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Baker administration leaves DDS staff out of COVID vaccination requirement

September 13, 2021 3 comments

[UPDATE: We have received unofficial information that staff of DDS state-operated group homes and at the Wrentham and Hogan Developmental Centers are subject to the vaccine mandate. It appears those staff fall under an executive order last month applying to executive branch employees.  

However, the much larger corporate provider-operated group home system does not appear to be subject to the vaccine mandate.  

This new information contradicts what an EOHHS spokesperson told us (see post below), which was that no congregate care staff are subject to the vaccine mandate.]

Despite a recent uptick in the number of residents in the Department of Developmental Services (DDS) system who have tested positive for COVID, the Baker administration is not including DDS system staff in a new requirement that health care workers in Massachusetts be vaccinated.

Once again, it appears, people with intellectual and developmental disabilities are subject to looser COVID protections than are the elderly or people with other types of disabilities.

According to the State House New Service, the Baker administration this month announced plans to require COVID-19 vaccinations for all staff at rest homes, assisted living residences, hospice programs, and for home care workers providing in-home, direct care services.

The administration first imposed a vaccine requirement in August on employees of skilled nursing facilities.

Last week, a spokesperson for the Executive Office of Health and Human Services (EOHHS) told COFAR that the latest vaccine mandate does not include “congregate care” staff. We had specifically asked whether the mandate includes DDS-funded group homes, developmental centers, and day programs for persons with intellectual and developmental disabilities.

Although the EOHHS spokesperson didn’t directly answer our question, DDS congregate care facilities would appear to consist of both provider-run and state-operated group homes, which together serve some 9,000 residents and employ tens of thousands of staff. [See updated information above pertaining to state-operated group homes and the developmental centers.]

The EOHHS spokesperson also did not respond to our follow-up question why DDS staff have not been included included in the vaccine mandate. DDS Commissioner Jane Ryder did not respond to an initial inquiry on the matter that we sent her on September 8.

We have raised concerns for several months about unvaccinated staff in the DDS system. It is not clear how many DDS system staff remain unvaccinated.

As of last April, the last time EOHHS apparently tracked staff vaccinations, less than 50% of staff in state-operated DDS group homes were fully vaccinated, and only 51% of staff in provider-run grop homes were fully vaccinated.

Apparent concern over staffing shortage in the DDS system

Given the lack of information or comment from the administration, we are guessing the lack of a vaccine mandate for DDS is due to a staffing shortage, which may be more acute in the DDS system than in nursing homes. It would appear the administration is concerned that requring those staff to be vaccinated would make the shortage worse.

Home care providers in Massachusetts, in fact, are already predicting the vaccine mandate will drive many of those workers to other fields.

One solution, of course, would be to pay direct care workers on the DDS system enough to retain the current workforce and recruit new caregivers. As we’ve reported, federal and state funding exists to do this. But there appears to be no sense of urgency in the state Legislature to distribute the funding, and no effort there to ensure the money will go toward those workers.

Rising number of infected residents

As the State House News Service reported last week, despite the fact that more than 4.54 million people in Massachusetts are now fully vaccinated, COVID continues to spread, apparently driven by the more infectious Delta variant.

The last two online COVID testing reports from EOHHS for congregate care facilities show an increase in residents testing positive in DDS provider-run group homes.

After declining dramatically from a high of almost 250 positive residents in January of this year to virtually zero in June and early July, there were 31 residents listed as positive in provider-run group homes as of this past week’s report (Sept. 7).

The positive COVID rate among provider-run group home residents in the DDS system had started to rise as of the August 10 EOHHS report.

EOHHS reports on COVID rates in DDS and other congregate care facilities are now provided once a month. EOHHS does not report specifically on the number of COVID-positive staff in provider-run group homes.

Importance of vaccinations of staff emphasized

The State House News Service quoted Tara Gregorio, president of the Massachusetts Senior Care Association, as stating that the administration’s vaccine mandates “will create parity, transparency, and accountability within the entire health care system, which is ultimately to the benefit of consumers and their caregivers.”

But parity, in particular, will not fully be achieved throughout the entire health and human services system if DDS staff are left out of the vaccine mandates. DDS manages a budget of more than $2 billion — the largest budget of any line agency in the EOHHS system.

We hope it finally begins to dawn on both legislators and the administration that DDS needs to be included in the staff vaccination mandates, and that those workers need to be paid enough to keep them from leaving the system.

The Britney Spears case is wrongly being used to attack guardianships of persons with developmental disabilities

September 7, 2021 7 comments

In a recent article published in CommonWealth magazine, we discuss the misguided use by many activists of Britney Spears’ controversial guardianship case to discredit guardianship arrangements in general.

As we point out in our article, guardianship is under attack, and the Britney Spears case is wrongly being used to imply that all guardianship arrangements are abusive or exploitative.

We think Spears’ experience is also being used to advocate for legislation that could make it more difficult for family members to become or remain as guardians of persons with intellectual and developmental disabilities (I/DD). In our experience, family members need to have guardianship to ensure they are consulted in the delivery of care and services to their loved ones.

But former Massachusetts Attorney General Scott Harshbarger and former Secretary of Elder Affairs Paul Lanzikos appear to be using the Spears case to push for bills that might limit those family guardianship rights. Citing Spears’ case, Harshbarger and Lanzikos have proposed legislation to create a Massachusetts Office of Adult Decisional Support Services (H.1898 and S.974).

The functions of the Office, as listed in the legislation, are vague; but Harshbarger’s and Lanzikos’s own statements in a separate piece in CommonWealth raise concerns for us about what their proposed Office might be tasked to do.

Harshbarger and Lanzikos wrote that the Office would “improve oversight and best-practices in guardianship and conservatorship, as well as support alternatives to guardianship—such as supported decision-making—statewide” (my emphasis). More about Supported Decision-Making in a moment.

We certainly agree that there are compelling questions as to why someone like Britney Spears remains under guardianship, also known in some states as conservatorship. She is a multi-talented singer, songwriter, dancer, and actress who appears to be involuntarily trapped under the guardianship of her father. She appears to be cognitively normal and capable of making her own life choices.

But not all guardianship arrangements are like Spears’ relationship with her father, and not all persons under guardianship are capable of making their own life choices. Yet that is one of a number of distinctions that appear to be lost or glossed over in Harshbarger’s and Lanzikos’s piece.

Harshbarger and Lanzikos aren’t the only ones using the Spears case in this manner. Activitists around the country and even some members of Congress are using Spears’ experience to attack guardianship.

Supported Decision-Making needs safeguards

Supported Decision-Making (SDM) is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to help them make decisions about their care, finances, and living arrangements, and in other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.

