Archive

Posts Tagged ‘developmental disabilities’

A newspaper’s coverage of abuse and the enactment of Nicky’s Law are steps in the right direction

January 21, 2020 2 comments

One newspaper in Massachusetts has been shining a spotlight lately on the problem of abuse and neglect of persons with developmental disabilities in the state.

Meanwhile, the state Legislature took a strong step last week in barring abusive caretakers from working for providers in the system.

Yet these two positive developments also highlight the fact that the media in Massachusetts in general and the Legislature as a whole have to do more than they have been in recognizing ongoing problems in the care of persons served by the Department of Developmental Services (DDS).

As we have long maintained, these problems have gotten steadily worse as functions and services for the developmentally disabled have been steadily privatized over the years without sufficient oversight of the corporate provider-based system.

One newspaper’s systematic coverage and one important legislative victory appear to be the exceptions to the rule, which has generally been one of benign neglect on the part of the media and Legislature.

The media exception has been The Springfield Republican, which published an in-depth report on January 10 about a DDS corporate provider, Guidewire, Inc. The newspaper revealed, among other disturbing facts, that at a Springfield group home operated by Guidewire, staff encouraged residents to fight each other and awarded prizes including money, cigarettes, marijuana and alcohol.

Perhaps not coincidentally, the article ran just a few days before the Massachusetts House unanimously approved a bill that would create a registry of caregivers found to have committed abuse or neglect. Such persons would be banned from future employment in DDS-funded facilities. The bill known as “Nicky’s Law,” which was passed by the Senate in October, is expected to be signed into law by Governor Baker within the next 10 days.

A few days before the Springfield Republican article ran, the same newspaper published a follow-up to COFAR’s blogsite report about the termination of a DDS contract with another DDS provider, the Center for Human Development, to operate two group homes in which care was found to be substandard. In that case, COFAR had first reported allegations of poor care raised by the foster mother of a resident of one of the group homes.

Last year, the Republican followed up on COFAR’s initial reporting on CHD, and ran a comprehensive article about the failure of DDS’s licensure inspection process to identify ongoing problems in the two CHD group homes.

Both the reporting by the Republican and in COFAR’s blog posts helped to spur an internal investigation of CHD by DDS. Last fall, the DDS Bureau of Public Integrity cited potential “systemic issues” across CHD group homes.

Guidewire details underscore the need for Nicky’s Law

According to the Republican. eight employees of Guidewire were fired after the “fight club” details were brought to the attention of DDS in 2011. But the employees were given the right to return to work at other DDS-funded facilities in 2018. And while Guidewire was subject to a corrective action plan and staff were retrained, no criminal charges were filed in the case.

To that extent, the Guidewire case underscores the need for Nicky’s Law, which would potentially have prevented DDS from continuing to employ those caregivers.

Persons applying for caregiver positions in the DDS system currently must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states. However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the Disabled Persons Protection Commission (DPPC), it does not usually result in criminal charges. As a result, those findings of substantiated abuse are not made known to providers or other agencies seeking to hire caregivers. That’s why an abuse registry is needed in Massachusetts.

The Springfield newspaper cited COFAR’s own findings last September in which we identified Guidewire as one of the service organizations in the state with the most abuse complaints filed, substantiated and referred for criminal prosecution.

More recently, we analyzed DPPC data on a per-client basis to control for size of each provider, and found that between Fiscal 2010 and 2019, Guidewire was third highest out of 75 providers surveyed in the number of substantiated abuse cases per client. Guidewire was third as well in complaints referred per client for criminal investigation.

But abuse and poor care are problems that go far beyond one provider. COFAR analyzed the outcomes of more than 14,000 abuse complaints in the Fiscal 2010-2019 period.

Rest of the media needs to examine these issues

The Springfield Republican’s reporting shows the good things that can happen when the media shines a light on issues and activities that are causing harm. But it usually takes a commitment and cooperation among several media outlets to place these matters on the agenda of politicians and policymakers in order to bring about real change.

Unfortunately, with the exception of the Republican, the mainstream media in this state has shown little interest in systematically reporting on the serious problems that afflict the care of persons with developmental disabilities in the DDS system.

Major investigations have been undertaken of abuse of the developmentally disabled in group homes by newspapers in other states in recent years. Those reports include multi-part exposes starting in 2011 by The New York Times, in 2013 by The Hartford Courant, and in 2016 by The Chicago Tribune.

The mainstream media in Massachusetts has yet to to pay more than passing attention to the DDS system. We have also not had any success in getting a response from The Boston Globe to our concerns about currently proposed legislation that would make the state’s process of investigating abuse of the developmentally disabled far less transparent.

Children and Families Committee has yet to demonstrate a serious concern about the issues

We are also trying to persuade the state attorney general and the Legislature’s Children, Families, and Persons with Disabilities Committee to begin seriously looking at these issues. While we applaud the role played by the Children and Families Committee in getting Nicky’s Law enacted, the committee has yet to demonstrate a sustained commitment to examining and addressing the problems within the DDS system.

In 2018, the Children and Families committee held two informational hearings on abuse and neglect in the DDS system. But members of the general public were not permitted to present verbal testimony at either hearing, and the committee never followed up on those hearings with a report. It’s not clear what, if any, the purpose of those hearings was.

In the final analysis, media attention and the attention of legislators and policymakers are linked. Legislators, in particular, are not likely to act to address society’s problems if the media isn’t focusing on those problems. It seems we’ve entered an age in which the media’s attention is more fractured than ever before.

The enactment of Nicky’s Law is one example of a piece of legislation that the media did get behind. Yet, the enactment of that law is just a first step in what needs to be a comprehensive reform of the system.

Every now and then, a media outlet like The Springfield Republican gives us hope that there still are journalists out there who will go further than reporting on one bill and will examine the issues underlying the legislation.

Once the media focus is there, we think legislators and policymakers will act more systematically on issues of concern to those people they are supposed to protect — the most vulnerable people in society.

 

 

A disability abuse investigation agency bill has two words in it that could authorize the agency to seal all its investigative records

January 15, 2020 Leave a comment

We are expressing concern over two words in a bill concerning the state Disabled Persons Protection Commission (DPPC) that could authorize the agency to seal all of its investigative records regarding abuse of persons with disabilities in Massachusetts.

