Colleen Lutkevich retires after 35 years with COFAR

June 7, 2021 11 comments

Colleen M. Lutkevich, who advocated for 35 years on behalf of COFAR and served as its unpaid executive director for more than two decades, officially retired this month from the organization.

When she was 25 years old and pregnant with her first child in 1985, she first went to work part-time as a secretary for COFAR, which had only been established a couple of years earlier.

“People organized COFAR for the sad reason of having a loved one with an intellectual disability,” Colleen said in a farewell message to the Board this past week. “But they channeled their sadness into advocacy and made a real difference in people’s lives, and in the DDS system.

“I feel good about this decision (to retire) and I know that no one is irreplaceable!” Colleen’s message continued. “I remain willing to offer help and advice as needed and I wish all of you the very best in continuing  your work with COFAR.” She is continuing to serve as president of the Wrentham Family Association, an affiliated organization to COFAR.

She also is continuing to work as a high school guidance counselor in the Easton public school system, and raised three children with her husband, Paul.

colleen-family-photo

Colleen Lutkevich (2nd from right) with members of her family at a Wrentham Developmental Center holiday party in 2012. With her are (from left) her father, John Sullivan; mother, Gladys Sullivan; and sisters, Laura Bradley, Jean Sullivan, and Joyce Wise.

Colleen followed in the footsteps of her father, John Sullivan, and her mother, Gladys, in advocating for better care for her sister, Jean, who has an intellectual disability. Jean has lived at the Wrentham Developmental Center for more than 60 years. 

John Sullivan, who was one of the founders of COFAR, was among the plaintiffs in Ricci v. Okin, the landmark federal lawsuit in the 1970s that led to major upgrades in care in the state facilities. John died in 2017 and Gladys died in 2016.

Johanna Smith, COFAR vice president, responded to Colleen, saying, “I am in awe of your wealth of knowledge and experience in this area, and your kind and patient wisdom in helping people deal with so many difficult and emotional situations.  You say that no one is irreplaceable, but you have been a wonderful and unique resource to so many people and I’m sure they would agree that your help was irreplaceable in their lives.” 

Anne Paulsen, a Board member and former member of the state Legislature from Belmont, wrote, “In the short time I have been associated with COFAR, I have learned that you are the linchpin of the organization.”

Joe Corrigan, a Board member, said, “COFAR is losing a lioness.” He said his sister Pat and late brother Jack “benefitted from Colleen’s devotion.” 

Wrote Board member Deb Cooksey, “You have dedicated countless years of your life to this cause, and I’m so grateful for your leadership. So many families with loved ones with ID are better off because of you.” 

Advocacy efforts began in the Ricci era

In recounting her start in working on behalf of the developmentally disabled, Colleen listed names of people, in addition to her parents, who were instrumental in the early days of COFAR and the Ricci case. She mentioned Phil Corrigan (Joe Corrigan’s father), Louise Johnson, Charlie Hart, Mary McTernan, George Mavridis, Richard Krant, Ed Orzechowski, Frank Every, and Ed Stefaniak, among others. 

It was those people, she said, who taught her how to navigate what is now the DDS system, and how to make the case for better care for its clients.

She said her father, in particular, served as an inspiration to her in her advocacy. “My dad worked and fought his whole life to make the system work for the least fortunate among us,” she said. “His advice was always, ‘never be afraid.’”

In the early 1980s, she said, everyone belonged to the Arc of Massachusetts, which her father had also helped to found.

But at the height of the Ricci litigation, a split developed in the Arc organization between those who wanted to close all congregate care facilities such as the former Fernald Center, and those, like Sullivan, Corrigan, and others, who believed the facilities should remain as an option for those needing the intensive care and services they provided.

In 1983, the pro-facility contingent broke away from the Arc and formed COFAR. Colleen later took the secretary job, but the organization was experiencing financial problems and was unable to pay even her nominal salary of about $7,500 a year.  So she continued to work without pay in the same position until 1995.

Although she ostensibly quit COFAR in 1995, Colleen came back to fill the then vacant executive director position in 1998. Once again, she accepted the position without pay, and continued to work as a volunteer executive director ever since.

Worked to stop involuntary placements

Colleen recalled that among the highlights of her work for COFAR were successful advocacy drives to prevent involuntary placements of persons with intellectual disabilities (ID) in mental health facilities and nursing homes in the late 1980s and early 1990s.

In the first case, she said, COFAR worked with legislators to pass a guardianship transfer statute, which stopped transfers of individuals with ID to mental health facilities against their families‘ will. The law required that an individual’s primary diagnosis be an intellectual disability if the individual was “dual-diagnosed” with both ID and a mental illness.

