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Father points out the personal impact of our neglect of adequate wages for caregivers
While the state provides almost $2 billion a year to privately run corporations to deliver a wide range of services to people with developmental disabilities, policy makers and legislators have historically been reluctant to fund even small increases in wages to actual caregivers.
In the case of parents of children with disabilities, the state provides no financial remuneration at all. At least one of those parents would like to see that changed.
We’ve written before about John Summers and his efforts to care for his non-speaking, autistic son Misha. In an opinion piece in The Boston Globe on May 18, Summers talks about the difficulty he has had in finding Personal Care Attendants (PCAs) to come to his home to help him provide daily care to Misha.
That difficulty Summers is facing is due to an ongoing staffing shortage that has afflicted virtually every facet of the state’s human services system since the start of the COVID pandemic some three years ago.
But there’s more to it than the lack of available staff. Summers, as a caregiver himself to his disabled son, receives no financial help from the state to do that work even though caring for Misha required him to leave his job and has dropped his income below the poverty line.
We have on many occasions called for adequate wages, benefits, and training for direct caregivers in the provider-run group home system funded by the Department of Developmental Services (DDS). The same neglect of the caregiver role exists when it comes to the funding of services to people living in their private homes, which is ostensibly where the state wants disabled people to live.
As Summers notes, “the concept (of PCA services) reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care.” Yet Summers contends the system as practiced today “cheats “ caregivers like himself.
Parents should be paid as caregivers
MassHealth allows consumers to hire just about anyone they want, including friends and relatives, to provide personal care services to themselves or others in their homes. But so-called “legally responsible relatives,” particularly parents, are barred from receiving state funding for caregiving.
As Summers points out in his article in the Globe, payment to legally responsible relatives is prohibited by the federal Medicaid law. But the state’s Home and Community Based Services (HCBS) waiver allows for the development of state programs that don’t meet specified Medicaid requirements. Payment of parents as caregivers is one such practice that can be permitted under the waiver. So far, however, MassHealth has not sought such permission from the federal government.
According to Summers, state legislators have filed bills since 2015 to allow legally responsible relatives and guardians to be paid for caregiving services. One such bill, S.775, is now before the Legislature’s Health Care Financing Committee.
Governor Healey, however, could act as well to seek such a waiver. Given the ongoing staffing shortage among PCAs and other caregivers, it would make a lot of sense to do so.
Governor labels PCA staffing shortage a priority
Summers points out that Governor Healey has pledged to place the “crisis-level” staffing shortages in the MassHealth Personal Care Attendant Program at the “top of her list.”
It is currently unknown, however, how many of the tens of thousands of persons who are enrolled in the state’s PCA program aren’t receiving PCA assistance due to the staffing shortages. The Healey administration needs to get a handle on that number for a number of reasons.
State funding for PCAs unspent
Summers, for instance, provided us with data he received from MassHealth on May 23, after he had filed a Public Records request for it. The data show the state appropriated more than $432 million in funding for personal care attendant services between 2012 and 2022 that was never spent, apparently because of a lack of available PCAs.
There is a keen irony here. More PCAs would become available if they were paid a living wage for their work. Instead, they are paid just $18 an hour, pursuant to a recent collective bargaining agreement.
The irony is that the $432 million in unspent funds implies there is enough money to boost the pay of caregivers in the human services system. While we have called for a raise to $25 an hour, Summers has suggested $50. So far, no one seems to have information on how much money is available or actually needed to fully address the direct-care wage problem.
Bureaucratic, privatized structure
What the state has done has been to perpetuate a privatized bureaucracy to administer the PCA program, just as it has built a largely privatized group home system funded by DDS. Summers believes the bureaucratic hurdles that the state has imposed have further discouraged people from applying to become PCAs and have led many to leave that profession.
As Summers points out, PCAs are paid though Tempus Unlimited, Inc., a private “fiscal intermediary.” Those workers will soon have to submit to a potentially intrusive process called Electronic Visit Verification, which is administered by Optum, another private firm.
It seems the state and federal governments are using the Electronic Visit Verification system to target PCAs for potential fraud. But are individual PCAs really committing most of that fraud, or does PCA fraud primarily take the form of improper billing by managers of the PCA provider companies? As usual, the direct care workers get few of the benefits of the system in which they work, but incur most of the blame. It’s apparently good politics.
