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DDS provider head trying to raise the alarm about direct-care staffing shortage
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
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. § 1396a(a)(8)), which states that intellectually disabled individuals have the right to ICF 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
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.
COFAR blog 