In the second case, Colleen worked with the then Governor’s Commission on Mental Retardation to prevent inappropriate placements of persons with ID in nursing homes. “We found that residents from facilities were being sent to nursing homes as community placements,” Colleen said. With the help of the Governor’s Commission, COFAR and other advocates “blew it wide open,” she said.

A subsequent lawsuit, which became known as Rolland v. Patrick, led to the cessation of the placements in nursing homes, and earned a number of residents the right to return to the Wrentham Developmental Center. Colleen said she was especially gratified when she found that one person, who had been moved back to Wrentham, started talking again, and was able to visit with his three brothers, all with intellectual disabilities and living in different DDS placements.

Process became more adversarial

In the past 10 to 15 years, Colleen said, she found that COFAR’s relationship with DDS and successive administrations changed. That change, from a relatively cooperative relationship to a more adversarial one, came as those administrations began closing Fernald and other remaining Intermediate Care Facilities (ICFs).

While six ICFs still remained in the state as of 2008, only two remain today – the Wrentham Developmental Center and the Hogan Regional Center.

More and more, Colleen said, she found herself fielding calls from family members living in the community-based group home system looking for help in dealing with problems of neglect and abuse. “We became more of a watchdog organization,” she said.

While DDS commissioners and other administration officials would, in the past, often attend COFAR meetings and gatherings, “we now get the runaround and few replies,” she said.

Through it all,  Colleen said, her personal mission remained unchanged.  “My view is that’s why we’re here. Let me help that family.”

Yet another corporate DDS provider is slapped by a state audit

June 3, 2021 3 comments

The Berkshire County Arc is one of the the latest in a series of corporate residential providers to the Department of Developmental Services (DDS) that have found themselves targets over the past two decades of the state auditor for misuse of state funds.

A few other examples include audits of Brockton Area Multi Services just this week; Human Service Options and Nonotuck Resource Associates in 2016; the May Institute in 2013; Crystal Springs in 2012; and Toward Independent Living and Learning in 2002.

From personal use by corporate executives of the Berkshire Arc’s credit cards to personal use of its frequent flyer airline miles, the problems cited in the Berkshire Arc audit sound almost monotonously familiar.

The Berkshire Arc and its lobbying affiliate, the Arc of Massachusetts, have hit back, arguing that many of the audit findings were technical in nature.

To be sure, the Berkshire Arc audit does have at least one finding that seems to imply a largely technical violation involving the financing of capital improvements and maintenance of residential and other properties. The Berkshire Arc shouldn’t have charged the state for that, the audit said, because the properties are technically owned by another nonprofit affiliated with the Berkshire Arc.

That violation seems technical because it seems that the Berkshire Arc’s clients did potentially benefit from the capital improvements.

But other findings about misuse of credit cards and airline miles were clearly about people in high-level management positions allegedly benefiting themselves personally. One would think that after decades of these kinds of audit findings, the heads of these organizations would finally put an end to these practices.

“Our audit makes clear that those in leadership fell short of meeting their oversight and fiduciary responsibilities,” State Auditor Suzanne Bump said in a press release.

But it seems these kinds of problems will likely continue to occur in a system that has seen care for persons with developmental disabilities largely handed over to corporate contractors to DDS. It’s a system in which DDS itself and other regulatory agencies appear to constantly fall short of their own oversight responsibilities.

The Berkshire Arc received over $25 million in funding in Fiscal Year 2019 from state agencies including DDS, the Massachusetts Rehabilitation Commission, and the Commission for the Blind, according to the audit.

Among other problems cited by the audit, the Berkshire Arc allegedly used its credit cards to pay $124,247 in expenses that were non-reimbursable under its state contracts because they were inadequately documented, were not related to the organization’s social service program activities, or were luxury items otherwise prohibited by state regulations. Those items included valet parking, priority boarding, main-cabin extra seating on airlines, and alcohol.

The Berkshire Arc responded that the extra main-cabin seating was purchased so an individual with disabilities could attend a national self advocacy conference in 2018. But the audit stated that the supporting documentation that the Berkshire Arc provided indicated that the extra cabin seating was purchased by and for the organization’s chief operating officer, with no indication that it would be used by one of the clients.

The audit found that Kenneth Singer, the Berkshire Arc’s president and CEO, used credit card reward travel miles earned by the organization for his personal use in violation of state regulations and the organization’s own policy. The audit alleged that “at a minimum,” Singer redeemed miles earned by the Berkshire Arc on agency credit cards to pay for trips made for personal reasons to Hawaii and Mexico.

As a result of this issue, the audit stated, the Berkshire Arc “lost the opportunity to reduce its travel costs…(and) the money saved could have been used to provide additional services to its clients.”

The auditors also determined that Singer’s wife, Christine, who was working as a consultant to the Berkshire Arc, used the organization’s credit cards for $2,057 in trips, meals and gifts for a Berkshire Arc conference. Further, the audit noted, the Berkshire Arc charged its client funds accounts $43,192 in credit card purchases for which it did not have the required documentation.