In an email we sent this week to state Representative Aaron Michlewitz, chair of the House Ways and Means Committee, and other key lawmakers, we pointed out the potential problem inherent in the language of Section 17 of what is now H.4231. The bill section would change the DPPC’s enabling statute to state that “all confidential information” in the DPPC’s possession shall not be a public record.

The DPPC is the state’s only independent agency charged with investigating allegations of abuse and neglect of adults under the age of 60 with developmental and other disabilities. The DPPC has jurisdiction over a wide range of investigations done by its own staff and the staff of a variety of other agencies.

Those are the two problematic words in Section 17 of H.4231: “confidential information.”

We have no objection to a separate portion of the same sentence in the section stating that “all personally identifying information” shall not be public. But the “confidential information” phrase is poorly defined and so overly broad that we think it would give DPPC the discretion to label virtually anything it wants as confidential and therefore secret.

We are asking people to call the House Ways and Means Committee at (617) 722-2990, and simply urge them to take the words “confidential information” out of Section 17 of H.4231.

As we understand it, Section 17 was recently reworded by the Children, Families, and Persons with Disabilities Committee to respond to concerns we raised last year that the section would potentially make most of the records of the DPPC non-public. The reworded language would be fine with us if the House Ways and Means Committee would simply take out those two words.

Here’s our reasoning for this, in a nutshell:

Right now, DPPC’s enabling statute (M.G.L. Chapter 19C) simply says that the Commission should “…disclose as little personally identifiable information as possible.” There is no reference in the enabling statute to “confidential information.” The enabling statute, moreover, invites the presumption that the agency’s records overall are public. Nowhere does the enabling statute state that the DPPC’s records, in general, are not public.

The DPPC’s regulations, however, do refer to “confidential information,” and define it as including “personal data” and “any and all notes, papers, documents or other investigative materials, including but not limited to interview summaries, collected or compiled by personnel duly authorized by the Commission during the course of an investigation.”

This DPPC regulation (118 CMR 9.03) also specifically states that: “The records of the Commission shall not be considered ‘public records'” (my emphasis).

So, there are at least two inconsistencies between the DPPC’s regulations and its enabling statute, and it would seem that what DPPC is trying to do is make its enabling statute consistent with its regulations in stating at anything that it considers “confidential” is not a public record. As we’ve said before, though, this is a bad direction for DPPC to go. It should change its regulations to be consistent with its enabling statute, not the other way around.

It would seem that what DPPC wants to do is to be able to say that all investigative materials of any kind are potentially confidential and therefore not public records. That is bad news for the public’s right to know.

We actually don’t think Section 17, as a whole, of H.4231 is necessary for reasons I’ll get to below. But, as noted, what we are recommending is that, at the very least, the House Ways and Means Committee remove the words “confidential information” from the section.

Our argument with respect to Section 17 and to DPPC’s secrecy regarding its records in general has always been about the public’s right to know. Complaint-specific information can be a key window into the nature of problems of abuse and neglect in the care of persons with disabilities and in how the state deals with those problems.

Section 17 isn’t necessary

As noted, we don’t think Section 17, as a whole, of H.4231 is needed. The DPPC’s enabling statute, as currently written, gives DPPC the discretion to block “personally identifiable” information, and so does the state’s Public Records Law itself.

The Public Records Law (M.G.L. Chapter 4, Section 7, Clause 26) specifically exempts from disclosure  “data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy.” The Public Records Law further exempts “investigatory materials…the disclosure of which materials would probably so prejudice the possibility of effective law enforcement that such disclosure would not be in the public interest.”

The Public Records Law presumes state agency records are public

As the Secretary of the Commonwealth has opined, the state’s Public Records Law presumes all state agencies’ records are public unless a specific exemption in the Public Records Law applies to those records. The first exemption listed in the Public Records Law, known as “exemption (a),” is the enactment of another statute that exempts records of any kind from disclosure.

If Section 17 of H.4231 is enacted as currently drafted, it would change the DPPC’s enabling statute to specifically prevent the disclosure of any material deemed “confidential.” As a result, if any member of the public were to ask for any information that DPPC considered confidential, DPPC could invoke Exemption (a) of the Public Records Law without having to demonstrate that the information was personally identifiable or that it would prejudice effective law enforcement.

DPPC could simply refer to the vague “confidential information” phrase in its enabling statute, and the agency could forever seal those records from public disclosure. The state Public Records Supervisor’s hands would be tied in those cases if anyone were to file an appeal of the denial of the records by DPPC.

So, once again, we believe the potential problem we have described can be avoided by the simple removal of the words “confidential information” from Section 17 of H.4231.  We hope the House Ways and Means Committee does that, or, better yet, removes Section 17 altogether.

DDS terminates contract with provider to operate two problematic group homes

January 7, 2020 7 comments

The state Department of Developmental Services (DDS) has terminated a contract with a corporate provider to run two problematic group homes in East Longmeadow for persons with developmental disabilities.

The contract termination with the Springfield-based Center for Human Development (CHD) was confirmed to COFAR on Monday (January 6) by the provider.

The DDS action, which appears to be relatively unusual for the department, came after Mary Phaneuf, the foster mother of a resident of one of the group homes, alleged poor care in her son’s residence. She said she was told by DDS that due to the contract termination, her son, Timothy Cheeks, and other residents in his home will have to move this month to another residence operated by another provider in Longmeadow.

Starting in 2018, Phaneuf alleged a lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years. She also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Phaneuf’s allegations led to DDS investigations last year, which found “potential systemic issues” throughout CHD’s residences, according to a DDS summary document obtained by COFAR. Her allegations also led to the adoption of new management policies by CHD.

Mary Phaneuf and Tim Cheeks2

Tim Cheeks with his foster sister Nicole Phaneuf Sweeney

COFAR’s blog posts in July and in August concerning Phaneuf’s allegations, and coverage by The Springfield Republican, led to the DDS investigation of the provider.