We think SDM can hold promise for some high-functioning individuals; and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

The problem with proposed legislation to implement SDM in Massachusetts (H.272 and S.124) is that, as with earlier versions of the legislation, there appear to be few, if any, such safeguards in it. The bills still provide no standard for determining who might be eligible for SDM.

The SDM legislation continues to avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

We are concerned that the creation of the Office of Adult Decisional Support Services may be a backdoor means of instituting SDM in Massachusetts as an “alternative” to guardianship.

As noted, the duties of the proposed Office of Adult Decisional Support Services are vague, and “decisional support services” are not even defined in the legislation. The Office would be tasked with “developing oversight and accountability procedures to prevent potential errors or abuses by decisional fiduciaries.”  We think better oversight and more accountability are needed in the probate system; but it is unclear what the proposed Office would consider to be abuses.

We have identified what we think are abuses, including the incentives the probate court system in Massachusetts gives to professional guardians to acquire as many wards as possible while doing little to represent them. This raises another distinction that Harshbarger and Lanzikos appear to have failed to make.

Abuses primarily appear to lie with professional guardians

Harshbarger’s and Lanzikos wrote that they are trying “to raise public awareness around guardianship and conservatorship practices that were brought to light by the Spears case, and to provide systems to protect the rights of individuals from the risks of overreaching, or in isolated cases, outright abuse (by) guardians or conservators.”

In our experience, the overreaching that they refer to applies much more commonly to professionals hired to serve as guardians than it does to family members.

Professional guardians of persons with development disabilities are paid by the state Department of Developmental Services (DDS) — a situation that appears to interfere with the guardians’ legal obligation to act in the best interest of their disabled clients. Family members are not paid for serving as guardians of their loved ones.

We have found that professional guardians of disabled clients often have relatively few interactions with their clients, and frequently side with DDS when family members have gotten into disputes with the agency over the care of those clients.

Need for family rights bill

We think reform of the probate system in Massachusetts is needed, and a first step would be passage of H.1733, a bill which would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them. In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome.

But we have seen time after time that it is family members who have their loved ones’ best interest at heart. Family members are often the ones most intimately knowledgeable about their physical and emotional conditions.

A serious discussion of guardianship reform is sorely needed. But, as we noted in our article, the proposal from Harshbarger and Lanzikos appears to be one-sided. Basing their proposal on the Britney Spears case is a key indication of that.

DDS provider head trying to raise the alarm about direct-care staffing shortage

August 30, 2021 5 comments

Shannon Guenette, who heads a corporate agency that runs group homes funded by the Department of Developmental Services (DDS), is trying to get state lawmakers and policy makers to understand the impact the COVID crisis has had on direct care staffing in her agency’s residences.

She is facing a staffing shortage that appears to be afflicting the entire DDS system, yet legislative leaders don’t appear to be aware of it. And DDS Commissioner Jane Ryder confirmed in an email to two COFAR members only late last week that the staffing shortage is a “severe” problem affecting “all of our agencies.”

Guenette,  who is the executive director of Almadan, Inc., which operates three DDS-funded and two Department of Mental Health-funded group homes in western Massachusetts, maintained that, “This isn’t a situation where we can turn grills off at night. My fear is we’re going to hit a breaking point if something doesn’t change soon.

“It’s a heavy weight on our team,” she added. “We have concerns for staff burnout, and worry what will happen if the staff shortage continues.”

The irony is that the state received $5.3 billion earlier this year under the federal American Rescue Plan Act (ARPA). Of that amount, some $500 million can be spent on DDS and other Home and Community Based Services (HCBS). The ARPA is one of the federal stimulus bills passed last spring.

The ARPA funding is earmarked, among other things, for higher pay to at least temporarily recruit new direct care workers.

Yet, Guenette said, even though she understands the federal Centers for Medicare and Medicaid Services has approved the state’s plan for spending the ARPA funding, the money still hasn’t been distributed to DDS group home providers. She said she was told at one point that the ARPA funds might be distributed by late fall. The delay won’t help the current critical need, she said.

In addition to the ARPA funds, the state began the current fiscal year in July with a projected $4.2 billion budget surplus. Yet the money is not reaching direct-care workers.

Guenette said Almadan’s total staff, which is normally around 100 full-time and part-time workers, is now down to 65 employees. Almadan provides residential, shared living, and individual support services, and some of its programs are more than 40 percent vacant in terms of staff.

Low wages have forced many direct care staff to work for multiple providers to earn a living, Guenette said. She said raising wages could help in hiring staff with more experience or passion in the field. Some staff have in fact left to accept higher paying positions in other fields.

DDS commissioner only now commenting on staffing problem

Ed and Gail Orzechowski, who are COFAR members, wrote last week to DDS Commissioner Ryder about the Almadan staffing problem. Gail’s sister, Carol, is a longtime resident of one of Almadan’s group homes in Pelham.

In an emailed response to the Orzechowskis on Friday, Ryder she she is “well aware of the severe staffing shortage all of our agencies are experiencing. It is a great concern to all of us. “

Ryder added that the administration is “in the process of getting the ARPA funds out to our agencies, but unfortunately it will take some time.”  She said the funds  will be retroactive to July 1.

Guenette noted that even though the funds will be retroactive, they are intended to be provided only through December of this year, and thus will only be “a temporary fix for a much larger problem.”

Ryder’s email is the first acknowledement she has made, that we are aware of, of the staffing shortage. Neither Ryder nor state Health and Human Services Secretary Marylou Sudders ever responded to our request in mid-July for comment when we first heard reports of a DDS staffing shortage.

In response to a follow-up email on Wednesday of this week from the Orzechowskis, state Senator Joanne Comerford said she planned  to contact Ryder about the staffing and ARPA funding situations. “ARPA funding is moving through MA — albeit more slowly than I’d like,” Comerford stated.

Legislative leaders don’t see a need for hurry

Despite the concerns about the staffing shortage from Ryder, Guenette, and from parents and guardians of DDS clients, legislative leaders don’t appear to perceive a need for hurry in distributing the federal funding.

According to CommonWealth magazine, Senate President Karen Spilka said in early August she believes there is “wisdom in waiting” to spend federal ARPA recovery money. “We are no longer in the state of emergency, the major state of emergency at the height of COVID,” Spilka said, according to the magazine.

Spilka added that, “We are no longer in the rescue situation where money is needed to be spent urgently and quickly. We are now in recovery mode and back to the more normal budget type of appropriation process.”