In what seems to be the technical violation, the auditor said the Berkshire Arc paid for $487,341 in capital improvements to properties owned by a related party. The audit claimed those expenses were for assets that were not owned by Berkshire Arc and were therefore not program-related.

The Berkshire County Arc’s response was that its properties are “100% occupied and utilized by Berkshire County Arc for residential services, day services, programming, and operations.” It doesn’t appear that the audit questioned or contradicted that assertion.

The audit recommended, among other things, that the Berkshire Arc establish monitoring controls on all credit card expenses before payment, and that the organization “properly identify and correctly report all non-reimbursable expenses.”

We’re glad the state auditor is periodically reviewing the books of DDS providers, and making recommendations for correcting the deficiencies in financial management. The Berkshire Arc, in particular, also pledged to revamp some of its bookkeeping and management practices.

But what is needed is a more comprehensive review of the DDS system as a whole to address the patterns of faulty management that seem endemic to the system given that they keep coming up again and again in the audits. It is somewhat disappointing that these audits are done piecemeal. We have long called for a comprehensive investigation of the DDS system in Massachusetts.

If nothing else, the continuing series of piecemeal findings by the state auditor of mismanagement among providers shows just how much such an investigation is needed.

Proposed commission on former DDS state schools needs to acknowledge upgrades in care

May 26, 2021 3 comments

The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.

That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.

At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.

In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.

The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.

For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.

Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.

COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.

We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.

As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community 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.”

Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.

The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.

The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.

We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.

In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”

Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”

We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.

Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”

Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”

Commission’s written charge needs to be expanded to recognize ICFs today

In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”

The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.

“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said. 

It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.

Families still restricted in visiting loved ones in DDS system even if residents have been vaccinated

May 19, 2021 2 comments

Throughout the COVID-19 pandemic, we have questioned overly restrictive and sometimes contradictory family visitation policies imposed by both the Department of Developmental Services (DDS) and its residential providers.

What seems surprising is that now, with most residents in the system apparently having been vaccinated, those restrictive and contradictory policies appear to be continuing.

In response to a query sent to our members last week, several said they were continuing to be sharply restricted or even prohibited entirely from entering group homes in which their loved ones are living. Some of those family members are nevertheless allowed to take the residents home for visits.

As we have reported, while most residents of group homes and developmental centers in the DDS system appear to have been vaccinated, a significant percentage of staff have not been. Yet, the restrictions on visitation or contact appear to be aimed exclusively at family members and guardians of residents.

“To hold families and guardians to a higher standard than direct care is unfair and makes no sense,” said Thomas J. Frain, COFAR Board president. “Family visits at this time should not be any more restrictive than they were before the crisis. But some residential managers are clearly using COVID restrictions as a weapon to control family access to their loved ones.”

In an email sent Monday (May 17) to DDS Commissioner Jane Ryder, I asked why visitation restrictions were still ongoing in residences in which all residents have been vaccinated. Ryder, to date, has not responded.

DDS visitation guidance, dated March 19 of this year, continues to give providers discretion to limit the number of visitors and restrict visits under any circumstances the providers deem pose a threat to safety. The guidance document states that any such restrictions should not be arbitrary.

While the March guidance does allow visitors who are fully vaccinated to meet with vaccinated residents in their rooms, it states that providers must restrict all visitation if any staff are infected or presumed infected within the past 14 days. It apparently doesn’t matter under the policy whether all residents have been vaccinated or not.

Family members and guardians cite arbitrary restrictions

A number of other COFAR members said this past week that they have been subjected to differing and sometimes seemingly arbitrary restrictions on visitation.

Colleen Lutkevich, COFAR executive director, said all residents in her sister’s house on the Wrentham Developmental Center campus have been quarantined from May 11 through May 21 because two staff tested positive for COVID. Yet, all residents have been vaccinated, she said, and none are currently testing positive.

Frain said he, himself, was subjected to what appeared to be an arbitrary restriction by staff after his brother experienced a medical emergency in his group home in March. Frain had entered the residence along with ambulance personnel to attend to his brother.

When the emergency was over, Frain said, he was singled out by two staff members and told he alone must leave by the back door of the residence because he hadn’t been tested on entering for COVID. Frain said he complied with the order, but feels it was unnecessary and was possibly an effort to personally humiliate him as a family member.

One COFAR member said that even though her son has been vaccinated — and she believes all other residents of his group home have been vaccinated as well — she and her husband have not been allowed to enter the residence. Nevertheless, she said, they are allowed to take their son home for overnight visits.

“It makes no sense,” the COFAR member wrote in an email. “At least we can be with him, so I really can’t complain, but it would be nice to see what is going on in the house.”