No comment yet from DDS

As of today (January 7), DDS had not responded to an email from COFAR on December 18 seeking comment on the status of CHD’s contract to operate the residences or the results of its investigations.  In the same email, which was addressed to DDS Commissioner Jane Ryder, COFAR also requested completed reports and action plans in the case, under the state’s Public Records Law. 

As required by the Public Records Law, DDS did respond on January 3 to the public records request in COFAR’s email, saying that the department expected to produce the requested documents by January 10.

COFAR also sought comment on December 18 from CHD. In an email in response on January 3, Ben Craft, vice president of community engagement for CHD, stated the following:

CHD is fully engaged in comprehensive changes in policy and operations to return and sustain the quality of our DDS services to the high standards that we have upheld across our organization for nearly fifty years. Substantial implementation of these improvements has already occurred, and that work continues.

CHD will continue to work hand in hand with DDS to help ensure that our system of care for people with disabilities is meeting their needs while at the same time empowering them to live with the highest degree of independence possible. CHD will actively participate in continuing dialogue with DDS and other state partners about opportunities to improve public-private partnership in service delivery and policy.

Regarding the continuing operation of the two residences, Craft said in the email that CHD, which owns one of the two homes in question, had entered into a lease arrangement for that residence with the new provider, Mental Health Association, Inc. (MHA), “to ensure a smooth transition as MHA prepares homes to accept individuals now being served by MHA.” MHA is also based in Springfield.

Phaneuf said she was told the lease is temporary and that is why her son and the other residents of his home will have to move later this month to an MHA-run group home in Longmeadow. Phaneuf said she was told that two CHD employees from the original house would transfer to her son’s new residence, but would be employed by MHA.

DDS found “potential systemic issues” with CHD

In December, Phaneuf forwarded to COFAR an untitled and undated summary document from DDS about the investigations by its licensure office and its financial investigation unit of CHD. The DDS summary document appears to contradict previous statements by CHD that the problems Phaneuf raised were largely the result of mismanagement by a single staff member – a former house manger of Tim’s group home.

The summary of the review by the DDS Bureau of Program Integrity, which appears to date from September, specifically stated that:

While some of the issues (raised by Phaneuf) can be attributed to the former house manager, the lack of oversight and control procedures are indicators of potential systemic issues across CHD homes.

The DDS summary document also cited a “significant volume of missing and erroneous records provided by CHD” for DDS’s review, and recommended that a full audit of client funds records for all of CHD’s DDS-funded group homes be done by an external agency or firm. The document also said that the “complete independent audit” should cover a two-year period.

In addition, the DDS document stated that while there was no direct evidence of fraud by CHD, the agency must provide complete restitution of the personal funds “for which they cannot provide validation of appropriate expenditure.”

The DDS document also cited a failure by the former house manager to maintain financial transaction  records, and a lack of communication between the corporate business office and house manager around financial transactions.

CHD did not fully implement new policies

According to the DDS document, a review by the DDS Office of Quality Enhancement, the department’s provider licensure unit, found that as of September, CHD had not fully implemented new policies, oversight, or checks and balances that were adopted in January. The OQE recommended that CHD “improve its service delivery, with a focus on training and supervision of staff, healthcare coordination, and management of individuals’ benefits and personal spending money.”

The OQE also noted in the summary document that:

  • Despite heightened focus over past 7 months, some individuals’ medical needs were still not being met.
  • CHD’s Social Security representative payee and funds management procedures needed to be “thoroughly examined and modified.”
  • Promising oversight mechanisms such as quality assurance audits had not been fully implemented.
  • CHD needed to ensure that staff in key management and supervisory positions in Tim’s and the second CHD group home were “thoroughly knowledgeable of DDS regulations, policies, and licensing standards.”

Tim’s weight gain and subsequent medical diagnosis not reported

In August, in the wake of COFAR’s blog posts about the case, CHD announced that it had adopted a series of new policies to better manage and track care in its group homes, including a system to automatically inform family members and guardians of medical appointments and their outcomes. That new family information system was scheduled to be implemented in that same month, according to CHD.

However, Phaneuf said that in September, she noticed Tim had gained a considerable amount of weight in a short period. She said she met with Tim’s primary care doctor on September 10th and learned only then that in late July, Tim had been found to have gained 20 pounds and that medical lab tests had been ordered.

In an email sent to CHD officials on September 11, Phaneuf said the doctor told her the lab tests showed Tim was prediabetic and had hypothyroidism, and that he needed to be placed on a low-carbohydrate diet with daily exercise immediately. “I was not aware of any of this (prior to speaking to Tim’s doctor),” Phaneuf said.

Phaneuf said that after she contacted DDS and CHD about the situation, CHD failed to provide her with an outline of a proposed  food or exercise plan. And at Tim’s Individual Support Plan (ISP) meeting in October, Phaneuf said she was informed that as of that date, no trainings had been scheduled for the staff regarding a low-carb diet or exercise plan for Tim.  

Phaneuf said that while CHD said it would pay for Tim to see a nutritionist  since his insurance would not cover one, Tim does not have the cognitive ability to adequately process nutritional counseling nor does he have control over his own food. CHD shops, cooks and serves food to Tim, she said.

In his January 3 email, Craft said that CHD could not comment “on specifics of individuals’ medical care.” His email added that, “however, CHD program and leadership staff have maintained regular communication with family members and guardians about medical care, and CHD has done everything possible to ensure all individuals’ health needs are met.”

Phaneuf never received written notice from DDS of the pending closure 

Phaneuf said that in December, she was informed verbally by a DDS official of the termination of the CHD contract for Tim’s group home and the need for him to move to another residence. She said that as of Monday (January 6), she still had not received a written notice from DDS about either of those developments.

CHD a “large, multifaceted organization”

According to its online 2017 DDS licensure report, CHD is “a large, multifaceted organization” that “continues to maintain services throughout western Massachusetts as well as Connecticut.”

As of the start of the current fiscal year, CHD operated 23 DDS-funded group homes in Massachusetts, serving 76 clients, according to data from DDS.

CHD’s most recent online fiscal report to the state, which was for Fiscal 2018, showed that CHD received total operating revenues of $98.4 million primarily from a variety of state agencies, including $9.7 million from DDS.