But without the additional federal funding, Guenette said, Almadan can’t afford to pay its direct care staff enough to recruit new workers and compete with jobs that pay a living wage as little as $18 an hour.  Almadan is currently able to pay its staff $15.25 an hour. She said she sees the low pay, in part, as a social justice issue because much of the staff of DDS-funded facilities are from marginalized, minority populations.

Guenette said Almadan has been fortunate in that there are currently no COVID positive residents or staff in its group homes. Almadan has a 90% vaccination rate among staff, and 100% among residents. DDS is requiring that staff be tested every week.

She said that when the crisis began, Almadan was proactive in their measures to keep everyone safe “with a dearth of (DDS) guidance.” The agency immediately began purchasing PPE and cleaning supplies, she said, and found food delivery sources that didn’t require any contact with the community.

Many DDS providers, however, are not in Almadan’s advantageous situation with regard to staff vaccinations. The Baker administration last publicly reported in April that less than 50% of DDS provider staff had been vaccinated.

We urge people to call or email their legislators, and call the Children and Families Committee at (617) 722-1660 to ask them to push for quick distribution of the ARPA funding in order to boost direct-care wages in the DDS system.

DDS may be violating federal law in not offering Wrentham and Hogan Centers as options for care

August 18, 2021 4 comments

Recent reports from the Department of Developmental Services (DDS) to the state Legislature show a continually declining number of residents at the Wrentham Developmental Center and the Hogan Regional Center, and indicate there were no new admissions to either facility last year.

The reports have been submitted to the House and Senate Ways and Means Committees in compliance with a requirement each year in the state budget that DDS report on efforts “to close an ICF/IID (Intermediate Care Facility for individuals with intellectual and developmental disabilities).”

The reports appear to confirm that DDS is not offering ICFs/IID (or ICFs/IDD) as an option to persons waiting for residential placements in the DDS system.

If so, that would appear to be a violation of the Home and Community Based waiver of the federal Medicaid Law (42 U.S.C.1396n, s. 1915), which requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives”  for residential placement and care.

In addition, the federal Rehabilitation Act (29 U.S.C., s. 794) states that no disabled person may be excluded or denied benefits from any program receiving federal funding.

The Wrentham and Hogan Centers, and three group homes at the former Templeton Developmental Center are the only remaining ICFs/IDD in the state. As such, they meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.

The state budget language requiring reports on efforts to close ICFs/IDD appears to go back as far as Fiscal 2012, and it implies a bias in the Legislature against those facilities.

We were able to review the three most recent DDS reports to the Ways and Means Committees, for Calendar Years 2018, 2019, and 2020.

From 2018 to 2020, the reports state that the residential population or census at the Wrentham Center declined from 248 to 205, while admissions to the Center declined from only 2 in 2019, to 0 in 2020.

According to the DDS reports, the census at the Hogan Center declined from 119 in 2018 to 88 in 2020, while admissions declined from 18 in 2018, to 0 in 2020. (These census numbers don’t quite match up with other census data we have from the administration on the facilities, but all of the data show a continual decline in the census.)

Families largely satisfied with Wrentham and Hogan Center care

Based on the DDS reports, the decline in the census in both the Wrentham and Hogan Centers is largely due to deaths of residents in those facilities rather than discharges to the community system.

That would appear to support our observation over the years that parents and other family members of Hogan and Wrentham residents have been satisfied with the care at each of the Centers. If they were unsatisfied, they would have tried to seek community placements for their loved ones.

In our view, however, the DDS reports amount to a tacit admission by the Department that the Wrentham and Hogan Centers are eventually closing. The reports explicitly state that DDS will assure a “continuing ICF option” only for persons in the “Ricci class,” which are the dwindling number of people who are currently living in, or previously lived in, the state’s developmental centers.

Ben Ricci was the original plaintiff in the 1970s landmark federal class action lawsuit, Ricci v. Okin, that brought about upgrades in care for residents of the former Belchertown State School and other Massachusetts facilities for the developmentally disabled.

Those upgrades extended to the Wrentham and Hogan Centers. But the yearly DDS reports to the Legislature confirm our concern that DDS does not offer either the Wrentham or Hogan Centers as an option to people seeking residential placements for their loved ones with I/DD.

The declining census and admissions to the ICFs in Massachusetts are reflected in declining budget numbers for those facilities.  In the DDS budget for Fiscal Year 2022, the corporate provider-run group home line item has been funded at more than $1.4 billion. That represents a 91% increase over the funding appropriated for the same line item a decade previously.

In contrast, funding for state-operated group homes and the remaining ICFs has been on a relatively flat or downward trajectory respectively.

Lack of understanding of the role of ICFs

At both the state and national levels, there is a lack of understanding of the critical need for ICFs/IDD and the fact that they that house and serve people with the most severe and profound levels of disability and medical issues.

There is a pervasive and deep-seated ideology that ICFs are overly institutional and prohibitively expensive to operate. But that ideology is misguided.  As the VOR, an organization that advocates for persons with I/DD around the country, noted in a letter to the Senate Committee on Aging in Congress:

Community care does not provide the level or continuum of care needed by most of the I/DD population at the lowest level of these disabilities. Fewer necessary services are not proper care, and in the short-term (much less the long-term) do not provide necessary, life-sustaining care at the same cost level as ICFs.

Yet, the ideology at ICFs are no longer necessary can be found every year, as noted, in language in the Massachusetts budget.

Historical context of anti-ICF ideology

The anti-ICF stance of political leaders and policy makers and even many advocates for the disabled needs to be viewed in the historical context of the deinstitutionalization of people with mental illness and I/DD. That deinstitutionalization grew out of the warehouse conditions of the institutions prior to the 1980s.

Those anti-ICF advocates, however, have largely ignored upgrades in institutions, and particularly the efforts of the late U.S. District Court Judge Joseph L. Tauro, who oversaw the Ricci litigation that brought about improvements in institutional care in Massachusetts.

Deinstitutionalization has become a perfect storm of ideology and money that has kept a firm grip on our political system even though it has essentially been a failure for those it was meant to help. Deinstitutionalization has led to a tide of privatization of services for people with I/DD, and to skyrocketing salaries of executives of nonprofits that contact to provide residential and other care in the DDS system.

Proposed commission vulnerable to anti-ICF ideology

To this day, the anti-ICF ideology persists. At a June 21 legislative hearing in Massachusetts on a proposed state commission to study the history of state institutions for people with mental illness and I/DD, witness after witness denigrated ICF-level facilities as abusive and segregated from the wider community.

The hearing reinforced our concern that the makeup of the commission, as currently proposed, would provide fodder for those seeking to close the Wrentham and Hogan Centers.