As is the case with a number of families, the COFAR member said she needs to go through her son’s clothes for the seasonal change to spring.  Because of the no-entry restriction, the staff brought his belongings to the backyard. “I cannot bend over,” she wrote, “so it was difficult.”

Yet we were told that in another group home even unvaccinated family members were allowed inside to their loved-one’s bedroom to change his wardrobe to spring.

Another COFAR member, who wanted to change her son’s clothing from winter to spring, said she is currently allowed to enter the residence once a week.  She too can take her son home at any time.

Another provider requires a week’s notice prior to visits by family members. In yet another case, visitors are allowed in the house, but only for a maximum of 30 minutes.

COVID infection rates not correlated with restrictions on family visits 

State data show the rate of COVID infection in the DDS system among both residents and staff declined earlier this year, reaching lows at the end of March. But since then, as recent weekly online state facility reports show, the decline has stalled, and rates of infection have held steady.

As of May 11, 10 residents and 14 staff in the state-operated group home system continued to test positive for COVID. As of that date, 37 residents in provider-run group homes and an unreported number of staff continued to test positive.

There were as many as 5 deaths among residents in the group home system due to COVID in the seven days prior to May 11.  No data on COVID-related deaths are available for staff.

While administration officials have not responded to our requests for comment on the matter, we think the decline in the COVID rate in the DDS system from January through March was largely due to the vaccinations of most of the residents and at least some staff, which began in January.

Although data is lacking, we think the continuing presence of at least some COVID in the system since the end of March may be due to the apparent continuing resistance of a significant number of staff to getting the vaccine.

As far as we can tell, residential DDS providers have continued to impose the same types of restrictions on family visits that they imposed prior to the first vaccinations in January. So, we don’t see that those restrictions as related to the decline in COVID rates since January or to the continuing presence of infection in the system.

It’s time, as Tom Frain said, for DDS to issue new, unambiguous guidance to providers to restore visitation policies to what they were prior to the pandemic.

Stan McDonald, who fought for guardianship and visits from his son, dies

Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.

We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).

Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn. 

Stan, Andy, and Ellen in 2012

In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.

In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.

In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen.  Their claim appears to be backed up by the district court record and a subsequent police report.

The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen said the punch was accidental.

Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans.  He was described in one care plan as “kind and friendly to others,” and as “a polite man.”

While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”

We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.

Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.

Successful advocacy for Andy

While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.

Supporters urge restoration of Stan McDonald’s guardianship of Andy

In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. 

Guardianship bill

H.1733, which Stan advocated for continuously, 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.

The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.

If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.

In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).

DDS reports drop in integrated employment of clients in the state from 2019

May 11, 2021 4 comments
A new Department of Developmental Services (DDS) “Progress Report” shows a drop in total “integrated employment” of DDS clients in Massachusetts from a high in October 2019.
 
The Fiscal ’21 Progress Report data show total integrated employment hitting a peak of 7,180 DDS clients in October 2019, and then declining to 7,090 as of October 2020. As of March of this year, only 6 additional clients had been placed in integrated employment from October 2020, five months previously.
 
The new data confirm a report in our blog post in March that there has been an employment drop. At the time, there was no comment from DDS about the matter.
 
Integrated Employment is defined by the U.S. Department of Labor as jobs held by people with disabilities in “typical workplace settings” where the majority of persons employed are not persons with disabilities.
 
In these jobs, the individuals with disabilities earn wages consistent with wages paid workers without disabilities performing the same or similar work. The individuals earn at least minimum wage, and they are paid directly by the employer. 
 
We have long maintained that the administration closed all remaining sheltered workshops in the state as of 2016 without any assurance that all or most of the participants would be able to find jobs in the mainstream workforce.
 
The new DDS Fiscal ’21 Progress Report largely blames the integrated employment slowdown on the COVID pandemic, even though numbers provided in March to us by DDS indicate the slowdown began before the pandemic began.
 
Based on the earlier figures provided by DDS to us, we calculated that the number of clients in integrated employment actually dropped by 53% between October 2019 and February of 2020, which was prior to the start of the pandemic.
 
The FY’21 Progress Report does not confirm a drop of that magnitude. But the report actually does not list any data for Calendar Year 2020 prior to October. Thus, there are no data in the Progress Report for February 2020, which was when the large drop in employment appeared to have occurred.
 
The Progress Report also shows that the number of clients being placed in day programs after the closure of the state’s remaining sheltered workshops has far outpaced the number entering integrated employment.
 

The Progress Report describes the past year as “incredibly challenging for day and employment providers and the individuals and families they serve.” The report notes that in March 2020, on-site day programs were shut down as a result of the pandemic, and were reopened in July under strict social distancing rules.

