those persons to find the kind of work they had previously enjoyed doing.

Patty Garrity is the sister of one of those former workshop participants who has been left without work opportunities. Her brother Mark is not able to work in a competitive, mainstream setting.

Garrity said she plans to testify at the October 22 Subcommittee hearing. “I want to explain that there are individuals like my brother Mark and his peers who are not minimum wage candidates,” she wrote in an email.  “There is still a huge void in Mark’s day and it is not going well…..going on 4 years now that I have been waiting for them to improve upon this and it is not happening.  Mark is happy to be with his peers, but all he is doing is shredding paper and he is bored.”

We hope the Subcommittee will pay close attention to the experience of Mark Garrity and others who have been left behind in the wake of the sheltered workshop closures.

Moreover we hope the Subcommittee does or will recognize that, as with so many other issues involving persons with I/DD, one size doesn’t fit all when it comes to employment.

There are many people for whom the mainstream, competitive workforce is not suitable. Their choices and the choices of their families and guardians should be respected.

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Nearly inaccessible DPPC data illustrates widely varying abuse problem among group home providers

September 19, 2019 7 comments

An analysis by COFAR of data provided by the Disabled Persons Protection Commission (DPPC) confirms what many families of persons with developmental disabilities know from often bitter experience.

That is that providers to the Department of Developmental Services of residential and other services have widely different track records of abuse and neglect.

Unfortunately, families and guardians must learn about those differences almost exclusively by trial and error. There is currently no online source of comparative information about abuse and neglect among providers in Massachusetts.

In our analysis (see chart below), we were able to identify which providers had the highest numbers of complaints lodged against them, the highest numbers and percentages of substantiated complaints, and the highest numbers and percentages of complaints referred for criminal investigation.

(See complete analysis of all of the providers with highest and lowest results here.)

If family members or guardians or members of the general public wanted this information on an ongoing basis, they would have to do what we did. First, we had to file a Public Records Law request with the DPPC for abuse data broken down by region and provider from Fiscal Year 2010 to the present.

Next we had to sort the regional raw data by provider, which the DPPC provided on spreadsheets, and literally count the number of complaints listed for each provider and the number of substantiations and referrals for investigation. It was a lengthy process that took us weeks to complete.

In sum, we tracked the disposition of more than 14,000 complaints lodged against roughly 120 providers, including DDS itself as a provider of residential services in developmental centers and state-operated group homes.

Of the total complaints tracked, an average of 116 were lodged against individual providers between Fiscal 2010 and 2019.

In addition, an average of 8 complaints per provider, or 6.7% of total complaints against providers, were substantiated after investigations supervised by the DPPC.

Finally, an average of 13 complaints per provider, or 11.2% of complaints, were referred to district attorneys offices for criminal investigation.

DPPC provider abuse data summary chart4

State-operated facilities tend to have lower percentages of substantiated abuse

While two state-operated group home networks had the highest number of complaints in the Northeast and Southeast regions respectively, the state-operated residences had below average percentages of complaints substantiated or referred for criminal investigation.

State-run developmental centers were at the bottom of the list in terms of reported abuse. The former Templeton Developmental Center (now state-operated group homes)  had only 25 complaints lodged in the 10-year time frame, and zero complaints substantiated or referred for criminal investigation.

The Wrentham Developmental Center had 71 complaints, but only 1 substantiated and none referred for criminal investigation. The Hogan Regional Center had 28 complaints, 1 substantiated, and 4 referred for criminal investigation.

Proposed legislation would require DDS to provide information online

Late last year, we asked Representative Daniel Cahill to file a bill in the current legislative session that would require DDS to post easily understandable, comparative information on its website about abuse and neglect and provider performance.

The bill (H.93), which is modeled on an online database in the state of Illinois, has been in the Children, Families, and Persons with Disabilities Committee since January.

We are urging people to call the Children and Families Committee at (617) 722-2011 (for Rep. Kay Khan, House chair) and (617) 722-1673 (for Senator Sonia Chang-Diaz, Senate chair), and urge the committee to vote favorably on the bill.

Results broken down by provider and region

In our Public Records request to the DPPC last February, we asked for abuse data broken down by DDS providers from Fiscal Years 2010 to the present. Based on our analysis of that DPPC data, the chart above contains a summary of the providers leading in various measures of abuse in each of five regions of the state.