As a result, we submitted testimony to a legislative committee considering bills to create the commission (S.1257 and H. 2090) that the commission should be reconstituted to recognize the significant upgrades in care and services that occurred in the state institutions as a result of the Ricci litigation overseen by Judge Tauro.

Calling for parity

That anti-ICF ideology is also reflected in President Biden’s American Jobs Plan, which includes $400 billion to expand access to Medicaid home and community-based services (HCBS) for seniors and people with disabilities.

In June, COFAR joined with AFSCME Council 93, a key Massachusetts state employee union, in warning that President Biden’s proposed $400 billion expansion of HCBS failed to provide any increase in funding for ICF-based care. As such, Biden’s plan could pose a threat to the future of ICF care and other state-run services.

In a jointly written letter to U.S. Senator Elizabeth Warren, COFAR President Thomas J. Frain and AFSCME Council 93 Executive Director Mark Bernard expressed overall support for the expansion of access to HCBS for people with I/DD and the elderly. But the letter noted that without the inclusion of additional funding for ICFs, Biden’s plan would create a strong incentive for Massachusetts to close the Wrentham and Hogan facilities.

As of mid-August, there has been no response to our joint letter from Senator Warren or her staff.

All of this shows how much of an uphill battle it has been to make the case for ICF-level care in Massachusetts and other states. We will continue to work to get the message get out, before it is too late, that ICFs provide a critical safety net of care for some of our most vulnerable members of society.

As the DDS reports to the Legislature show, however, time is running out.

Yet again, the family of a DDS client spots a medical emergency missed by staff and clinicians

August 2, 2021 6 comments

Rosemary and Wilfred Dumont were sure there was something seriously wrong with their son Stephen, 37, who lives in a state-operated group home in Spencer.

In their view, he was having trouble breathing.

But the licensed practical nurse in the residence, who is employed by the Department of Developmental Services (DDS), maintained there was nothing the matter with him.

Stephen has an intellectual disability and is deaf. But while he can communicate using sign language, Rosemary said he will not communicate that he is sick because he is afraid of going to the hospital.

On January 18, 2020, Stephen had come home for the weekend not feeling well. As the DDS investigative report on the case stated, Rosemary noticed his apparent breathing problem.

Rosemary Dumont, Stephen (center), and Will Dumont, while Stephen was still at the former Glavin Regional Center in 2011. The Dumonts maintain that the care Stephen has received in the community-based group home system has not been as good as it was at Glavin. Glavin was closed in 2013.

The following Monday, Rosemary texted the nurse, saying, “It looks like he is having a hard time catching his breath. We noticed it last weekend as well…” Rosemary requested that Stephen be given a nebulizer treatment in his group home before going to bed.

According to the DDS report, the nurse responded that Stephen’s lungs sounded clear and that he was not coughing or wheezing. The nurse and another staff member determined a nebulizer wasn’t necessary.

But Rosemary was still concerned. On Thursday of that week, she texted the nurse a video she had taken of Stephen. In her opinion, it showed him struggling to breathe. But the nurse again responded that she didn’t think Stephen was having any breathing difficulty, although she suggested that Rosemary could call Stephen’s doctor, according to the state report.

On Saturday, January 25 — a week after Rosemary first reported Stephen’s breathing problem — Stephen went home for another weekend visit. As far as Rosemary was concerned, he was no better than he had been the Saturday before. The following day — Sunday — Rosemary texted the nurse and a number of other staff at the group home another video of Stephen.

That video shows Stephen seated and looking uncomfortable. In it, he shifts in his seat as if he might be in pain; his mouth is open, and his eyes look glazed.

But the nurse was still not concerned. She responded in a text message that due to background noise in the video — apparently from a TV — she could not hear Stephen’s breathing. But, she added,  “We walked him yesterday morning. No shortness of breath or wheezing.”

Rosemary texted back to the nurse. “Watch the way he is breathing,” she stated. “He is like glopping for air. No wheezing or any sound. Just glopping for air. I’ve never seen it before. Like when he was a baby on a respirator it is worse when he wakes up.”

The nurse responded only that “he has appt tomorrow morning with neuro.”

Rosemary said the nurse all along had the capability of easily measuring Stephen’s blood oxygen level with a pulse oximeter, a device that clips onto a finger. But the nurse apparently did not measure Stephen’s oxygen level until Monday January 27.

Rosemary said that after Stephen was brought back to the group home on that Monday morning, she visited the residence and noticed that he looked ill. This time, she insisted that the nurse measure his blood oxygen level, and the nurse finally did so. The reading was 74, which was dangerously low.

The nurse at that point did call 911, and Stephen was taken by ambulance to a local hospital. “We almost lost him,” Rosemary said. He was diagnosed with aspiration pneumonia and was intubated for five days. He remained in the hospital for two weeks.

But even his first day in the hospital contained a jarring moment of anxiety for Rosemary and Will. A doctor had inexplicably issued a Do Not Resuscitate order for Stephen without their consent. Had Will not discovered the order and objected to it, Stephen would not have been intubated and would likely have died.

And while Stephen did recover fairly quickly from the pneumonia while he was in the hospital, he had to be returned to the hospital as many as three times in subsequent months with intestinal blockages stemming from the pneumonia. His lungs are now compromised, Rosemary said.

DDS finds insufficient evidence of neglect

After an investigation, DDS determined there was insufficient evidence to substantiate any charges of abuse or neglect on the part of the nurse or group home staff. A departmental “action plan” stated only that Stephen’s care giving team should “consider taking measures so that any concerns regarding (Stephen) are effectively communicated and the necessary support/services can be provided…”

Untreated groin infection

Rosemary said that during the same period in which he was struggling with aspiration pneumonia, Stephen developed a groin infection that the nurse also failed to treat. The infection turned into an open wound, she said, that lasted for the next year and a half.

“Now, I don’t let them (he group home staff) do anything on their own involving his (Stephen’s)  medical care,” Rosemary said. “I make all the doctors appointments.” She said she now also consults with a team of doctors for Stephen who are responsive to his condition and listen to her concerns.

Care was better at Glavin

Rosemary and Will maintain that Stephen’s overall care has never been as good as it was when he was a resident of the former Glavin Regional Center in Shrewsbury, a state-run Intermediate Care Center (ICF) that adhered to strict federal staffing and treatment standards. Glavin was one of four ICFs closed by the then Patrick administration between 2012 and 2015.

Rosemary and Will were among the Glavin families with whom COFAR fought unsuccessfully a decade ago to keep the Center open. Like all ICFs, Glavin provided residential, medical, clinical, and all other services needed by the clients on its campus.