The DDS day program line item in the state budget is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.

The Progress Report states that mainstream workplaces also shut down or operated at reduced capacities during Fiscal ’20 and ’21, and stated that those shutdowns and reductions limited the number of individual and group-supported employment opportunities available.

Nevertheless, the Progress Report data indicate that after the day programs were reopened in July 2020, the numbers of clients entering integrated employment showed virtually no increase.

The report does not make specific projections regarding integrated employment in the coming fiscal year, but says that “it is expected that a similar number of adults will transition to these services in FY2022.”

Numbers entering day programs outpaced integrated employment

As noted, the Progress Report indicates that the numbers of clients being placed in day programs after the closure of the sheltered workshops has exceeded the numbers entering integrated employment.

While the numbers of clients placed in integrated employment rose by 20% from 2015 to October 2019, the number of clients in DDS day programs increased by 43% over that same period—a percentage more than twice as high—and those numbers continued to increase though March of this year. (See graph below)

Difficulty in finding jobs acknowledged

The Fiscal ’21 Progress Report acknowledges the state has experienced “difficulty obtaining job opportunities for individuals with significant disabilities who require customized work.” The report further notes:

  • Transportation challenges for people seeking or working at integrated jobs in the community, especially in geographic areas where there are limited public transportation and/or para-transit options.
  • Individual concerns with the impact on Social Security and other public benefits when individuals earn more income.

In addition, the report states that many day program providers are experiencing “workforce challenges … which result in higher vacancies and turn-over that have an impact on access to and continuity of services.”

Despite those problems, the governor and Legislature have so far proposed cuts in the Fiscal 2022 state budget for both DDS day program and transportation funding. We are continuing to advocate for a restoration of funding to the day and transportation accounts.

Equally importantly, we believe work activities are needed in the day programs to make up for the lost opportunities resulting from the closures of the sheltered workshops.

State House approves cuts to DDS day program funding, increases for provider group homes

May 5, 2021 4 comments
In approving a state budget plan for Fiscal Year 2022, the Massachusetts House late last week largely followed Governor Baker’s lead with regard to the Department of Developmental Services (DDS).
 
Both the House and governor’s budget proposals involve cutting funding for DDS community-based day programming, state-run group homes, and the two remaining developmental centers. Meanwhile, funding would be boosted, as has been the case for the past decade, for corporate provider-run group homes.
 
The budget deliberations will now be taken up by the Senate.
 
Community-Based Day Program cuts
 
The House did make a few tweaks to the governor’s proposals for DDS. In its budget plan, the House added $15 million to the governor’s proposed funding for the Community-Based Day and Work (CBDW) program line item (5920-2025). However, even the House funding would involve a significant cut of $19 million, or 8%, to the line item from the current year.
 
In his budget proposal in January, Baker specified a $34.6 million, or 14%, cut in the CBDW line item.
 
The House budget states that the $15 million added back to the CBDW line item would primarily be for the development of services in response to the COVID-19 pandemic. Those services were listed as including remote and virtual day program supports, and “in-home or in-community services.”   
 
We have previously reported that the COVID crisis resulted in a major shift to remote attendance in the CBDW programs via platforms such as Zoom. As of November 2020, 36% of day program clients were attending remotely only, according to the March 9 DDS data. 
 
The proposed cuts in the CBDW line item would appear to signal further bad news for integrated employment prospects for DDS clients because the CBDW line item is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.
 
We also previously reported that DDS data revealed a 53% drop-off in “group and individual supported employment” among clients between October 2019 and February 2020.
 
Along with the cut to the CBDW program account, the House plan would cut the DDS transportation line item by $6.2 million, or 18.6%. That would not be as deep a cut as the governor’s January proposal to cut the transportation line item by nearly 40%.
 
Corporate-provider group home funding would be increased while state-operated group home funding would be cut
 
The House adopted the governor’s proposed funding increase for corporate provider-run group homes of $120.7 million, or 9.4% (line item 5920-2000). But as we previously reported, that may be an understatement of the increase sought by Baker. The nonpartisan Massachusetts Budget and Policy Center has pegged that proposed increase at $157 million, or 12.2%. 
 
If the Senate concurs with the proposed increase, the corporate provider line item would be funded at more than $1.4 billion, which would represent a 91% increase over the funding appropriated for the same line item a decade previously, in Fiscal 2012.
 
Funding for state-funded group homes and developmental centers, in contrast, have been on a relatively flat or downward trajectory respectively, and Fiscal 2022 would be no different. (See graph below.)
Source: Mass. Budget and Policy Center

The House budget would add $100,000 to the governor’s proposed Fiscal 2022 funding for state-operated group homes (line item 5920-2010). However, when adjusted for inflation, even the House budget proposal would amount to a cut in funding for this line item of somewhat less than 1%. (We are basing that assessment on numbers from the Massachusetts Budget and Policy Center’s “Budget Browser.”)