As reflected in the chart above, among our preliminary findings regarding the DPPC’s data from Fiscal 2010 to 2019 are the following:

  • Vinfen, Inc. had the highest total number of abuse complaints among all providers reviewed in all regions (561). This compares to an average among all of the providers reviewed of 116 complaints.
  • Guidewire, Inc. had the highest number of complaints substantiated (46). This compares to an average among all providers of 8.
  • The Judge Rotenberg Center had the highest number of complaints referred for criminal investigation (80) and the highest percentage of total complaints referred for criminal investigation in a single region (31.82%).
  • The Judge Rotenberg Center led in two separate regions in total complaints or highest percentage of complaints referred for criminal investigation.

The Judge Rotenberg Center has long been a focus of controversy because of its practice of administering electric skin shocks to program clients as a behavior modification technique.

  • The May Institute led in two regions in most complaints substantiated or highest percent substantiated.
  • Community Resources for Justice led in one region in total complaints, total substantiated, and highest number referred for criminal prosecution, and in a second region in highest percent substantiated.

Need for investigation

We’ve sent our findings to the Attorney General’s Office, and intend to provide them to the Inspector General’s Bureau of Program Integrity when we meet with them this week.

We’ve long called for a comprehensive investigation of the DDS corporate provider-based system, which costs the state $1.2 billion per year and involves the operation of more than 1,800 group homes.

While the IG’s Bureau of Program Integrity found in 2017 and 2018 that there were financial irregularities in the state’s much smaller network of some 200 state-operated group homes, the Bureau has so far not issued any similar reports on the privatized provider system. In fact, there has been no systematic investigation, as far as we know, of the provider system in Massachusetts since the 1990s.

In 1997, the Legislature’s House Post Audit and Oversight Committee found problems of abuse, neglect, and financial irregularities throughout the DDS system. The Post Audit report stated that DDS’s oversight of privatized care, in particular, raised “grave doubts about (DDS’s) commitment to basic health and safety issues and ensuring that community placements provide equal or better care for (DDS) clients.”

Some caveats on the DPPC data

Our analysis has involved taking the raw data in each file from the DPPC, sorting that data by provider, and counting the total number of complaints for each provider that appeared to have more than a minimal number of complaints. We also counted the number of complaints substantiated and referred for criminal investigation over the time period for each provider, and then calculated the percentages for each provider of total complaints substantiated and referred. The high numbers in each category are highlighted on the linked spreadsheet.

We would note that many abuse complaints are referred by the DPPC to district attorneys that are screened out for investigation by the DPPC itself because they don’t fall under the DPPC’s statutory jurisdiction. As a result, the number of referrals to the DA’s are often higher than the number of complaints substantiated by either the DPPC or DDS.

One other caveat about this data is that the DPPC has acknowledged to us that the numbers of complaints, substantiations, and referrals in its data refer to intake calls that the DPPC receives regarding abuse. There may be multiple intake calls for each actual occurrence of abuse. So the DPPC numbers may inflate the actual number of cases or occurrences of abuse that the agency investigates or refers for investigation. However, that potential inflation in the numbers shouldn’t affect the relative percentages regarding providers in the data.

DDS launches ‘licensing review’ following allegations of poor care in provider’s group homes

August 12, 2019 13 comments

The Department of Developmental Services is conducting a “special licensing and program integrity review” in response to allegations of poor care in group homes operated by a provider licensed by the Department.

In an August 8 statement provided to COFAR, DDS Commissioner Jane Ryder also said that DDS is investigating the allegations and is requiring the Springfield-based provider, the Center for Human Development (CHD), to implement a corrective action plan. The Department has also conducted unannounced visits to the residences, Ryder stated.

“DDS takes the health and safety of individuals it serves very seriously, and is conducting a thorough investigation into the allegations,” Ryder added.

Ryder’s statement was provided nearly a month after COFAR asked for comment from her regarding a series of allegations raised by Mary Phaneuf, the foster mother of Timothy Cheeks, a 41-year-old resident of a CHD group home in East Longmeadow.