Questions remain

While the contract termination action by DDS is welcome, it still raises a number of questions, including why the department’s provider licensure system itself did not identify the problems.

Little or nothing was initially done by DDS in response to Phaneuf’s concerns, and no investigations occurred until after COFAR posted about the case last July and there was subsequent coverage about it in The Springfield Republican.

COFAR has never gotten an answer from DDS as to why the normal DDS licensure review of CHD in 2017 did not flag any of the issues that Phaneuf subsequently raised. DDS, as ususal, appears to have reverted to its usual mode of not commenting or issuing any information in response to our queries that isn’t specifically required under the Public Records Law.

As we’ve said many times before, the problems finally identified regarding CHD are not unique to this one provider, but appear to be systematic across the entire DDS provider network. Over the past year, we have met with key lawmakers and with several state agencies, including the offices of the attorney general, inspector general, and state auditor to suggest the need for a comprehensive investigation of the DDS group home system.

A tribute to Tom Doherty and to the Wrentham Developmental Center

December 25, 2019 Leave a comment

(Note: We are reprinting a recent letter to Department of Developmental Services Commissioner Jane Ryder from Mary Ann Ulevich, a cousin and sole guardian of Thomas Doherty. Tom, who was a resident of the Wrentham Developmental Center, died on October 24 at the age of 68.

Mary Ann is a COFAR member and a member of the Wrentham Board of Trustees and of the Wrentham Family Association.)

November 15, 2019

Jane F. Ryder, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, MA 02118

Dear Commissioner Ryder,

Thank you for your letter of condolence following the death last month of my cousin Thomas Doherty, for whom I was guardian, at Wrentham Developmental Center.

I want you to know how pleased I, and Tom’s family, have been with Tom’s care throughout his more than 46 years as a client of DDS. When Tom returned home to Woburn, MA, from more than 10 years at Devereux Center in Pennsylvania, he was placed at Templeton Developmental Center (then part of Fernald Center). He enjoyed frequent visits with his parents in Woburn, and thrived in the Templeton community.

Following his mother’s death in 1997, I was named co-guardian with his aunt. Since 1998, I have been his sole guardian. When Templeton was closing in 2011, I had the daunting task of deciding upon an alternate placement for him. Recognizing that he had been in care facilities for almost 40 years and was thriving and happy, and in consultation with DDS staff, I decided to place Tommy at Wrentham Developmental Center. I believe this decision honored his mother’s wishes for him to be cared for, challenged to develop his many talents, and to be safe in his home and community.

Mary Ann Ulevich and Tom Doherty

Mary Ann Ulevich and Tom Doherty

The Wrentham staff welcomed Tom in December 2011. His transition was smooth, thanks to the sensitive, professional care extended him and to me, his guardian. Tom lived with six other residents in Oak Grove 1 cottage on the grounds of Wrentham, where he had his own room, enjoyed listening to his Beatles, Lennon Sisters and other much loved record albums.

He watched General Hospital, westerns, and the Red Sox on TV. Tom worked Monday through Friday in the dining room, enjoyed group activities including shopping trips to Patriots Place, eating out at local restaurants, and outings to ball games (including two trips to Spring Training), visits to Cape Cod, apple picking and local fairs. The folks at the town bank, drugstore, and coffee shops knew him by name and mourned his death, along with the WDC community of residents and staff. He loved getting mail, especially if pictures of family were enclosed.

Tom delighted in seeing cousins, however distant, and his affection for them was disarming. His memories of his parents and family were filled with happiness. Tommy’s pleasures were simple…the Red Sox, the Beatles, his family picture albums, a good day at work, coffee, a cigar now and then, and his time with friends and staff.

Tom died last month of esophageal cancer. His care at WDC was outstanding. His diagnosis was made at Dana Farber, and treatment was coordinated with the talented medical staff at WDC. More than once, medical staff at Dana Farber commented on how well Tom was physically cared for at WDC and how professional the WDC medical team was in working with them.

I and WDC caregivers accompanied Tom to his medical appointments, and I too can attest to the professional and compassionate care that flowed naturally from this outstanding WDC staff. Tom’s WDC social worker provided consistent support for all of us – Tom, the WDC staff, the hospice team, and family. Tom’s wish to remain in his home, with his friends and staff, was gracefully accommodated with a beautiful team effort. His final weeks saw him celebrated with music, a trip to Fenway Park, and a party in his honor attended by scores of friends. In his last days, he was visited by employees of every department at WDC, by retired employees, and members of the community.

Tom’s funeral, held at WDC with a funeral Mass celebrated by the local church pastor, was a testament to the caregivers/staff at WDC. Together with family, the staff and residents planned and participated in every detail, down to the last song, Let it Be. Yes, Tom was loved by his family, but he was cherished by those who lived and worked at Wrentham. His funeral was attended by more than 120 mourners, prompting my brother to ask me, “Who are these people?”  The vast majority were the loving, compassionate folks who work at WDC.

I could go on. But I just want you to know how proud you can be of the work carried out at WDC. I know that the philosophy of care for those with intellectual disability is to provide support to remain in their community with their families, with guidance and services.  I fully support this contemporary approach, but acknowledge that there are many who because of their history and challenges, and/or because of the progression of their needs combined with diminished family and community resources, can and do thrive in facility-based care.

Our experience affirms the quality of life that is possible in a facility like WDC. And it was made possible by the community that is WDC – its staff. I could list countless staff providing extraordinary, creative care under the leadership of the director, Judi Lydon-Ruby. Every department, from administration through maintenance and medical teams and social services and contracted services and direct care staff and volunteers, has as their focus the care and safety of the vulnerable people entrusted to them. Their compassion, longevity, and commitment affirm the accumulated wealth of experience that defines the care at WDC.

On behalf of Tom and our family, I thank you and the exemplary staff at Wrentham for ensuring Tom’s rich and rewarding life.

Sincerely yours,

Mary Ann Ulevich

A recap of our cases of abuse and neglect in the DDS system

November 18, 2019 7 comments

We receive calls on a regular basis from family members and guardians of persons in the Department of Developmental Services system who are dealing with, abuse, neglect, poor care, and related issues.