Misplaced priorities
In sum, it appears the state has over-funded the PCA line item each year for the past 10 years, apparently due to continuing staffing shortages. Yet, the state could have used that funding each year to raise the hourly wages of the PCAs, which might have helped solve the staffing shortage problem.
There is also clearly more than enough funding available to pay parents such as Summers to enable them to care for their disabled children so that those parents are not forced into poverty.
It is not clear that the state has a handle on the extent of the PCA staffing shortage either or on the extent of potential fraud in the system. Yet, the state has created a privatized, bureaucratic administrative process for its PCA program that appears intended to inconvenience and place the blame on the very people who are the key to making the system work – the parents and caregivers.
We hope that in placing the PCA problems at the top of her list, Governor Healey will recognize and work to correct these misplaced priorities.
After being cleared of abuse, mother continues to face restrictions in contact with her son
More than a year after the state rescinded an abuse charge against Christine Davidson for allegedly having given her son too much Tylenol and cough syrup during a weekend visit home, the Department of Developmental Services (DDS) is continuing to restrict her contact with her son, she says.
Christine said DDS officials and managers of the corporate provider running her son John’s group home in Waltham are continuing to restrict the amount of time on weekends that John can come home to visit her.
Christine’s case appears to fit a pattern in which DDS and its providers have placed restrictions or bans on family contact with loved ones in the DDS system for questionable reasons. (See here, here, here, and here.)
Christine said she has been told by two of the managers of the corporate provider, WCI, Inc., that “it depends on how I behave” as to whether John can stay home with her for more than one night on weekends. She said the implication is that she can’t be trusted in caring for her son, particularly in giving medications to him.
Christine Davidson and her son John
Christine said the continuing lack of trust in her appears to stem from an abuse allegation against her, which the state Disabled Persons Protection Commission (DPPC) had initially determined was “substantiated.” The agency later reversed that determination.
Christine faced the abuse charge after she was unable to wake John up in the morning of June 21, 2021. She called 911 that morning, and John was brought to the Newton Wellesley Hospital emergency room. He quickly recovered after being given oxygen.
In an investigative report issued in October 2021, the DPPC concluded that John’s hypoxemia or low oxygen level had likely been caused by Christine because she had allegedly given him an “undetermined” amount of cough syrup and Tylenol that weekend, and had failed to have him use a prescribed breathing assistance machine at night.
COFAR examined the DPPC’s investigative report and reported in January 2022 that the Tylenol and cough syrup with codeine that Christine had provided her son had been prescribed by his primary care doctor, and that there was no evidence presented by the DPPC that she did not follow the prescriptions. COFAR also noted that the group home had, at the time, failed to deliver the required nighttime breathing equipment for John to Christine’s home or to train her in how to use it.
Christine was represented in appealing the abuse substantiation by Thomas J. Frain, COFAR’s president, who is an attorney.
Following the initial substantiation of the abuse charge in October 2021, all visits to Christine’s home by John were suspended, and all of Christine’s visits to the group home were required to be supervised. John was not even allowed to go home to visit Christine on Christmas in 2021.
But in February 2022, the DPPC, in a rare reversal, essentially agreed with COFAR’s findings, and changed the abuse designation from “substantiated” to “unsubstantiated.” In a letter rescinding the abuse charge, a DPPC assistant general counsel stated that he “(did) not find that the conclusions of the (investigative) Report were supported by the weight of the evidence.”
Home subject to cockroach infestation
Christine has, meanwhile, continued to blow the whistle on allegedly poor care and conditions in the group home. Last year, two medical specialists backed up her claims that her son was not receiving needed physical therapy in the residence and was declining physically there. Her allegations about those issues, however, do not appear to have been investigated by the DPPC.
In February of this year, John’s group home was shut down for a month due to a cockroach infestation, leading DDS to order WCI to assess all of its group homes for “any hazards.” During the shutdown, John and four other residents were relocated to a hotel in Woburn.
Christine said that both she and her son had repeatedly complained to WCI in previous months about the roaches and about other allegedly unhygienic conditions in the residence.
Blame placed on Christine
Christine said John’s clinical team, which includes DDS and provider employees, has continued to treat her as if she is not responsible enough to care for her son without continuing restrictions and supervision.