Similarity to other cases 

Stephen Dumont’s case is at least the fourth such case we’ve recently written about in which a family member has noticed symptoms of aspiration pneumonia or other serious medical problems involving their loved ones in group homes in the DDS system. In each of those cases, DDS clinical and other staff failed to recognize a problem, thus placing the lives of the clients in jeopardy.

The Disabled Persons Protection Commission (DPPC) and DDS have been inconsistent in determining abuse or neglect in these cases.

Nick’s case

In a case we wrote about late last year, staff in a corporate provider-run group home in Dracut failed to take Nick Alemesis, a resident of the home, for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Nick’s mother, Cindy, first noticed how ill Nick appeared. She had him taken to a hospital where doctors found that the shunt was leaking spinal fluid into his body.

Nick got sepsis from the leaked fluid, and was in Mass. General for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

DDS and DPPC declined to undertake an investigation in that case. DDS has even subsequently moved in probate court for unclear reasons to remove Cindy as co-guardian of her son.

Maria’s case

In a case we blogged about just over a year ago, Michael Person found his daughter, Maria, unresponsive and breathing shallowly in her provider-run group home, surrounded by staff who were unaware of the problem.

Michael, who knew immediately that Maria’s life was in danger, rushed her to his own home where he keeps a tank of oxygen for her. Maria was then transported to Boston Children’s Hospital and placed on life support in the Intensive Care Unit for 14 days. She remained in the hospital for a total of 27 days.

The DPPC investigation in that case also failed to substantiate abuse or neglect.

Yianni’s case

In yet another case, Anna Eves recognized her son, Yianni, was unable to breathe normally after the staff in his provider-run group home had let his condition deteriorate for a week. Anna finally took him herself to the emergency room of a local hospital in Gloucester.  There, his blood oxygen was measured at 50, which is not compatible with long-term survival.

Yianni was admitted directly to the hospital ICU in critical condition and placed on a ventilator on which he would remain for 11 days. He then spent about a week in the Respiratory Care Unit at Mass General Hospital and subsequently spent about three weeks at Spaulding Rehabilitation Hospital. 

In that case, DDS did substantiate several instances of abuse, although none of the substantiations appeared to relate directly to the failure of the group home staff to seek medical care for Yianni in a timely manner.

Please urge support for H.1733

All of these cases demonstrate how important family members are in ensuring adequate care and safety of their loved ones in the DDS system. That is one of the reasons we are advocating for a perennial bill in the state Legislature (H.1733) that would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them.

In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome. But as Rosemary, Will, Michael, Anna, and Cindy have shown, it is family members who not only have their loved ones’ best interest at heart, they are often the ones most clued in to their physical and emotional conditions.

Increasingly, as ICFs have been closed in the state and more and more services have been privatized, families have become the last line of defense in the care of their loved ones.

Please call the Legislature’s Judiciary Committee and urge the Committee to finally approve H.1773. You can reach the office of Senator James Eldridge, Senate chair of the Committee, at (617) 722-1120; and Representative Michael Day, House chair, at (617) 722-2396.

Tell the Committee staff that this bill is needed to ensure that families have the basic right to a say in the care of their loved ones in the DDS system.

Staffing shortages and low pay affecting care in DDS group homes

July 19, 2021 7 comments

As the Department of Developmental Services (DDS) system in Massachusetts emerges from the COVID crisis, a number of systemic problems are lingering, including reports of staffing shortages in group homes.

The staffing shortages may not be directly due to the pandemic, but the pandemic may have brought matters to a head.

Staffing shortages have long been a potential result of the low pay provided to direct care workers in the DDS system compared with high salaries provided to executives managing the nonprofits operating most of the group homes.

Even with a $4.2 billion surplus in state budget revenues projected for the current fiscal year, there appears to be no sign of urgency on Beacon Hill to address the direct care wage problem. Legislation (H.4171) that would have boosted minimum direct care wages in the DDS system to $20 per hour died at the end of the previous legislative session last December, and apparently hasn’t been revived.

We sent an email query on July 13 to state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, seeking confirmation of the staffing shortages and reasons for them. We sent a similar query to the Legislature’s Children, Families, and Persons with Disabilities Committee.

In our emails, we asked whether there are legislative efforts underway to boost direct care pay in the DDS system in order to recruit more caregivers and prevent others from leaving the system.

Neither Sudders nor Ryder has responded to our query.

A staff member of the Children and Families Committee did get back to us last week, saying a bill has been proposed for the second year in a row that would gradually raise the pay of direct care workers employed by DDS providers to the level earned by similar workers employed by the state.

Unlike last session’s bill, which would have raised direct care pay to $20 per hour, no actual hourly payment amount is specified in this year’s bill, H.237. The measure was referred to the Children and Families Committee on March 29.  A “tentative” vote on the bill isn’t scheduled by the Committee until this coming fall.

In response to a separate query we sent earlier this month to our membership, a number of family members maintained that staffing shortages exist and have caused problems in their loved ones’ residences. One parent said a DDS regional director had confirmed to her that “there is a staff shortage statewide and they are working to recruit people.”

In one case, a DDS official emailed a parent of a state-operated group home resident, saying DDS was “in touch with (the group home management) …to ensure proper staffing ratios are being met at all times.”

But a number of family members said they did not believe staffing has lately been adequate in the residences. One parent said her son needs two staff to assist him. She said, however, that there were only two staff available per shift in the entire residence, whereas there used to be five staff per shift. The parent termed the staffing situation “potentially dangerous.”

Another parent said several staff in her son’s residence were either on vacation, had resigned, or were in training elsewhere. She said the situation resulted in a recent incident in which a resident of the home left the residence unnoticed and was eventually found outside and brought back by staff.

Affecting quality of care

The parent cited above added that the shortage of staff in the residence has been accompanied by a shortage of hygienic supplies such as disposable wipes and body wash. “The lack of good personal hygiene is neglect,” the parent said.

Use of temporary employment agencies

Two family members said the providers running the group homes were using temporary staffing agencies to fill full-time positions. “They come into the house,” said one parent, “turn on the TV and sit down.” The parent said the temporary staff are not allowed to drive, so her daughter “is stuck inside the house all day, sometimes day after day, which is contributing to her health issues.”

A parent of a resident in a state-run group home said a number of the group home Occupational Therapy and Physical Therapy staff were also working in provider-run homes in order to supplement the staffing there.

Need for higher pay for direct care workers

A number of parents pointed out the connection between the staffing shortages in the group homes and low pay for direct care workers.

As one parent put it in an email to us, “Since the governor has a $4 billion surplus, maybe he could give DDS money,” specifically to increase group home staff wages.