We always try to help where we can by offering advice and working with the Department of Developmental Services and other agencies and organizations to rectify the situations, and, in some cases, informing the public about the matters through our blogsite and newsletter.

Below are summaries of some of the major cases that have appeared on this blogsite in recent years. We’re happy to say that at least some of these cases were ultimately resolved favorably for the individuals, families, and guardians involved; but these cases are all disturbing signs of a broken system.

Most, though not all, of the cases brought to our attention have involved incidents that occurred in group homes or day programs operated by corporate providers under contract to DDS. We occasionally get calls about incidents in state-operated group homes, and some of those cases are summarized below. In many instances, however, problems were ultimately solved when victims or other clients involved were transferred from provider-run to state-run facilities.

That’s one reason we have advocated for so long for the preservation of state-operated group homes and the two remaining DDS-run developmental centers. It has been our experience that the rapidly expanding privatization of residential and other DDS services has created a race to the bottom in terms of care and services — a system in which abuse and neglect are rampant.

Every year, as state funding for the provider-run residential line item has risen, the number of abuse complaints received by the Disabled Persons Protection Commission (DPPC) has risen as well. In many cases, the DPPC and other agencies lack resources to adequately investigate these complaints. That is reflected in the individual stories that we hear when people call us.

In one of the cases we’ve included below, a young woman endured poor and in some cases life-threatening care in a series of provider-run facilities and a state-operated residence until she was finally admitted to the Wrentham Developmental Center where the family described her care as “exquisite.” That’s because the state-run developmental centers must meet strict federal standards for care that are waived for facilities in the “community-based” system.

There are other cases recounted below in which family members and sometimes guardians have been subjected to intimidation and retaliation by providers and by DDS after they raised concerns about poor care.  There are even cases in which families and guardians have been barred from entering their loved ones’ group homes or even prohibited from all contact with those family members — situations, which we have argued violated DDS regulations.

Mixed record of official concern

We have continued to raise these concerns with DDS, the DPPC, a variety of other legal enforcement agencies, the media, and advocacy organizations, and with key legislators.

Last year, after one particularly egregious case, recounted below, in which a young man nearly died in a group home after aspirating on a piece of cake, the Legislature’s Children, Families, and Persons with Disabilities Committee, did hold two informational hearings on abuse and neglect in the DDS system. But we have heard of no follow-up on those hearings by the committee.

In another case in which a provider apparently failed to take a resident of a group home for either doctor’s or dentist’s appointments for seven years, the provider acknowledged failures in its protocols and took corrective actions after COFAR brought the case to the public’s attention. In addition, DDS opened an investigation of the provider.

We have continued to ask the Children and Families Committee to approve H.93, a bill that would improve transparency in the DDS system about abuse and neglect. The bill would require DDS to post easily understandable, comparative information on its website about abuse and neglect and provider performance.

One of the cases below, involving the death of Karen McGowen, highlights the lack of transparency in abuse and neglect investigations done by the DPPC, in particular. The agency refused to release any investigative records in the case, and, as we have reported, is trying to further ensure the secrecy of its records.

In the cases summarized below, the families and guardians agreed to go public. Not included are many cases in which we have and continue to advocate on behalf of families and guardians who asked us not to reveal the details of their cases publicly.

Timothy Cheeks: Center for Human Development group home, East Longmeadow, staff neglect

(More information here)

In 2018, Mary Phaneuf, the foster mother of Timothy Cheeks, began raising concerns  about Tim’s care in a group home operated by the Center for Human Development (CHD) in East Longmeadow.

Mary’s concerns included a lack of proper medical care for Tim, 41, and no documented visits to a primary care physician or dentist for seven years. Mary also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

After COFAR contacted CHD about the matter, the provider’s CEO and president acknoweldged “failures to follow protocols,” among other problems and said the organization was taking a range of corrective actions.  In an August 2019 statement provided to COFAR, DDS Commissioner Jane Ryder said that DDS was investigating the allegations and was requiring the Springfield-based provider to implement a corrective action plan.

Despite the seriousness of the issues that Mary raised, an online June 2017 DDS licensure inspection report for CHD did not mention those or similar problems of neglect in CHD’s group homes.

Tommy Shea: Staffed apartment, staff neglect

(More information here)

Maureen Shea’s son, Tommy,  who was 33, had an intellectual disability and was subject to epileptic seizures while asleep.

Tommy’s bedroom in his staffed apartment was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.

Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries and that they had not been adequately trained in how to position the device. But provider managers had repeatedly assured Maureen that the staff were being trained and were knowledgeable about Tommy’s medical equipment.

Tommy had just returned on June 7, 2017, from a two-week stay in a hospital to his apartment. The following day, Maureen received a call from the residential supervisor to come to the residence immediately. When she arrived, the police were there. They told her that Tommy had died and that he had been found face-down on his bed. The batteries in the monitor were later found to be dead.

Maureen is pushing for S.73, a bill, which specifies that when a disabled individual is discharged from a hospital to a residential group home, a licensed medical professional from the group home must review and acknowledge the full requirements of the hospital discharge plan with respect to life support equipment. The medical professional must then advise the group home staff about those requirements.

Family separation case, isolation, family intimidation

( More information here)

In November 2015, a DDS guardian imposed a three-year ban on family contact with a developmentally disabled woman, and specifically prevented David and Ashley Barr, the woman’s father and sister, from visiting her.

The woman has been diagnosed with an intellectual disability and mental illness.

The guardian never clearly explained the reason for her family separation policy, which was nevertheless been upheld by DDS.  For the next three years, the guardian prohibited all members of the family other than an aunt from having any contact with the woman, and would not even inform the family as to where she was living. We have withheld the woman’s name because she was a victim of sexual assault.

In November 2018 email to Ashley, the guardian stated that she was finally granting permission to Ashley and David to visit the 30-year-old woman for the first time since November 2015.

In her email, the guardian wrote that she would now allow visits because the woman’s mother, Nancy Barr, had been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003. No members of the family other than the woman’s mother were involved in the abuse or were ever charged in the case.