Last year, Phaneuf began raising concerns with CHD and DDS about Tim’s care, including a lack of proper medical care for Tim and no documented visits to a primary care physician or dentist for seven years. Phaneuf also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Last week, CHD acknowledged the missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences. Those problems include an alleged failure to ensure that Tim was receiving Social Security benefits for at least two years, and the alleged diversion of food stamp benefits from Tim and at least one other client.

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the DDS website did not mention those or similar problems in CHD’s group homes. It was not clear whether the DDS special licensing and program integrity review is intended to examine whether the DDS licensure process fell short in the CHD case.

The 2017 DDS licensure report for CHD did not appear to note any serious 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 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.”

In our July 9 email to Ryder, we asked “whether it is possible that the DDS licensure process is not sufficiently comprehensive or thorough to identify issues such as the ones cited (in the CHD case).”

COFAR also asked Ryder in that email whether DDS reviews abuse or other complaints or investigative reports as part of its provider licensure process. Ryder’s August 8 statement did not respond to either of those questions.

COFAR has called for a comprehensive investigation of the privatized DDS system, and has reached out the the Attorney General’s Office and to state policy makers and legislators for support for that. The Springfield Republican, which reported on Tim’s case last week, noted that Attorney General Maura Healey’s office recently met with COFAR, and quoted a spokesperson for Healey as saying they “are learning more about the issues they (COFAR) raised.”

The Republican  included a statement from James Goodwin, CHD president and CEO, apologizing for the issues raised by Phaneuf.

“The quality of our services — the care and support that CHD and Meadows Homes provide to our clients — is our most important value, and in these cases we have failed in not upholding that value,” Goodwin told the newspaper. “We apologize for these failures. We are committed to making the changes needed to regain the trust of our clients and families at Meadows Homes, and to continue to support their health and wellbeing.”

In a statement previously provided to COFAR, Goodwin listed a number of corrective actions that he said CHD has taken since January, including cataloging all medical visits in a database, tracking communication between guardians and caregivers, requiring more rigorous supervision of program leaders, and developing a system to automatically inform family members and guardians of medical appointments and their outcomes.

DDS group home provider acknowledges multiple clients missed dozens of medical appointments

August 6, 2019 16 comments

In the wake of a series of allegations identified by COFAR of poor care of a group home resident, the president and CEO of the nonprofit group home provider has acknowledged missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences.

The provider, the Center for Human Development (CHD), is funded by the state Department of Developmental Services (DDS). DDS relicensed CHD in 2017 after issuing a licensure report that did not appear to address those managerial problems.

In an August 1 statement provided to COFAR, James Goodwin, CHD’s CEO and president, said his organization has verified that eight clients in two of its group homes missed a total of 59 medical and dental appointments since 2015.

Goodwin said the missed appointments included primary care visits, specialty care visits, and eye and dental exams, and were “a result of failures to adhere to policies in two homes…”  He said it was “important to note that clients continued receiving prescription medications during this time, so many appointments were being kept.”

“We can’t comment on the specifics of an individual’s care,” Goodwin’s statement added. “We have identified instances of failures to follow protocols and isolated instances of inappropriate use of financial resources. All funds have been fully reimbursed. We acknowledge the need for improvement in oversight and strengthening of policies, and improvement in communications with family members and guardians, and we have taken substantial steps to make those improvements.”

Foster mother detailed a series of care problems

Goodwin’s statements were in response to a July 15 COFAR blog post, which detailed a series of problems with the care of Timothy Cheeks, a 41-year-old man with Down syndrome who lives in a group home managed by CHD in East Longmeadow.

Since late last year, Tim’s foster mother and guardian, Mary Phaneuf, has raised issues with CHD and DDS regarding 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. (Phaneuf first discovered and raised this issue with CHD in 2017);
  • The diversion of food stamp benefits for Tim and at least one other resident of a CHD group home; and
  • Erroneous information listed in Tim’s 2018 Individual Support Plan (ISP), including an untrue statement that Tim had visited a primary care physician in September of that year. The doctor listed had apparently not seen Tim since 2011.

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the department’s website did not mention those or similar problems in the agency’s group homes.

Corrective policies cited

Goodwin said that immediately upon discovering the “failures in the program” in early January, CHD began making “extensive reviews of and changes to policies, increasing oversight and documentation of clients’ medical care and adding additional safeguards against individual failures to adhere to protocols.”

