Critically needed federal stimulus money still hasn’t come through for DDS residential providers facing staffing shortages

November 29, 2021 1 comment

Shannon Guenette still hasn’t seen any of the money even though Congress and the Biden administration released $8.7 billion in federal stimulus funds to Massachusetts last March.

“We’ve received some guidance (from the state regarding the funding), but we haven’t received any additional funds,” Guenette, executive director of Almadan, Inc., said five days prior to Thanksgiving. Almadan is a group home provider in the western part of the state to the Department of Developmental Services (DDS).

In August, Guenette told us her agency and other DDS providers throughout the state desperately needed the additional federal funding to retain workers in light of a worsening shortage of direct-care and clinical staff.

The Baker administration in Massachusetts has targeted hundreds of millions of dollars of the federal American Rescue Plan Act (ARPA) funding for human services workforce retention and recruitment.

But the state Legislature took months to come up with its own plans for distributing the funding after at least one legislative leader said they didn’t see a need for hurry.

Earlier this month, state legislators went home for their Thanksgiving recess without having reconciled Senate and House bills (S.2564 and H.4234) that specify differing distribution plans for the money.

Meanwhile, other than noting there will be three rounds of ARPA funding distribution, the administration itself has provided little clear information about the details of its distribution plan such as how many workers and which agencies would receive the money, and how much of that funding would go toward higher wages.

Under the administration’s plan, the first round of funding was supposed to augment provider rates by 10% from last July through December of this year. But, as noted, no money has reportedly been distributed for residential programs.

Repeated queries by COFAR to DDS Commissioner Jane Ryder and to Health and Human Services Secretary Marylou Sudders about the DDS staffing shortage and how to address it have gone unanswered.

Even when the ARPA money is finally distributed, we are concerned about a potentially low limit set on the amount of funding per worker under the Senate and House bills. Also of concern is a lack of clear oversight of the distribution of the funding.

And it appears at least some of the funding is intended to be used to move residents out of the state’s two remaining developmental centers and into the already overburdened privatized group home system.

A $2,000 limit per worker

Language in both the Senate and House bills would limit funding for higher wages to $2,000 per worker. It’s not clear how effective such a payment would be in recruiting and retaining workers, particularly if it is only a one-time payment.

The Senate bill would also establish an advisory panel to make recommendations to the administration regarding the “Essential Employee Premium Pay Program.” The panel’s report is due with its recommendations by March 31, 2022.

The advisory panel sounds like a potential recipe for further delay without necessarily providing a structure for ensuring that the funding goes to the workers.

The distribution of funding to workers may not have sufficient oversight

Information posted online by the administration requires DDS providers to attest or essentially promise that 90% of the additional ARPA funding they receive will be used for “compensation for their direct-care workforce.” That could include, “among other things,” hiring and retention bonuses.

While the providers will be required to submit spending reports, it isn’t clear that the administration has dedicated sufficient resources to auditing such reports and ensuring that the money is going in all cases to front-line staff.

State Auditor Suzanne Bump’s office reported in 2019 that increases in state funding to DDS and other providers resulted in surplus revenues for the providers, but that those additional revenues led to minimal increases in wages for direct-care workers.

According to Bump’s audit, while the increased state funding was at least partly intended to boost direct-care wages, it “likely did not have any material effect on improving the financial well-being of these direct-care workers.”

Some ARPA funding may be used to “divert” residents from developmental centers

According to the administration’s distribution plan, at least $44 million of the ARPA funding will be used starting in Round 2 to “divert” clients “towards community living … and away from facility-based settings.”

We are concerned that while at least some of this funding would reportedly be used to prevent the inappropriate placement of DDS clients in hospitals or nursing homes, a portion of the funding may be used to further reduce the population of facilities such as the Wrentham and Hogan developmental centers.  As such, this funding would only further reduce choices in residential care for DDS clients.

The residential population at both Wrentham and Hogan have been declining in recent years, and admissions to both facilities were zero in 2020.

Providers cite need for funding and higher pay for direct-care workers

In September, a provider-based “Collaborative” provided written testimony to the state Legislature’s Ways and Means Committee chairs seeking $174 million per year for five years in ARPA funding for human services organizations. The money was being sought “to provide recruitment and retention incentives to workers to help combat the workforce crisis in the sector.”

The Provider Collaborative testimony said the $174 million would affect about 34,800 staff earning less than $60,000, and nurses and clinicians earning less than $90,000.

The Collaborative noted that low wages paid to direct-care workers are a problem. “The low rates of pay for direct-care staff… coupled with complex, difficult jobs have led providers to struggle with recruiting and retaining workers even before the COVID-19 pandemic impacted programs,” the testimony stated.