Karen McGowen: Unexplained death, day program, provider unknown, records kept secret

(More information here)

Karen McGowen, a DDS client, was killed in an apparent accident in November 2017. She reportedly fell from a wheelchair lift while getting out of a van at her Pittsfield-based day program funded by DDS.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, confirmed it was investigating Karen McGowen’s death. The DPPC denied all requests from COFAR for the records in the case.

Holly Harrison: TILL, Inc. group home, Danvers, staff neglect and poor care, family intimidation

(More information here)

Despite a state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency upheld a directive barring a guardian of a developmentally disabled woman from entering her group home.

The August 2017 directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly Harrison.

It appeared that the only reason for TILL’s prohibition against Susan from entering the home and for a subsequent notice of eviction of Holly was that Susan had pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions on a number of occasions. Susan had also complained about conditions in the residence.

In addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan had in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

David Buckley: DDS group home, West Peabody, staff physical abuse;  provider-based group home, Hamilton, staff sexual abuse

(More information here)

On the morning of March 30, 2001, David Buckley, received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in a West Peabody-based group home run by DDS. The temperature of the water in the residence was later measured at over 160 degrees.

David died from complications from the burns 12 days later, yet no one was ever charged criminally in the case, and the DDS (then Department of Mental Retardation) report on the incident almost unbelievably did not substantiate any allegations of abuse or neglect.

Before that shower incident, David had endured a series of incidents of alleged abuse and neglect in a provider-run group home in Hamilton, including an alleged sexual assault by a caregiver. That incident had been witnessed by another staff member of the home. Yet, the witness failed to report the alleged abuse for two weeks, and, as a result, no one was ever criminally charged in that case either.  

Alexa Horn: Multiple residences, abuse neglect. Care at Wrentham Center deemed “exquisite.”

(More information here)

Alexa Horn , who has Rett Syndrome, a neurological disorder, had lived at home until she was 16. At that time, her parents, Pat and Michael, explored the possibility of getting Alexa into the Fernald Developmental Center, but they were told Fernald was closing.

Pat said she and Michael found a special needs residence for Alexa, but she developed a urinary tract infection and a subsequent sepsis infection there. The infections occurred after direct-care staff failed to tell the facility’s nursing staff that Alexa had not eaten or drunk anything for almost 24 hours.  Alexa was cared for in the intensive care unit at Boston Children’s Hospital for two weeks and was transferred to Franciscan Children’s Hospital for six weeks of rehabilitation.

When she turned 22, Alexa was placed in a DDS-funded group home near her family home in Watertown in which the care was quite good for a number of years. After five years, however, the residence started to experience a high degree of turnover of house managers, and new direct care staff were hired with little apparent training or qualifications.

Pat said the residence became dirty, clinician appointments were missed, protocols for administering Alexa’s medications and her feeding tube were not followed, and her personal hygiene degraded to the point that she had to be treated for ringworm, a type of fungal infection of the skin, on numerous occasions.

In 2014, Alexa fell out of her shower chair while a staff member was showering her because the staff member had undone her safety belt in order to wash her back. Her injuries required a trip to the emergency room and an MRI. Miraculously, Alexa did not sustain any serious injury in that incident, but she did suffer a significant amount of soft tissue damage to her face and broken blood vessels in her eye.

In another incident, the same caregiver failed to check the rate of the feeding pump when setting up her g-tube feed, and Alexa received 12 hours worth of food in a two-hour period, causing her to vomit and aspirate.

Early 2015, Pat said, she was informed by staff during a weekly Saturday visit that Alexa’s leg had been hurting her since the beginning of that week, but that the house manager had not taken her to be assessed by her doctor. The Horns called the manager on duty that weekend, who finally took Alexa to a hospital emergency room where an x-ray confirmed that Alexa had a fracture of the tibia.

The Horns then arranged to have Alexa sent to the Marquardt skilled nursing facility on the grounds of the then closed Fernald Center rather than to have her discharged back to the group home.

During her first months at the Marquardt, as she was recovering from her broken arm, Alexa contracted pneumonia and respiratory failure. After two weeks on a respirator at Mt. Auburn Hospital, she was transferred to a rehabilitation hospital where she contracted a ventilator-acquired pneumonia and a gastrointestinal infection, and suffered from serious seizures because of the medications given to combat the infection. After two and half months, she was finally well enough to be transferred back to Marquardt.

In August of 2016, the Horns learned that the Marquardt center was going to be closed, and Alexa finally became a resident of  the Wrentham Developmental Center in February of 2017. They termed the care at Wrentham “exquisite.”

Ryan Tilly: NEEDS Center, Inc., abuse and neglect, family intimidation, group home in Haverhill

(More information here)

Ryan Tilly, who has Down Syndrome, had been living in his provider-operated group home in Haverhill for only four months in March of 2016 when he was allegedly assaulted by a staff member of the residence.

The Tillys maintain that in addition to the assault, Ryan was subjected to neglect in the group home, which is operated by the NEEDS Center, a DDS provider.  He was also harassed by another resident of the group home so severely in 2016 that he continued to isolate himself in his room there and was afraid for a period of time to take showers in the residence.

Rather than working with the family to address those problems, both NEEDS and DDS initially turned against the parents, according to the Tillys and to documents in the case. The Tillys were accused of being “volatile and unpredictable,” and of fabricating a charge that the staff was failing to clean clothing that Ryan had soiled.

Ryan’s father, Brian, was banned for months from visiting Ryan in the NEEDS residence, while Deborah had to make appointments in order be able to see him.

A DDS investigation of the Tillys’ allegations regarding Ryan’s clothing determined that there wasn’t sufficient evidence to charge the group home with neglect in the matter; but the report did not refute the allegations.

In September 2016, DDS recommended that NEEDS and DDS meet regularly with the Tillys to “foster cooperation,” and that DDS explore possible new residential options for Ryan. But neither NEEDS nor DDS appear to have fostered that communication, at least initially. The restrictions against the Tillys on visiting Ryan in the group home continued through at least October of 2016, according to emails from the provider.

Yianni Baglaneas: Bass River, Inc., neglect, cover-up, group home in Peabody

(More information here)

In April 2017, the staff of a group home in Peabody failed to react for nearly a week after Yianni Baglaneas, 29, reportedly aspirated on a piece of birthday cake in the residence. Yianni was admitted to Addison Gilbert Hospital in Gloucester in critical condition, and spent 11 days on a ventilator and a week in the Intensive Care Unit at Mass. General Hospital.