The medical needs of all clients in the program who were affected are now being met, Goodwin said. He maintained that the program failures “can be traced overwhelmingly to the actions of a single staff member.” While Goodwin did not identify that staff member, he was reportedly referring to a former manager of two of CHD’s group homes.

Goodwin also stated that there was “no indication that failures such as these took place at any other CHD programs besides the two Meadows Homes programs.”

Goodwin also said CHD has identified “one instance of impropriety with a food stamp benefit check in one of these programs.” He said all misappropriated funds were immediately reimbursed and that there was “no impact on program function or service.”

In addition, Goodwin said, CHD recently identified one instance of a total of $2,100 in “client money being accessed inappropriately and we have reimbursed the funds.”

A June 7 DDS complaint resolution letter cited two clients affected in two separate residences as a result of an alleged food stamp diversion. Mary Phaneuf also contends Tim is owed $2,400 in missed Supplemental Social Security Income (SSI) funds.

Goodwin’s statement added that “staffing changes and appropriate disciplinary action (have been taken) for personnel involved.” A CHD vice president later declined to say how many employees have been disciplined.

DDS commissioner has not commented on the matter

DDS Commissioner Jane Ryder has not responded to a July 9 email from COFAR asking for comment on the overall case or “whether it is possible that the DDS licensure process is not sufficiently comprehensive or thorough to identify issues such as the ones cited here.”

COFAR also asked Ryder in that email whether DDS reviews abuse or other complaints or investigative reports as part of its provider licensure process.

CHD CEO’s statement largely focused on missed medical appointments

Goodwin’s August 1 statement largely focused on the allegations of missed medical appointments. That, however, was only one of many concerns that Mary Phaneuf said she brought to the attention of the provider’s managerial staff late last year.

Phaneuf told COFAR that while CHD did begin in January to address the problem of missed appointments, the provider did not inform her of any plan it had to discover or address the underlying cause of the long-term neglect.

Phaneuf contended upper-level managers at CHD failed to keep their promise of routinely updating her on managerial changes or issues that directly affected Tim. That changed only after COFAR’s July 15 blog post was published, she said.

“Promises made by CHD and DDS to keep me informed of their progress to improve systems and further discoveries of other violations never happened. Until the blog, I had been ignored for months,” Phaneuf wrote in an email.

Goodwin’s statement to COFAR listed a number of “corrective actions” instituted by CHD “immediately…upon discovering the missed appointments,” including the following:

  • “Scheduling and fulfilling appointments to account for those that were missed and otherwise supporting the fulfillment of medical needs of all clients who missed appointments.”
  • “Extensive reviews of and changes to policies, increasing oversight and documentation of clients’ medical care, and adding additional safeguards against individual failures to adhere to protocols.”
  • A requirement that “all medical encounters … be catalogued in a database accessible to all members of the care team.” The database was implemented in March, Goodwin stated.
  • “Regular reviews of medical documentation by nursing staff and senior managers…”
  • Implementation of “compliance software to facilitate more effective oversight of medical appointments.”
  • “More rigorous supervision of on-site and program leaders is now mandated and checked for implementation.”
  • “Development (now underway) of a new protocol to support greater family and guardian engagement in medical decision making and medical care, and a system of automatic updating of family members and guardians on medical appointments and their outcomes.” The new protocol is scheduled to take effect on August 12, a CHD vice president stated.

It is certainly a positive development that CHD has responded to, and taken responsibility for, at least some of Phaneuf’s allegations about Tim’s care; and the corrective actions, if adhered to, should begin to address those problems.

To us, Goodwin’s statement falls short, however, in failing to address all of the allegations, and in largely placing the blame for the situation on a single staff member. When medical appointments are missed for multiple clients over a period of years, the problem points to failures in oversight at top levels of the organization.

In fact, it would have been better if Goodwin had personally accepted responsibility for the issues that Phaneuf raised, and made it clear that he intends to re-examine CHD’s entire managerial culture.

In our view, DDS Commissioner Ryder’s failure to respond publicly regarding this case is unacceptable. Unfortunately,  Ryder has established a disturbing pattern of circling the wagons and not publicly commenting when confronted with questions about her department’s responsibility for problems in the system.