The Collaborative blamed those low wages on the state’s “rate-setting process.” We think, however, that many providers, as the state auditor noted, could afford to pay more to their workers.

Shannon Guenette told us that Almadan is currently only able to pay its staff $15.25 an hour. The Collaborative stated that the median salary for direct-care workers is $16.79 an hour. According to the Collaborative, the MIT Living Wage calculator notes a living wage for a single person in the area is $17.74 an hour.

All of this points to the need for quick action to distribute the ARPA funding. It’s unfortunate that legislative leaders don’t appear to recognize that there is, and has been, a need for hurry. There is also a need for effective oversight of the funding to make sure it gets to those workers.

Family doctor opposes DDS’s continuing effort to remove mother as co-guardian of her son

November 16, 2021 8 comments

The primary care doctor for the past eight years of a man with an intellectual disability is voicing opposition to a continuing effort by the state to remove the man’s mother as his co-guardian.

For more than a year, the Department of Developmental Services (DDS) has, for unclear reasons, been seeking the removal in probate court of Cindy Alemesis as co-guardian of her son Nick. That is despite the fact that Cindy appears to have saved her son’s life in 2018.

In a letter intended to be submitted to the probate court, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he has “witnessed how Cindy cares for Nicholas over the years.

“She (Cindy) is very active in his care, concerned for his well-being, makes sure he does not miss medical appointments, and has always acted in the best interest of her son,” Dr. Ahmed wrote in the letter, dated November 9. He added, “I am confident that removing Cindy as co-guardian of her son will not be in the best interest of Nicholas.”

Cindy was the first to notice how ill her son was in December 2018, and got him to a hospital for lifesaving treatment after his group home staff missed a critical medical appointment for him with Dr. Ahmed.

Nick, who is 29, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Staff in Nick’s group home in Dracut failed to take him for a scheduled morning ultrasound appointment with Dr. Ahmed on December 19 of 2018. The ultrasound would likely have shown that Nick’s brain shunt was leaking spinal fluid into his stomach.

DDS’s only stated reason in its petition for Cindy’s removal, which was filed in October 2020, was that she had made decisions that were not in her son’s best interest. The Department’s petition did not say what those decisions were.

Nick and his mother, Cindy Alemesis

Eight months at Mass. General Hospital

In a previous letter, which Dr. Ahmed wrote following Nick’s hospitalization in 2018, he stated that he had examined Nick on December 17 of that year, two days before Nick fell ill.

During the December 17, 2018, visit, Dr. Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m. Dr. Ahmed’s letter added that, “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, Dr. Ahmed said Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, Nick fell ill during a church service in the evening of December 19. During the ride back home in a church van, Cindy insisted that Nick be taken to Lowell General Hospital. There, doctors found that the shunt was leaking spinal fluid into his body. Cindy didn’t know at the time that the ultrasound appointment had been missed.

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

Staff missed medical appointments

After Nick’s recovery and release from the hospital in July 2019, Cindy  regularly complained that staff in the group home, run by LifeLinks, a provider to DDS, were continuing to miss medical and dental appointments for him.

In his November 9 letter in the case, Dr. Ahmed stated that “Nicholas has missed doctors appointments. Cindy notices the missed appointments and advocates for her son.”

Cindy filed a complaint in October 2020 with the Disabled Persons Protection Commisson (DPPC), alleging that the group home was continuing to miss medical appoints for her son. But DPPC screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form stated that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

Cindy said that during the past year, her contact with her son has remained sharply restricted by DDS and the provider.

DDS guardianship removal petition raises question of retaliation

In 2019, Cindy had sought to remove the other appointed co-guardian for Nick. That co-guardian is paid by DDS, according to DDS records. Cindy maintains that the other co-guardian has been uninvolved in Nick’s care and lives in Florda. Cindy’s effort in court to remove the other co-guardian was unsuccessful.

That previous court battle, however, raises a question whether the current effort by DDS to remove Cindy as co-guardian is being done in retaliation.

A pre-trial conference in the case has been scheduled for December 15 by Probate Court Judge Melanie Gargas.

We are continuing to advocate on behalf of Cindy, and we intend to join with Dr. Ahmed in stating to Judge Gargas that Cindy has always acted in her son’s best interest and should not be removed as his co-guardian.

As we have noted in the past, this case fits a pattern in which DDS and providers have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

It is unfortunate that DDS has dragged out this case as long as it has. The Department’s effort to remove Cindy as her son’s guardian and the restrictions placed on her contact with her son have placed unimaginable stress on her. Those restrictions have also hampered Cindy’s efforts to advocate for the best possible care for Nick.