According to a DPPC report on the incident, the residential director of the group home acknowledged instructing staff of  the residence not to cooperate with the DDS investigation into the matter. The director also acknowledged removing records from the facility.  The DDS investigator was subsequently unable to locate key records relating to Yianni’s care.

The DDS report stated that charges of abuse and mistreatment were substantiated in the case against seven employees of the provider, Bass River, Inc. The report found that the group home staff was negligent in failing to ensure that Yianni, who has Down Syndrome, regularly used a portable breathing mask at night called a CPAP (continuous positive airway pressure) machine. Based on the input of a medical expert, the report concluded that the failure to use the machine was the cause of the aspiration that led to Yianni’s near-fatal respiratory failure.

Andy McDonald: Family intimidation

(More information at here)

DDS has ignored requests by the parents of Andy McDonald for a new clinical evaluation of  Andy, who was deemed too dangerous in 2006 ever to be allowed to visit his family home in Sherborn.

Since Stan and his former wife voluntarily relinquished their guardianship of Andy in 1986 as part of a custody battle, Andy, who is intellectually disabled, has lived under a series of court-appointed guardians.  Like many people who lose or fail early on to secure guardianship of developmentally disabled members of their families, Stan and his current wife, Ellen, have been repeatedly stymied in their efforts to obtain that guardianship.

Stan and Ellen are rarely even informed about major events or issues regarding Andy’s guardianship; and the Middlesex County Probate Court failed for six months in 2016 to appoint an attorney to represent Andy, as required by law.

COFAR is supporting a bill (H.1415), which was first filed in 1999 on behalf of the McDonalds. The bill would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals. Despite no known public opposition, the bill has never been approved by the Judiciary Committee.

 Anthony Remillard: Templeton Developmental Center; and Brett Reich, Lifeworks, group home in Attleboro, neglect and lack of supervision by DDS and the provider

(More information here)

Brett Reich and Anthony Remillard are both men with intellectual disabilities, and both either served prison time or were faced with prison time for committing assaults. In each case, DDS appears to have failed to provide adequate supervision and treatment for them.

Unidentified man, Lowell General Hospital, neglect, lack of training

(More information here  and here)

A 2012 report by the state Department of Public Health exonerated Lowell General Hospital in the case of an intellectually disabled man who died of an apparent heart attack in 2012 after having been sent home twice by the hospital without any significant treatment.

The DPH report confirmed that the 51-year-old patient was discharged twice from the hospital in two days, and was pronounced dead after he was brought back to the hospital for the third time.

Despite the exoneration, the report appeared to leave many questions about this case unanswered — particularly whether the man, whose identity has been withheld, may have received inadequate care because hospital staff was not properly trained in dealing with developmentally disabled people.

This was one of three cases that were brought to COFAR’s attention in 2011 and 2012 in which DDS clients, each of whom happened to be a man in his 50’s, died suddenly after being transferred from developmental centers to state-run group homes operated by Northeast Residential Services, a division of DDS.

A second case was that of a former resident of the Fernald Developmental Center, who died on July 6, 2011, after having ingested a plastic bag in a Northeast Residential Services group home in which he was living in Tyngsborough.  In that case, a DPPC report concluded that there was a lack of adequate supervision of the man by his caregivers, although the investigative agency was unable to determine whether the man had ingested the plastic bag while he was in the group home or his day program or was being transported between the two.

In a third case, a former Templeton Center resident died on July 24, 2011, four days after he was transferred to a state-operated group home in Tewksbury.  The cause of death was reportedly a blood clot in his lung.

Paul Stanizzi: DDS Northeast Residential Services group home in Chelmsford, abuse; previously, Edinburg Center group home in Bedford, neglect and possible abuse

(For more information here  and here)

In February 2019, two staff members of a DDS group home were arrested for allegedly hitting and slapping Paul Stanizzi, a 50-year-old intellectually disabled man who is non-verbal.  This was the second residential facility in which Paul was allegedly injured or assaulted by staff.

In June 2014, the DPPC substantiated charges of abuse and neglect against a staff worker in a Bedford, provider-run group home in which Paul was seriously injured the previous August. Paul was at least partially paralyzed in that incident in that residence, which is operated by The Edinburg Center, Inc.  According to a DPPC report on the incident, Paul was found lying on his back in his room by the staff worker on the morning of August 27.

The staff worker, who had been on the overnight shift, told investigators he had heard noises in Paul’s room during the night, but never investigated them and then fell asleep for several hours during his shift.

Paul, who is non-verbal, was taken to Lahey Clinic in Burlington, which determined he had a spinal injury.  No group home staff accompanied Paul to the hospital, according to the report.

Sara Duzan: Becket Family of Services, Inc. group home in Westminster, abuse, neglect, family intimidation

(More information here)

In 2013, a DDS guardian issued an order forbidding the family of Sara Duzan, a woman with an intellectual disability from all communication with her.

Members of the Duzan family said they were concerned that Sara was been subjected to abusive physical restraints and seclusion at the Becket residence, but that they had had no way of knowing what Sara’s care and living conditions really were.

Sara, then 21, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from both an admission by Sara’s mother, Maryann, that she once lightly slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that while the family had never abused Sara, they had been uncooperative with providers in caring for her.

John Burns: Center for Human Development, Alleged Abuse

(More information here)

In August 2012, a jury acquitted a staff member of a group home operated by the Center for Human Development (CHD) in Springfield of allegedly assaulting John Burns, a man with an intellectual disability, during an outing on Cape Cod for clients of the home.

Sheila Paquette, of Westfield, Burns’ sister and guardian, ultimately filed the assault charge against the staff member herself in July 2010 when she became convinced no law enforcement agencies were going to do so.

It was only after Paquette filed the charge that the DPPC sent a state trooper to her house to investigate, she said. Despite that, the case languished for months at a time, beset by bureaucratic snafus and witness no-shows that caused the trial to be postponed four times.