The two remaining developmental centers would similarly see their funding cut in Fiscal Year 2022 by $2.1 million under the House budget, when adjusted for inflation (line item 5930-1000). Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.

COFAR is continuing to raise concerns regarding the ongoing under-funding of state-run DDS programs. We believe this has led to unchecked privatization of programs and services.

We are also concerned that even within provider accounts, we may be seeing a permanent pullback in funding for day programming, with much of that funding ultimately going to provider-run group homes.

Last month, we sent an issue paper raising those concerns, among others, to Senator Adam Gomez and Representative Michael Finn, the new chairs of the Legislature’s Children, Families, and Persons with Disabilities committee. You can find our issue paper here.

Staff resistance to COVID vaccine may be keeping virus in DDS system

April 27, 2021 1 comment

Resistance among group home staff in the Department of Developmental Services (DDS) system to getting vaccinated against COVID-19 seems to be an ongoing problem, and we’re concerned that it may be linked to the continuing presence of COVID in the system.

The latest online weekly COVID testing data for the DDS system show that while the number of infected staff and residents in the system has declined from historic highs in December and January, the rate of that decline may have stalled in the past several weeks. 

The vaccination effort in the DDS system started in December.

It is concerning that as of April 9 — some four months after the vaccination program began — less than 50% of staff in state-operated group homes were fully vaccinated, according to data provided last week by the Executive Office of Health and Human Services (EOHHS).  In provider-run group homes, only 51% of staff were fully vaccinated as of April 12. 

The data are as of April 12 for provider-operated group homes, and as of April 9 for state-operated group homes and the state’s two developmental centers or Intermediate Care Facilities (ICFs). The data were provided to COFAR in response to a Public Records Request. EOHHS and DDS provided data for February and March in response to a previous records request.

In the ICFs, the current level of staff vaccinations appears to be higher than in the group homes, but the numbers are still somewhat concerning. Some 68% of the staff at the Wrentham Developmental Center (WDC) and 66% at the Hogan Regional Center in Danvers were fully vaccinated as of April 9.

That this apparently low level of staff vaccinations is not simply due to a slow vaccination process appears to be borne out from the data. First of all, among residents of both state and provider-run facilities, the vaccination picture looks much brighter.

Among residents in state-run group homes, some 90% were fully vaccinated as of April 9. At WDC, 99% of residents were fully vaccinated, and 91% of residents at Hogan were fully vaccinated as of April 9.

In provider-run residences, 75% of residents were fully vaccinated, although18% had not gotten their first shot as of April 12.

The graphs below illustrate the differences in numbers of persons getting vaccinated among the different settings, and differences in vaccination levels between staff and residents. 

The graphs show that relatively large numbers of staff were still unvaccinated (the orange bars) in the provider and state-operated group homes, while the numbers of unvaccinated residents in all of the settings (the yellow bars) were much lower.

Data appear to show resistance by staff to vaccinations

Vaccination data regarding state-run and provider-run group homes appears to imply that there is a relatively large group of staff that are resisting getting the vaccine. 

For instance, of the 1,596 staff in DDS state-run group homes who did get a first dose of the vaccine as of Feb. 16, most appear to have gone on to get their second shot as of April 9. A total of 1,728 staff in the state-run group homes were fully vaccinated as of April 9, up from 277, as of February 16.

However, 1,966 staff had still not gotten their first shot as of February 16. And the data indicate that only 279 of those staff had gotten their first dose as of April 9. That left 1,687 staff still unvaccinated in the state-run group homes as of that April date.

As a result, the number of unvaccinated staff in the state-run group home system dropped by only 7.8% between February 16 and April 9, declining from 55.2% to 47.4%. 

Decline in COVID-19 in the DDS system may have stalled

As some staff have apparently continued to resist getting vaccinated, the rate of decline of COVID in the DDS system appears to have stalled.

For DDS state-operated group homes, a low in the infection rate was reached as of March 30, when 9 residents and 12 staff tested positive. That is compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December. 

But as of April 20, the latest date for online data, the number of COVID positive residents in the state-operated group homes was still at 9, and the number of positive staff had crept up to 14.

In the provider-operated group homes, a low of 29 positive residents was reached as of March 23. That number was up to 31 residents as of April 20. No information is made available by the administration, for unknown reasons, on the number of staff testing positive in provider-operated homes.

At the Hogan Center, no staff or residents have tested positive since February; but at WDC, as many as 5 staff tested positive as of April 13 and April 20. No exact number is given for 5 or fewer persons testing positive in a given setting. Zero residents at WDC have tested positive since January.