We would also hope that Ryder and other top policy makers in the administration and the Legislature will begin to acknowledge that the problems in this case are not unique. Systematic shortcomings in the care of persons with developmental disabilities in Massachusetts are ongoing and are being made worse by the expanding privatization of services.

A comprehensive investigation of the DDS system is needed, and we would love to see the governor, attorney general, DDS, and key state legislators support that idea.

DDS license staff didn’t appear to notice problems mounting for resident at group home

July 15, 2019 4 comments

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.

Mary Phaneuf and Tim Cheeks1

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.

The late Judge Joseph L. Tauro honored at memorial service

June 12, 2019 9 comments

The late United States District Court Judge Joseph L. Tauro, who paved the way for improved care for thousands of persons with developmental disabilities in Massachusetts, was honored on June 7 in a memorial service at the Moakley federal courthouse in Boston.

From 1972 through 1993, Judge Tauro oversaw Ricci v. Okin, a combined class-action lawsuit first brought by the late activist Benjamin Ricci over the conditions at the Belchertown State School. The lawsuit resulted in a consent decree that included the then Belchertown, Fernald, Wrentham, Dever, Monson, and Templeton state schools.

Photos courtesy of Ed O.

Portrait of Judge Tauro at the Moakley courthouse memorial service

Tauro, who died in November at the age of 87, had visited Belchertown and the other Massachusetts facilities in the early 1970s to observe the conditions first hand. He noted two decades later in his 1993 disengagement order from the consent decree that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements.

Together, those improvements and placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world,” Tauro wrote.

Among those attending the June 7 memorial service were former Governor Michael Dukakis, who signed the consent decree in 1975 on behalf of the State of Massachusetts, and Beryl Cohen, the original attorney for the plaintiffs. 

Speakers at the June 7 service included U.S. Supreme Court Associate Justice Stephen G. Breyer, Senior U.S. District Judge Michael A. Ponsor, Governor Dukakis, and Major League Baseball Commissioner Robert D. Manfred Jr. Manfred, an attorney, clerked for Tauro after graduating from law school.

Also attending the service were Ed and Gail Orzechowski, advocates for persons with developmental disabilities. Ed Orzechowski’s 2016 book, You’ll Like it Here, chronicled the life of the late Donald Vitkus, a survivor of the Belchertown school.

In March, as Ed Orzechowski received the 2019 Dr. Benjamin Ricci Commemorative award from the Department of Developmental Services, he credited three men with improving the lives of persons with developmental disabilities in Massachusetts — Benjamin Ricci, Beryl Cohen, and Judge Tauro.

Ed O. and Dukakis at Tauro service

Ed Orzechowski (left) with former Massachusetts Governor Michael Dukakis, who signed the 1975 consent decree in the landmark Ricci v. Okin lawsuit overseen by Judge Tauro.

Gail and Beryl Cohen at Tauro service

Gail Orzechowski, an advocate for the developmentally disabled (left), with Beryl Cohen, the attorney for the plaintiffs in the 1972 class action lawsuit, Ricci v. Okin. Gail’s sister, Carol, is a former resident of the Belchertown School.

Program remembrance of Judge Tauro

A written remembrance of Judge Tauro in the memorial service program.

 

 

 

Federal deinstitutionalization bill would lower human services care standards

May 31, 2019 5 comments

Unfortunately, the entire Massachusetts congressional delegation has signed onto a newly filed bill in Washington, which, as currently written, would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

In Massachusetts, the bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would threaten the Wrentham Developmental and Hogan Regional centers, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

Moreover, we think the bill does not comply with the law under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., which recognized the value and legitimacy of institutional or congregate care for those who want and need it.

HR.555 (and the Senate version, S.117) calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added).  The legislation specifies that the federal government would provide funding for technical assistance to states “to prevent or eliminate institutionalization” of persons with developmental disabilities.

This language does not comport with Olmstead, which held that that the Americans with Disabilities Act (ADA) does not condone or require removing individuals from institutional settings when they are unable to benefit from a community-based setting. In addition, the ADA does not require the imposition of community-based treatment on patients who do not desire it.

At the very least, the language in this bill should be changed to respect the choice of individuals, families, and guardians, either to apply to get into, or to remain in congregate-level care facilities.