A state budget fund was created a number of years ago, in part, to boost direct care wages. The problem is that while the fund has generated surplus revenues for many providers in recent years, little of the money has apparently gone to boost direct care pay.

In 2018, Governor Baker did sign legislation to raise the minimum wage of direct care and other workers to $15 an hour; but the minimum wage won’t reach that amount until 2023. In 2017, the Legislature rejected efforts to raise direct care wages to $15 as of that year, and rejected a bid in 2019 and again last year to raise direct care wages to $20 per hour.

EOHHS no longer tracking staff vaccinations

Also possibly due to the staffing shortage, the administration is not only not requiring working staff to be vaccinated for COVID-19, the administration is no longer tracking the number of staff who are vaccinated. EOHHS said it has never tracked the number of staff refusing vaccinations.

In a response to a June 28 Public Records Request we submitted for the latest numbers on residents and staff in the DDS system who have been vaccinated, EOHHS said they stopped tracking that information as of April 23. That was the last time they provided that information to us.

On April 23, EOHHS gave us information from early that month, indicating that about 50% of staff in DDS-funded group homes had been vaccinated, and 75% to 90% of residents in group homes had been vaccinated. So apparently with only half of the staff in the system vaccinated, EOHHS decided to stop tracking it.

Perhaps given the fact that the administration doesn’t require DDS staff to get vaccinated, the administration decided it isn’t necessary to know how many staff have actually done so. That seems to be a risky approach.

It also seems one of the administration’s biggest fears has been that the COVID crisis would lead to staffing shortages. As a result, the administration was slow to require testing of staff for COVID-19, and has declined to require that staff get vaccinated.

Despite that fear, the administration and Legislature apparently don’t seem to want to do the one thing that would go furthest to prevent staffing shortages — that is, ensure that direct-care staff are adequately paid for the difficult and important work they do.

Our July newsletter is available onlne

The July 2021 issue of our newsletter, The COFAR Voice, is now available on our website, with articles reporting that:

  • The Department of Developmental Services (DDS) has decided to finally lift family visitation restrictions in light of declining COVID rates in group homes and other residential facilities.
  • New data show the number of DDS clients entering the mainstream workforce dropped after October 2019.
  • The Legislature has upheld Governor Baker’s proposed cuts in funding for state-run DDS group homes, ICFs, and day programs; but COFAR made progress this past spring in getting Senate sponsors for budget amendments to restore that funding.

We also have an article about the retirement in June of Colleen M. Lutkevich, COFAR’s longtime, volunteer executive director. But not to worry — Colleen will continue to be available to do what she has done for 35 years — advocate on behalf of families and guardians of persons with intellectual and developmental disabilities.

Check out those articles and more in the new newsletter.

As usual, we welcome your thoughts about these issues, and your feedback in the comments section below.

As COVID rates drop, DDS finally lifts restrictions on visiting group homes

July 2, 2021 1 comment

With numbers continuing to drop of residents testing positive for COVID-19 in the Department of Developmental Services (DDS) system, DDS has finally lifted restrictions on visitation, according to an announcement on the Department’s website.

In the announcement, dated June 14, DDS Commissioner Jane Ryder stated that DDS had “asked our residential settings to return to their pre-pandemic visitation policies and practices” with the following exceptions:

  • Continued screening of all visitors for symptoms of illness and COVID-19 infection.
  • Suspended visitation when a resident is isolating due to COVID infection or there is a COVID-19 outbreak at the program.
  • Visitors must wear masks indoors at the home except if fully vaccinated and visiting a fully vaccinated resident in their room. Staff are still required to wear masks in group homes, regardless of vaccination status.
  • Residents who are fully vaccinated may visit with loved ones who are fully vaccinated without maintaining social distancing or wearing masks, if they choose.

The relaxed visitation guidelines hopefully mean the end of the imposition of contradictory and seemingly arbitrary restrictions, in some cases, on visitation by families of loved ones in the DDS system.

Ryder’s statement came just as the most recent COVID testing data published online, on June 15, showed that positive cases have reached new lows in the DDS system.

For the first time since COVID testing data has been kept, there were zero positive cases among residents in provider-run DDS group homes, and less than 5 residents testing positive in state-run group homes. (See graph below for the testing trend for provider-run residents since June 2020.)

Source: EOHHS online data

In the weeks prior to June 15, the number of residents testing positive in the provider-run homes had held steady at close to 30, while the number testing positive in the state-run group homes had held steady at about 10.

It remains to be seen whether the lower positive rates as of June 15 will continue.  The answer to that question will apparently not be known publicly until July 13, when the next results will be published.

As of June 16, the Executive Office of Health and Human Services (EOHHS) indicated on its COVID reporting site that DDS testing data will be published only every four weeks instead of weekly, as had previously been the case during the COVID crisis.

It is still unclear how many staff in provider-run group homes in the DDS system are continuing to test positive for COVID. That information has never been included in the DDS facilities reports.

The latest report as of June 15 shows less than 5 COVID-positive staff in the state-operated group homes, and zero positive staff and zero positive residents in the Wrentham and Hogan developmental centers.

Staff vaccination rates still unclear

COVID vaccination rates among staff and residents in the DDS system are also not published online.

Based on information provided by EOHHS in response to Public Records Requests from COFAR, we last reported that as of April 9, less than 50% of staff in state-operated group homes were fully vaccinated.  In provider-run group homes, only 51% of staff were fully vaccinated as of April 12.

Some 75% and 90% of residents in provider-run and state-run group homes respectively had been vaccinated as of April 12.

We filed a renewed Public Records request on Monday (June 28) with EOHHS for the latest staff and resident vaccination rates. EOHHS stated that a response will be provided by July 13.

As we have previously noted, the relatively low staff vaccination rates as of April may have been keeping COVID present in the DDS system. However, if COVID rates among residents do remain at zero or close to it in the weeks following June 15, it would almost certainly be due to a high vaccination rate among those residents.

Ryder continuing to push vaccinations for residents

In her June 14 message, however, Commissioner Ryder implied that not all DDS clients have been vaccinated. She noted that a “Homebound Vaccination Program” was available across the state to anyone with trouble getting to a vaccination site.  The number is 1-833-983-0485 to schedule an in-home vaccination.

Restarting day programs

Ryder also said DDS was working with providers to return clients to in-person day and employment programs. She said, however, that those programs are currently “struggling” with staff shortages.

We have reported that day programs were also targeted for major cuts in the governor’s Fiscal Year 2022 state budget. The fiscal year began Thursday (July 1), but the budget has not yet been approved by the Legislature.