We urge DDS to drop its effort to push Cindy out of her son’s life, and to begin to work with Cindy to rectify the problems she has identified with her son’s care in his group home.

 

 

 

DDS state-operated group homes facing a staffing and possible closure crisis

October 22, 2021 11 comments

State-operated group homes for persons in Massachusetts with developmental disabilities appear to be facing a perfect storm of staffing shortages, potentially unvaccinated staff, and a possible departmental effort to shut at least some of the residences down.

The staffing shortages are also affecting the much larger network in the state of corporate provider-operated group homes funded by the Department of Developmental Services (DDS). But we are increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.

We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.

Resident moved without notice

This week, we received a report that a state-run group home in western Massachusetts was being closed and that at least one of the residents was moved without written notice as of Thursday (October 21) to a location in another town.

Earlier this month and this week, we received reports from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated for COVID-19.

We have not been able to confirm those reports about closures of homes in southeastern Massachusetts. A DDS official privately told a COFAR member that no state-operated group homes had yet been closed in the region as of mid-October, but that some closures could happen after October 17. The official referred to the possibility of “temporary consolidations” of group homes around the state.

In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated. While the executive order apparently applies to staff in state-operated group homes and the Wrentham and Hogan Developmental Centers, the separate provider-operated DDS group home system is apparently not subject to the vaccination mandate.

It is not clear how many staff in the DDS group home system 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 group homes were fully vaccinated.

Administration officials not commenting

On October 14, we emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) with questions about the reports of closures and consolidations in the state-operated group home network.

To date, Ryder has not responded to our query. A spokesperson for EOHHS said we would have to file a Public Records Request for that information.  On October 15, we filed a Public Records Request, and EOHHS responded that same day that that agency did not have any records relevant to our query.

DDS regulations may be violated by sudden closures

Under DDS regulations (115 CMR 6.63), DDS clients cannot be transferred without a 45-day notice and the opportunity for a hearing unless the the Department determines that the transfer is “an emergency involving a serious or immediate threat to the health or safety of the individual or others.”

Western Mass DDS staff urge Ryder to address staffing shortages

Meanwhile, on Wednesday (October 20), the Massachusetts Nurses Association, a union that represents nurses in the DDS system as well as hospitals around the state, reported that several DDS employees in western Massachusetts had sent a letter in late September to Commissioner Ryder “imploring her to intervene in a growing patient-care crisis that is unfolding in many of the region’s DDS group homes.”

The letter stated that staffing shortages in both state-operated and provider-operated group homes were causing “significant increases” in client injuries requiring emergency room treatment, and in the placement of untrained staff in homes.

The MNA letter said some staff were being forced to work overtime due to staffing vacancies, and that one staff worker was reportedly required to work 48 hours straight.

The MNA letter to Ryder was dated September 21. The union said that as of October 20, Ryder had not responded.

COVID rates in the DDS group home system continuing to climb slowly

In the midst of the continuing staffing and apparent vaccination problems, the latest online COVID testing report from EOHHS shows a slow, but continuing increase in individuals testing positive in DDS state and provider-run group homes. In state-operated group homes, the number of residents testing positive rose from 3 to 6.

Among staff in the state-operated group homes, the number of those testing positive rose from 11 to 12 between September 7 and October 5.

In provider-run homes, the number of residents testing positive jumped from 31 in September to 49 in early October. The administration, however, does not report the number of staff testing positive in the DDS provider-run system.

Census in state-ops and ICFs declining

Whether or not there are plans to close state-operated group homes or the Wrentham or Hogan Developmental Centers, the administration has nevertheless been letting the residential populations or census drop in these facilities. In addition, funding for these facilities has dropped or has remained flat for years. (See here and here.)

Documents provided by DDS on September 21 in response to a Public Records Request for records on the number of admissions to state-operated group homes, confirm that the census in those facilities has been declining since Fiscal Year 2015. We previously received information from DDS showing a decline in the census and virtually zero admissions in 2019 and 2020 at the Wrentham and Hogan Centers.

The census in DDS provider-operated group homes grew by an average of 124 residents per year between Fiscal Years 2008 and 2021. However, the census in state-operated group homes grew by an average of only 3 residents per year.

Moreover, since Fiscal 2015, the census in state-operated group homes has actually dropped by an average of 18 residents per year while the census in provider-operated group homes has continued to grow by an average of 83 residents per year. The number of residents in state-run group homes was almost 10% lower in Fiscal 2021 than in 2015.

The data show there have been admissions each year to the state-operated homes.  But those admissions have apparently been more than offset by deaths in those residences.

Future is concerning

In sum, all of these numbers and trends are concerning, as is the administration’s policy not to respond to questions either from us or from unions such as the Mass. Nurses Association.