So it may be the case that as long as at least some staff are continuing to resist getting vaccinated, the number of staff and possibly even of residents in the DDS system who get COVID may never reach zero.

There have been no deaths in either ICF from COVID since last November. But there have continued to be as many as five deaths per week in the group homes as recently as of April 13. That lower number of deaths in the ICFs may also reflect the fact that the vaccination rate among staff and residents in the ICFs has been higher than in the group homes.

We can only speculate as to whether the administration considers it a problem that the vaccination rate among staff in the DDS system is still as low as it is. Neither Health and Human Services Secretary Mary Lou Sudders nor DDS Commissioner Jane Ryder has responded to our multiple requests for comment about the vaccination process in the DDS system.

Until and unless the Baker administration decides that the public has a right to know their thinking on this, we will have to keep guessing.

Congress still trying to eliminate congregate care for developmentally disabled

April 19, 2021 10 comments

In their latest attempt to do away with congregate care for persons with intellectual and developmental disabilities and promote further privatization of services, lawmakers in Washington have proposed the Home and Community Based Services Access Act (HCBS Access Act).

While we support the intent of this legislation to eliminate waiting lists for disability services, the bill’s provisions are heavily biased against congregate care facilities such as the Wrentham Developmental Center and the Hogan Regional Center in Massachusetts. The bill is also biased against sheltered workshops and other programs for people who are unable to handle mainstream or community-based settings.

In that regard, this legislation is similar to the federal Disability Integration Act of 2019, which ultimately did not pass in the previous congressional session.

While we think it was good news that the Disability Integration Act didn’t pass, the bad news is that many in Congress, including most, if not all, of the Massachusetts delegation, appear to subscribe to the notion that community-based or privatized care is the only appropriate option for people with cognitive disabilities. 

Every member of the Massachusetts delegation signed on to the Disability Integration Act, which would have encouraged further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country. The HCBS Access Act would do so as well.

Comments are due April 26 on the HCBS Access Act, which has been proposed by Representative Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH). Comments can be sent to HCBSComments@aging.senate.gov.

We will also be urging the members of the Massachusetts delegation to take another look at the issue of congregate care, and reassess their positions.

The HCBS Access Act actually appears to go a step beyond the Disability Integration Act in that it would potentially eliminate funding for Intermediate care facilities (ICFs), including the Wrentham and Hogan Centers.  Currently, the federal government pays 50% of the cost of care in both ICFs and community-based group homes. The state pays the other 50% of the cost.

The HCBS Access Act would change that federal-state funding formula to require the federal government to pay 100% of community-based group home costs. The federal share of the cost of ICFs would remain at 50%. That would place enormous pressure on states to eliminate ICFs since they would continue to receive only 50% federal funding.

As the National Council on Severe Autism (NCSA), a nonprofit organization, noted in comments on the HCBS Access Act, ICFs are “a key component of the national safety net.” The organization pointed out that it is a “fiction” that all community-based settings are better or safer than settings labeled as “institutional.”

“’Community services’ in reality often mean no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover,” the NCSA stated in its comments. 

Among the many unanswered questions involving the HCBS Access Act are how the federal government would pay the cost of 100% reimbursement of all community-based care.

The NCSA made a number of additional observations about the legislation, including the following:

  • The bill is based on a “false assumption that the Medicaid system contains an ‘institutional bias’ that keeps adults with disabilities locked away from the community at large.

The NCSA noted that the steady closure of ICFs and sheltered workshops around the country in recent years “has already had the devastating impact of depriving individuals of critical options.”  

  •  The bill would only support “supported (integrated or community-based) employment and integrated day services.”

According to the NCSA, the bill “could shutter desperately needed programs serving the severely disabled who are incapable of participating in integrated day services owing to their severe cognitive, behavioral, medical and functional challenges.”

We have been raising these same concerns about the closures of ICFs and sheltered workshops in Massachusetts for many years.

  • The bill overlooks the difficulty of finding housing in the community for persons with autism, and the possibility of eviction for those with dangerous or disruptive behaviors. 

We have also noted the potential for isolation of community-based group home residents whose guardians are perceived as troublesome or meddlesome 

  • The bill would establish an “advisory committee” that would place veto power in the hands of a few advocates. The NCSA stated that “a small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals,”

 As we noted about the Disability Integration Act, this new legislation does not comply with the choice provision in the Olmstead v. L.C. U.S. Supreme Court case. In 1999, the late Justice Ruth Bader Ginsburg, who wrote the majority opinion in Olmstead, endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity.

We urge people to email the Senate Special Committee on Aging, as we plan to do, at HCBSComments@aging.senate.gov. Feel free either to paste in this blog post or forward a link to it, along with a short message in opposition to the HCBS Access Act as currently written.