Ryder did not mention in her message that in January, Governor Baker specified a $25 million, or 11%, cut in the DDS Community Based Day and Work (CBDW) line item. A major cut in the line item could also make it difficult to return clients to in-person day programs.

The House and Senate subsequently added $15 million back to the CBDW line item, noting that the add-back would primarily be for the development of services in response to the COVID pandemic. But even the House and Senate versions would cut the line item by $10 million, or 4.2%, from the previous fiscal year.

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 DDS data.

As usual, it would be helpful to have more timely information from the administration about the state of the DDS system, particularly regarding COVID vaccination and testing rates for provider staff. The outlook for DDS day programs also remains cloudy as we emerge from the pandemic.

At the same time, the dropping positive COVID rates among DDS group home and facility residents, and the promised return to pre-pandemic visitation policies are very hopeful developments.

A mother’s lonely battle for appropriate care for her son

June 29, 2021 9 comments

Valerie Loveland has felt as though she has had to fight alone to protect her son from indifferent care and even abuse in the Department of Developmental Services (DDS) system.

Her decisions were questioned, she says, not only by the staff in her son’s previous group home in Cotuit, but by DDS officials and even the DDS-paid co-guardian for him. 

At times she has feared that her own co-guardianship of her son might be taken away. (Although she wants her son’s story told here, she requested that his name not be used.)

In addition to other issues she has had to deal with, the state’s response to alleged sexual abuse of her son in March of this year in the group home seems to have been shrouded in secrecy.

Valerie Loveland

Even as co-guardian, she has not been allowed to view the complaint filed in the matter. She has been told only that her son was allegedly sexually abused by a group home staff member, but not what happened.

Tide may have turned

The good news is that in the past few weeks, the tide seems to have turned in her son’s favor.

Although Valerie was not able to get her son into a state-operated group home, as she had hoped, the May Institute did place him earlier this month in a new residence, also in Cotuit. And she said the new group home staff is making an effort to follow her requests to improve her son’s diet, which she said is linked both to his health and his behavior. The staff are also carrying out his occupational therapy plan.

For Valerie, it has all been about introducing common sense to her son’s care. “Maybe we should change what he’s getting to eat,” she said, citing an example. “That might actually save the state money on doctors visits, damage to the residence etc. That’s why I’ve been in their face.” 

But as is so often the case, common sense does not prevail in the DDS system. Valerie’s case demonstrates how family members in the system frequently find themselves pitted against providers, clinicians, probate court judges, and bureaucrats. The family members’ concerns and wishes for their loved ones are too often disregarded or overridden.

Valerie’s son, who is 23, has an intellectual disability, is non-verbal, and needs 24-hour care. He has now been a resident for the past five years in three separate group homes on Cape Cod run by the May Institute.

Valerie said DDS had attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement.  The other co-guardian is an attorney who is paid by DDS and who has other wards as well. 

She said there had been problems in the previous Cotuit-based group home with cleanliness and thefts of her son’s electronic devices that help him communicate. In March, her son was allegedly sexually abused by a staff member of the group home. The incident was apparently reported to the Disabled Persons Protection Commission (DPPC) by another staff member.

Valerie has been told that DPPC is still investigating as are police. Her request to DPPC for a copy of the written complaint in the case was denied because the investigation is still underway. 

Son’s care has taken a financial toll

After the alleged assault, Valerie removed her son from that group home and cared for him at home. He was placed in the new May Institute group home in Cotuit on June 19.

Valerie, who lives in Chatham, estimates that it has cost her thousands of dollars in lost income to care for her son at home and drive him each day to his day program in Mashpee.

Valerie works in grocery delivery and part-time in aromatherapy, and is working for a college degree in alternative medicine. She said the DDS-paid co-guardian has largely been uninvolved in her son’s physical care, but criticized her decision to remove her son from the group home in which he was allegedly abused.

She and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about 2 or 3 years old. Valerie cared for her son at home until he was 18.  Her ex-husband owes her child support, she said, but has disappeared. Even private investigators, including one hired by the state Department of Revenue, haven’t been able to find him.

May Institute executives well compensated

Despite her tenuous financial situation, Valerie has had to deal with a system dominated by well-paid corporate executives and powerful state officials. The May Institute’s Fiscal Year 2019 tax filing with the IRS listed a dozen executives of the nonprofit organization as having received more than $100,000 each in salary and other compensation that year.

That list was topped by May Institute President and CEO Lauren Solotar, who received almost $477,000 in total compensation, followed by the COO, who received close to $331,000. Five other executives made more than $200,000 each.

COFAR President Thomas J. Frain maintained that with compensation levels that high, the May Institute’s executives should be held accountable for ensuring that all of its clients receive adequate and appropriate care.

Instead, Valerie said it is only now that she feels the organization understands and is responding to  her son’s needs.

Saw diet as cause of problems

Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses. She said the group home tried to bill her for the expenses; but, as his Social Security representative payee, she argued that the staff needed to try to understand his behavior.

Valerie maintained that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.

Until recently, there was resistance to her efforts, even from the other co-guardian. As late as May 31, the other co-guardian stated to her in an email: “Instituting a diet change for anyone is a major step. Especially if the reason is not medically required.”

Prior to her son’s placement in his new group home, the May Institute residential director for Cape Cod wrote to Valerie on June 2, saying the provider would not be able to meet her dietary requirements for her son.

That has lately changed, Valerie said. The new group home staff appear to be making an effort to follow those requirements.

Pushback on other efforts to protect son

Valerie said that over the past year, she encountered pushback from the provider, the co-guardian, and DDS to other efforts she was making to protect her son. Those included her initial efforts to remove her son from the first group home, even after the abuse allegation surfaced.

Valerie said she asked DDS several times after learning of the March abuse allegation about moving her son to another group home; but the area office said nothing was available due to the COVID crisis.  As a result, she said, she took her son home with her.

In a May 25 email, the DDS-paid co-guardian stated, “I trust the May Institute and its staff to be working for the best for (her son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”

As late as June 2, the co-guardian said he continued to “fully object to his (her son’s) removal from May until a response from DDS is obtained.”

Valerie claimed that as recently as a month ago, the co-guardian threatened in group meetings with DDS and the provider to have her removed as co-guardian. “He said he would take me to court to have me removed,” she said. She added that during those meetings, “no one from DDS or May said a word” in response.

Valerie said the co-guardian finally relented regarding removing her son from the first group home, and earlier this month approved his move to the new residence.

Denied use of bathroom

When the May Institute finally suggested the new group home for her son, Valerie took on the task of easing the transition for him to the new residence. She drove him to the new residence on May 26 to help him get acquainted with it and with the residents and staff.