So far, we have made our concerns known to the office of Senator Elizabeth Warren, and have requested that Warren reconsider her co-sponsorship of the bill. A staff member said the office will look into our concerns and will convey them to the office of Senate Minority Leader Charles Schumer, the lead sponsor of the bill.

We plan to contact the office of Senator Edward Markey and other members of the Massachusetts delegation as well.

Failure to acknowledge problems with deinstitutionalization

HR.555 perpetuates the myth of institutions as providing “segregated” care. It fails to acknowledge the relentless pursuit of deinstitutionalization in recent decades, which has caused “human harm, including death and financial and emotional hardship.”

What the bill particularly fails to take into account are the major upgrades in care and standards in congregate-care facilities since the 1970s, largely as a result of federal lawsuits brought in Massachusetts and other states.

The irony is that while those lawsuits also led to the introduction and growth of privatized, community-based care throughout the country, poor oversight and low pay and training of staff in the privatized group-home system has recreated many of the warehouse-like characteristics of large institutions prior to the 1980s.

The bill falsely purports to encourage choice

HR.555 states that its purpose is “to clarify that every individual who is eligible for long-term (human) services and supports has a federally protected right to be meaningfully integrated into that individual’s community…” in order to receive those services and supports.

But the bill states that a group home or other facility can only be considered community-based if it has four or fewer unrelated residents. That is an unworkable and actually choice-limiting proposition that is almost as radical as the position of the National Council on Disability that an institution is a facility with four or more people who did not choose to live together.

So, while the bill purports to be in favor of choice, the only choice it recognizes as valid is a community-based setting; and that means a residential setting with four or fewer residents.

But the Supreme Court held in Olmstead that congregate care is appropriate for some persons with developmental disabilities. In Massachusetts, we have repeatedly heard from families and guardians who are satisfied with the high level of care delivered in the Wrentham and Hogan centers.

The people remaining at Wrentham and Hogan are more profoundly disabled and have more serious medical issues on average than in other DDS settings. These people need the intensive care that is regulated by ICF-level standards. HR.555 does not recognize the distinctions or the different levels of care needed by different individuals.

In fact, the real purpose of the bill, in our view, is to eliminate the choice of ICF-level care, which is based on strict federal standards for staffing, in particular.

The political impetus to close all remaining congregate care settings comes, as it has for years, from state-funded, corporate human services providers, who have a conflict of interest because they stand to gain additional state contracts as state-run facilities are closed and their functions are privatized.

Massachusetts, as do most states, allows the providers to operate under a waiver of the ICF regulations, which permits lower standards of care for community-based services. Even so, the cost of that care is oustripping the ability of states to pay for it.

The cost is not identified

HR.555 would require states to offer community-based services immediately to all persons needing such services, and those jurisdictions would not be allowed to impose cost caps or use waiting lists. The bill, however, does not identify what the cost of such a requirement would be or where the funding would come from.

The VOR, which advocates nationally for persons with developmental disabilities, calls the bill “clearly unaffordable.” Simply encouraging, funding, or requiring the transfers of more people out of institutions into community-based care will only exacerbate problems in the latter system.

To the extent that the bill recognizes the cost of care, it attempts wrongly to place the blame on institutions. It refers to “billions of dollars in unnecessary spending related to perpetuating dependency and unnecessary confinement.”

This statement, however, does not recognize the high cost of executive salaries and of mismanagement in the community-based system. In Massachusetts, the cost of institutional care is less than 10% of the cost of privatized, community-based care.

The bill, however, does appear at least to recognize that there are costs in providing community-based care because the bill would require states and providers to review their funding sources and analyze “how those funding sources could be organized into a fair, coherent system that affords individuals reasonable and timely access to community-based long-term services and supports.”

Such a review sounds reasonable, and we think it should be done before legislation is enacted that would encourage further deinstitutionalization. As noted, the deinstitutionalization required by this bill would place a significant financial strain on the community-based care system for which no additional funding has been identified.

We would suggest that people contact the members of the Massachusetts congressional delegation, whose contact information can be found at this site: https://lwvma.org/your-government/federal/.

We hope all of the members of the delegation will reconsider their support of HR.555 and S.117.