Christine said that after the group home was reopened in March following the insect infestation, the clinical team permitted John to stay overnight at her home only on one night each weekend. She said the group home staff would drop him off each Saturday at 11 a.m. at her house, and pick him up on Sunday at 7 p.m. Yet, she said, John didn’t want to return to the group home on those Sunday nights.
This past weekend, the clinical team agreed to begin alternating between one-night and two-night weekend visits home for John. But Christine said those decisions have been made without her or John’s input, and that the clinical team does not appear to take John’s preferences into account. The team decisions, she said, “are an insult to John and to me too. I’ve done everything I could for him, all his life.”
Christine said the clinical team decisions are not in writing, but have been conveyed to her by WCI management personnel.
Decisions are made in conjunction with co-guardian
Christine said that while she has no input into the clinical team decisions, a nephew of hers, who was appointed as John’s co-guardian, is regularly consulted in the decision-making process.
Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in what was then a new group home.
In a settlement of the matter, Christine was allowed to remain as co-guardian, and her nephew, George Papastrat, who lives in North Carolina, was appointed as John’s second co-guardian, with all medical and residential decision making powers.
Christine said that whenever she requests changes in John’s placement or asks for increased visitation, she is told by DDS that Papastrat must agree to it. But she said she feels she has no influence on Papastrat.
While Christine may not have formal decision-making power under the co-guardianship decree, it is clear that she has her son’s best interests at heart and that she has always fought for adequate care and services for him. It also appears that the clinical team does not fully understand the severity of the problems with care and conditions in the group home.
We think that at a minimum, the members of John’s clinical team should rethink their presumptions regarding Christine’s ability to care for her son, and she should be consulted in all decisions regarding his care. Moreover, there is no reason, as far as we can see, to continue to impose restrictions on Christine’s contact with her son.
Mass Arc echoes our concern that DDS faces ‘systemic failure’ in providing services
Almost two years ago, we first reported that direct care staffing shortages were causing a potentially serious deterioration in residential and day program services in the Department of Developmental Services (DDS) system.
We have also reported repeatedly that the ongoing staffing shortages have caused worsening conditions in the group home system and a lack of meaningful activities in community-based day programs.
Now, the Arc of Massachusetts — an organization that lobbies for DDS residential and day program providers — is echoing our concerns. GBH News, citing the Arc, reported on April 27 that “up to 3,000 Massachusetts residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields.”
The public radio news outlet quoted Maura Sullivan, a senior Mass Arc official, as saying:
There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases. (my emphasis)
We would emphasize that we believe that thousands of Massachusetts residents are waiting not only for day program services, but for residential placements as well. In her remarks, Sullivan did not refer specifically to day program services, but to a lack of services in general.
The resources may be there
What the Arc isn’t saying is that the corporate providers are well funded in the state budget. The provider residential line item will have grown from $847 million, ten years ago, to more than $1.7 billion, under Governor Healey’s Fiscal Year 2024 budget proposal.
We think there is sufficient funding in the DDS system to provide needed services. It’s just that DDS isn’t using the resources in an optimal way. An example of that is DDS’s neglect of the ICFs and state-operated group homes as potential resources.
We have suggested to families whose loved ones are either receiving substandard services or are waiting for services that they ask DDS for placements in either the state-run Wrentham or Hogan ICFs, or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
While the state has continued to pour money into the corporate provider system, the number of residents in the state’s state-operated group homes and state-run ICFs have continued to drop.
As of the fall of 2021, we heard that state-operated group homes were being closed, and last month, we received records from DDS indicating that those closures were the result of insufficient staffing of corporate provider-run group homes. Yet, the records also indicated that the state-operated group homes continued to have vacancies.
Poor pay of direct care workers not the result of a lack of resources
We agree with the Arc that the human services direct care workforce continues to be grossly underpaid, and that this is a primary reason for the continuing staffing shortages.
Where we disagree with the Arc is that it once again doesn’t appear to us that the problem of low pay for direct care workers is necessarily due to a lack of resources.
The increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We hope the Healey administration is open to a new approach to this problem. The new administration needs to redirect more of the state’s resources to state-run programs, and needs to ensure that those resources get to those who underpin the entire system — the direct care workers.
COFAR blog 