COVID-19 vaccinations appear to be working in the DDS system, but information is lacking

April 5, 2021 1 comment

Data received last week from the state show that as of early March, more than 80% of residents and a little over 50% of staff in residential facilities directly run by the Department of Developmental Services (DDS) had been fully vaccinated for COVID-19.

One would assume that by now, all residents in the DDS system and most of the staff have been vaccinated. But the numbers are almost a month old, and DDS said it does not have vaccination data on residents or staff in provider-run homes.

DDS provided the vaccination numbers for the sate-run facilities on March 29 in response to a Public Records Request we had sent on February 18.

Vaccination data also provided on March 29 by the Executive Office of Health and Human Services (EOHHS) in response to the same Public Records Request does include numbers on vaccinations of residents and staff in provider-run homes. But the EOHHS data is even more out of date than the DDS data.

A spreadsheet provided by EOHHS is dated February 23. The EOHHS data showed that as of February 23, 24% of staff and 38% of residents in the DDS provider-run group home system had been fully vaccinated. EOHHS is the state’s umbrella human services agency, and DDS is located under it.

The chart below, based on the DDS data, therefore shows the most up-to-date information we have from the administration on vaccinations in the DDS system:

Source: DDS

On April 1, I submitted a new Public Records Request to EOHHS, this time asking for current data on vaccinations in both provider-run group homes and state-run residential programs.

In addition to the lack of up-to-date vaccination data, both EOHHS and DDS said they did not have any records on numbers of staff or residents refusing vaccinations. We think the difficulty involved in getting this information on vaccinations in the system is troubling.

Since last May, the Baker administration has been posting at least some information in its online weekly state facilities reports on COVID test results of residents and at least some staff in the DDS system. But getting information on vaccinations is another story.  

COVID test results continue to be promising

Those COVID test results continue to be encouraging, apparently reflecting the large numbers of residents and staff that have been vaccinated.

As of the March 30 state facilities report, residents testing positive in both state and provider-run group homes declined to some of their lowest levels since the COVID crisis began. There have been no residents or staff testing positive at either the Hogan Regional Center or the Wrentham Developmental Center since late February. There have been no deaths of any residents in either facility due to COVID since last November.

The numbers of infected residents and staff in DDS state-operated group homes and in the two developmental centers have also declined to all-time lows since the crisis began.

As of March 30, 9 residents and 12 staff in state-operated group homes tested positive, compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December.

In the provider-run group home system, 32 residents tested positive as of March 30, compared to a high of 305 in January. As we have previously noted, no information is made available by the administration, for unknown reasons, on the number of staff testing positive in DDS provider-operated homes.

Administration won’t comment on the vaccinations or test results

In February, I emailed both EOHHS Secretary Mary Lou Sudders and DDS Commissioner Jane Ryder, asking for comment on whether the vaccines were responsible for the declining numbers of infected persons in the DDS system even at that early period in the vaccination effort. Neither Sudders nor Ryder ever responded. Why the administration won’t comment on this is perplexing.

Month-long delay in providing records

On February 18, I filed an initial Public Records Request with both EOHHS and DDS, asking for:

 1. Records and internal emails that discuss projected timeframes for vaccinating residents and staff in DDS residential facilities; and

2. Records indicating the number of residents and staff who have been vaccinated in DDS residential facilities, broken down by type of facility.

On February 23, I additionally asked for:

3. Records indicating the number of staff and residents in the residential facilities who have refused vaccinations.

As noted, neither DDS nor EOHHS responded with any records until March 29. In its response, DDS stated that it had no internal emails discussing vaccination time frames. While EOHHS did indicate that it had such emails, the agency said it would only provide them if we were willing to pay $1,150 for search and redaction fees.

Also, as noted, both agencies said they had no records on numbers of individuals refusing vaccines.

While DDS had no internal emails on vaccine timelines, the Department stated that the administration had placed residents and staff in congregate care settings under Phase 1 of its vaccine distribution plan. Phase 1 ran from December 2020 through February 2021.

What we know now

At this point, all we can say with any degree of certainty is that most of the residents in state-run congregate care facilities in the DDS system have probably been vaccinated by now. The rest is pretty much conjecture despite our repeated efforts to get more concrete information out of the administration. Those efforts have now included filing two Public Records Requests.

In a letter, dated March 24, to the “DDS community,” Ryder maintained that the administration had heard the “voice” of that community in responding over the past year to the pandemic. “Your voice was instrumental in driving and shaping these developments. You let us know when our policies and protocols went too far – or not far enough,” she wrote.

Ryder added that, “DDS remains committed to hearing your voice, and keeping you informed and engaged as we go.”

If Commissioner Ryder is truly committed to hearing our voice and keeping the DDS community informed, she can start by providing up-to-date information on vaccine distribution in the system, and by responding to our repeated requests for her comment on these matters.

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