But she herself wasn’t allowed inside, even to use the bathroom after the hour-long drive from her home in Chatham.

The reason given for denying her entry to the residence was the COVID crisis. But both she and her son were vaccinated, and her son was allowed inside even without a mask.

 “I didn’t understand why I couldn’t run in and use the bathroom,” she said. “I wasn’t asking to stay inside. I was asking for toilet facilities. It seemed unreasonable to me.”

When Valerie later wrote to May Institute officials to complain, the May institute residential director responded that, “At this time, indoor visitation is not approved under state guidelines.” But that was not the case according to the DDS guidance, dated March 19, which was then in effect.

The DDS visitation guidance gave the providers discretion regarding indoor visits, stating that any restrictions should not be arbitrary. COFAR reported in May that many DDS group home providers were continuing to impose highly restrictive visitation requirements on family members even if all of the residents had been vaccinated.  

Since her son moved into the new group home, Valerie said the residential staff has allowed her inside.

Valerie said she is hopeful that a new era of common sense-based care has begun for her son in his new group home. But she said she is mindful of the difficulties she has faced and the long road she has traveled to get him to this point.

She also recognizes that although the situation today for her son appears better than it was a few months or even weeks ago, that could change.

“I think it’s important for people to understand this type of situation isn’t a ‘one and done’ for a complex kid like my son,” she wrote to us. “His being nonverbal has been a big challenge for him and staff. I’ve been the bridge. I won’t always be here. I keep trying to figure that part out…”

COFAR and AFSCME warn that President Biden’s HCBS expansion plan could harm ICFs

June 21, 2021 3 comments

COFAR has joined with AFSCME Council 93, a key Massachusetts state employee union, in warning that President Biden’s proposed $400 billion expansion of home and community-based services for people with disabilities and the elderly could pose a threat to the future of state-run services.

In a jointly written letter to U.S. Senator Elizabeth Warren, COFAR President Thomas J. Frain and AFSCME Council 93 Executive Director Mark Bernard expressed overall support for Biden’s proposed expansion of access to affordable home and community-based services (HCBS) for people with I/DD and the elderly.

But the letter noted that Biden’s plan fails to similarly propose any additional funding for state-run Intermediate Care Facilities (ICFs) for persons with I/DD and complex medical needs.

Expanding only HCBS, the letter said, would pose “a serious threat to the future of critically important ICF-level care in this country…(and would) interfere with the ability of individuals, particularly those with severe forms of I/DD, to access the residential settings and programs that meet their needs.”

Biden’s $400 billion HCBS expansion plan is part of his $2 trillion American Jobs Plan, a proposal to Congress to rebuild the American economy and the nation’s infrastructure.

The two remaining state-run ICFs in Massachusetts are the Wrentham Developmental Center and the Hogan Regional Center in Danvers.

Steering increased funding only toward community care would create a strong incentive for Massachusetts to close the Wrentham and Hogan facilities, the AFSCME-COFAR letter stated.

In addition to stripping the DDS system of a badly-needed component of the continuum of care for the developmentally disabled, the closure of the ICFs would jeopardize the jobs of approximately 1,400 union workers represented by AFSCME alone. 

ICFs provide needed choice  

The joint letter noted that choice in care is only meaningful if individuals are given access to the services that they need and prefer. As the United States Supreme Court held in the 1999 Olmstead v. L.C. case, there must be a recognition that, on a case-by-case basis, that setting might be in an ICF.  

But the Massachusetts DDS does not routinely inform either individuals or their families who are waiting for residential placements even of the existence of either ICFs or state-operated group homes. The only “choices” routinely offered are corporate provider-run group homes or, in some cases, shared living arrangements. As such, families do not have a real choice along a full continuum of care.

The number of residents at the Wrentham and Hogan ICFs and in state-operated group homes has been declining in Massachusetts for several years. State funding for state-operated services has also been flat or has declined over the past decade.

In contrast, funding has skyrocketed for corporate, provider-run group homes. Successive administrations have long engaged in a race to privatize DDS services.

Calling for parity

The joint letter noted that In Fiscal Year 2019, Medicaid spending nationwide was $76 billion for HCBS and $9 billion for ICFs. Out of total Medicaid spending nationwide for long-term supports and services, 59% was spent on HCBS and 7% on ICFs. 

If the Massachusetts Legislature concurs with Governor Baker’s proposed funding for DDS for Fiscal Year 2022, the corporate provider line item will be funded at more than $1.4 billion. That would represent a 91% increase over the funding appropriated for the same line item a decade previously, in Fiscal 2012. 

In contrast, funding for state-operated group homes and the  two remaining ICFs has been on a relatively flat or downward trajectory respectively.

When adjusted for inflation, the governor’s Fiscal 2022 budget would cut funding for state-operated group homes  by somewhat less than 1% from the current fiscal year. The Wrentham and Hogan centers would similarly see their funding cut in Fiscal 2022 by a total of $2.1 million. Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.

The joint letter stated that the ongoing under-funding of state-run DDS programs has resulted in the increasing privatization of those programs and services.

Massachusetts State Auditor Suzanne Bump’s office reported in 2019 that while the resulting boost in state funding for privatized care produced surplus revenues for corporate providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Disparity in care

The joint letter stated that In 1993, then U.S. District Court Judge Joseph L. Tauro  ordered that ICFs in Massachusetts not be closed unless it was certified that each resident would receive equal or better care elsewhere. Judge Tauro was bringing an end to a landmark consent decree (Ricci v. Okin), which had resulted in major upgrades in care and services in the DDS system.

As the years went on, however, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness.

In testimony in 2018 to the state Legislature’s Children, Families, and Persons with Disabilities Committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect in the DDS system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Olmstead did not call for the closure of ICFs

The late U.S. Supreme Court Justice Ruth Bader Ginsburg wrote the majority opinion in the Olmstead case (referred to above). The decision has continued to be mischaracterized as advocating or requiring the end of institutional care. It didn’t. Justice Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided financial windfalls for politically connected corporate contractors. Their executives have garnered large increases in their personal compensation, but have frequently neglected to pass through the  higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, COFAR calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By COFAR’s calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

What we are asking for

The COFAR-AFSCME letter asked for Senator Warren’s support in achieving the following goals:

  • Parity in public-sector funding for ICFs and other state-run services with funding for privatized services. The letter suggested that an increase in the federal Medicaid match for HCBS should be matched by an increase in matching funding for ICFs. For example, a 10-percentage point increase in the federal match (FMAP) for ICFs would be roughly $1 billion nationwide. 
  • Ensuring a dedicated funding stream for state-operated group homes for individuals with I/DD.
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