We may learn a little more if DDS does provide records relevant to our Public Records Request concerning the reported state-operated group home closures.  But in the meantime, we are left to wonder what the administration is planning to do – or is actually doing — to address the staffing shortages in the DDS system.

At the very least, we hope the administration doesn’t view the staffing shortages and the problem of unvaccinated staff as opportunities to further downsize the state-operated group home system.

Video has a controversial and disturbing, but important message about autism

October 8, 2021 4 comments

Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.

The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.

The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.

Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”

The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.

It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.

As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”

And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.

But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.

We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.

Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.

Attacks on guardianship

The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). 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.

In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear 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.

It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.

Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:

People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.

Integrated employment

The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.

The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.

It’s all about money and privatization

The ideological position that the community-based system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.

But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”

As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.

Time to end virtual legal immunity for DDS nonprofit providers

September 27, 2021 7 comments

Under a state law that is now a half century old, corporate providers to the Department of Developmental Services (DDS) can’t be sued for more than a nominal amount of money even if they are found to be responsible for serious instances of abuse or neglect of their clients.

We think it’s time to change or end the Charitable Immunity Law (M.G.L. c. 231 Section 85K), under which the legal liability of nonprofit organizations in Massachusetts is limited to a maximum of $20,000 in most cases. Very few attorneys will even consider representing clients in cases in which such a low level of allowable damages is allowed.

This situation has contributed to the overall poor quality of care and conditions that is frequently found in group homes in the DDS system.

By way of disclosure, Thomas Frain, COFAR’s president, is an attorney who represents DDS clients. He maintains that raising or eliminating the $20,000 cap would provide an avenue of redress for those clients and their families that isn’t currently available.

“The 300 companies contracting with DDS to care for people with developmental disabilities should be held accountable just like everybody else,” Frain said. “There was a time that these charities got by with bake sales, can drives and private benevolence; but no more.  The executives are handsomely paid and should be called to task when they inflict or ignore suffering.”

While states have different standards regarding charitable immunity, Massachusetts is one of the few states left with a charitable immunity statute that imposes such a low cap on liability, Frain said.

We think the $20,000 cap needs either to be significantly raised or eliminated entirely. We support the intent of H.1599, a bill which would eliminate the cap.

Legislation similar to H.1599 has been proposed for many years in the state Legislature. The bill is currently in the Judiciary Committee.

In testimony that we submitted last week to the Judiciary Committee, we noted that unless the chariable immunity cap is raised or eliminated, egregious cases of neglect by nonprofits in the DDS system will continue to go virtually unpunished, creating an enormous accountability problem.

Tommy Shea case

In one case we have blogged about, Maureen Shea’s son, Tommy,  who was 33, had an intellectual disability and was subject to epileptic seizures while asleep.

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

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

In June, 2017, Tommy was found dead, face-down on his bed. The batteries in the monitor were later found to be dead.

We think Maureen should have the right to sue the provider that failed to take promised measues that would have kept her son alive.

Nick Alemesis case

In another case we wrote about late last year, staff in a DDS 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 Massachusetts General for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

There has been zero accountability in that case. DDS and the Disabled Persons Protection Commission (DPPC) declined even to undertake an investigation in that case. Not only does Cindy not have the ability to sue the provider for an amount over $20,000, but DDS has subsequently moved in probate court for unclear reasons to remove Cindy as co-guardian of her son.

The cap history and its aftermath

The charitable immunity law in Massachusetts goes back to the 1870s when the state Supreme Judicial Court ruled that a public hospital could not be held liable for an injury to an individual in the hospital’s care.

The SJC reversed its position in the 1969 case of Colby v. Carney Hospital, leading to the enactment by the Legislature of the current Charitable Immunity statute in 1971.  Despite the specification of a $20,000 cap under the law, most nonprofit organizations today carry insurance that could cover them for much higher damages.

As Attorney Jeffrey Beeler said to the Judiciary Committee, in testifying in favor of a bill to eliminate the Charitable Immunity Law in 2006, the $20,000 cap has resulted in a financial windfall for insurance companies. The statute has, at the same time, forced many injured plaintiffs to depend on Medicaid and other taxpayer-funded programs to pay for the treatment of their injuries.

Providers that purchase insurance are capable of paying much larger claims than the $20,000 stipulated by the cap without being harmed financially. As Tom Frain noted, these providers are often able to pay hundreds of thousands of dollars per year to their executives.

In sum, we believe raising or eliminating the charitable immunity cap entirely is a necessary step in restoring accountability and equity to the system of care of persons with developmental disabilities in Massachusetts.

Baker administration leaves DDS staff out of COVID vaccination requirement

September 13, 2021 4 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.

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