When the trial finally took place, the District Attorney’s prosecution effort seemed half-hearted. Among other questions COFAR had about the case was why no one from the DPPC or its state police unit was called to testify at the trial.

The DPPC had issued a comprehensive report on the incident in February 2011, which did find sufficient evidence to conclude that Burns was “seriously injured” by the caregiver.

Tholda Chhom: Northeast Residential Services, Chelmsford, lack of supervision

(More information here)

In June 2011, a resident of a state-run group home in Chelmsford walked out of his residence, went next door and attacked a pregnant woman as she was sitting in her living room with her husband and three-year-old daughter.  The man managed to tear off Amy Hillman’s shirt and jump on top of her before he  was pulled away by Hillman’s husband, James.

The group home resident, Tholda Chhom, and James Hillman ended up in the front yard, where Chhom continued to charge at Hillman before running back to his residence just before police arrived, according to witnesses.  Chhom was later charged with assault and attempted rape, and was then placed in a “more secure state facility,”  according to The Lowell Sun.

COFAR is concerned that this case shows that even state-run community residences lack an intensive care model that meets the federal standards set for Intermediate Care Facilities.  ICF-level care, which exists only in two remaining developmental centers in Massachusetts – the Wrentham and Hogan Centers — stipulates that residents receive onsite clinical, medical, and nursing care and full-time supervision.  Not everyone with intellectual disabilities needs this level of care.  Only a small fraction of them do.  But Chhom would appear to be one of them.

Should we require video cameras in DDS group homes?

October 23, 2019 6 comments

A bill filed in the state Legislature would require residential programs across the state for persons with developmental disabilities or mental illness to install video surveillance cameras in common areas in their facilities in order to deter and potentially prosecute abuse.

We support the bill (H.158) in concept although we’re not sure how effective the measure, as currently drafted, would be because it would not require security cameras in bedrooms. The bill is in the Children, Families, and Persons with Disabilities Committee. We’ve posed a number of questions to the committee about it.

H.158 states that video cameras must be installed at all entrances, exits, and common areas of facilities licensed by the Departments of Developmental Services and Mental Health, including community-based group homes and inpatient facilities. The bill, however, would not require the installation of cameras in bedrooms, where it could be argued that most abuse occurs.

If properly drafted, this bill could serve as an additional safeguard to abuse and neglect, and supplement a separate bill (S. 2367), which would establish a registry in the state of caregivers found to have abused persons in DDS-funded facilities. S.2367, known as Nicky’s Law, was approved unanimously by the Massachusetts Senate last week.

Massachusetts currently appears to have no laws that specifically restrict videotaping in group homes, but there are statutes and regulations that restrict audio-taping without consent. A guardian can apparently install a video and audio camera in the bedroom of a developmentally disabled individual with the permission of the facility provider.

On October 15, I emailed a number of questions relating to H.158 to the Legislature’s Children and Families Committee. Among my questions were:

1. Do you know whether similar legislation has been enacted elsewhere or what its effectiveness has been?

3. Do you have any information or estimates on the cost of installing and maintaining cameras and monitoring units in all DDS and DMH residential facilities?

4. Do you have any information on the number of abuse incidents that occur in common areas or in entrances or exits of group homes?

To date, I have not yet heard back from the Committee.

Literature on video surveillance in group homes and other long-term care settings

There is some academic literature that is critical of the idea of video surveillance in long-term care facilities. But there are experts who vouch for the effectiveness of video surveillance, at least in helping prosecute caregivers for abuse. There seems to be some agreement that the cameras are not necessarily as effective in deterring abuse as in helping prosecutions after abuse has occurred.

Judge Rotenberg Center case

An article by The New England Center for Investigative Reporting (NECIR) implied that cameras were effective in bringing criminal charges in at least one case at the Judge Rotenberg Center in Canton, MA. The October 29, 2018, article stated that a 22-year-old man was repeatedly whipped by a belt-wielding caretaker in a Rotenberg Center group home. The caretaker was criminally charged after his actions were caught on video.

Apparently, the Rotenberg Center and its 45 group homes are equipped with surveillance cameras. At the same time, however, it appears the cameras have apparently not stopped the relatively high number of abuse cases that the Rotenberg Center is cited for each year.

The 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 NECIR found that the Rotenberg Center was cited for abuse of adult residents more than any other special needs school by the Disabled Persons Protection Commission between 2011 and 2016. Our own analysis of DPPC data showed that the Rotenberg Center led other providers in two separate regions in the state in total complaints or highest percentage of abuse complaints referred for criminal investigation between Fiscal 2010 and 2019.

Rape case spurs camera legislation in Arizona

Palm Beach Post article in February discussed the debate over surveillance cameras in noting that a rape in an an Arizona Intermediate Care Facility was spurring legislation in that state to allow cameras in long-term care facilities.

The article stated that Arizona was considering whether to join 10 other states — Illinois, Kansas, Louisiana, Maryland, New Mexico, Oklahoma, Texas, Utah, Virginia and Washington — with laws or regulations allowing surveillance equipment inside nursing homes, assisted living centers and other group residential settings.

The Palm Beach Post article noted that most of those laws place the option and cost of electronic monitoring on residents and their guardians. According to the article, a majority of the laws allow residents or their surrogates to put cameras or monitoring devices in their rooms but require them to notify the facility, among other conditions.

Carole Herman, founder of the advocacy group Foundation Aiding the Elderly, was quoted in the article as saying, “The (healthcare) industry doesn’t want it obviously. But if they care about these people, what’s the resistance to these cameras?”

The article also quoted one expert who said a properly designed closed-circuit TV system with “multiple monitoring points” could be a good deterrent.  However, in many cases, nobody is watching the video monitors, the expert said.

We think it might make sense to add a requirement to H.158 that DDS-funded facilities install surveillance cameras in bedrooms or other areas where abuse is known to take place, provided that the DDS clients involved or their guardians or family members agree to those placements. As noted, it does not appear to us that current law would prevent those installations.

Ultimately, we think the solution to the abuse problem lies in changing the culture in provider organizations, which is currently lax regarding training and supervision of group home staff. Without first taking that step, relying on surveillance technology and the registry may lead to a false sense of security.

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

October 8, 2019 25 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.