DDS finally acknowledges it doesn’t keep track of whether there are vacancies in state-operated group homes
For almost a year, we had been trying to clarify with the Department of Developmental Services (DDS) whether there are – and we suspect there are – continuing vacancies in the Department’s network of state-operated group homes.
Finally, in a clarification issued earlier this month in an appeal we filed with the state public records supervisor, a DDS attorney stated flatly that, “DDS does not track state-operated group home vacancies.”
While it’s helpful to know it would be a waste of time to continue to ask DDS for information it clearly says it doesn’t have, the Department’s clarification still raises a number of questions. First, why doesn’t DDS track what appears to be basic information about its state-operated group home network?
Secondly, even though thousands of people with intellectual and developmental disabilities are waiting for residential placements and other services from DDS, why would the Department not have any interest in knowing whether its state-run network has available beds for them?
One troubling answer to those questions is that the Healey administration does not view state-run residential services as a viable option for those thousands of waiting clients. This is borne out by evidence that DDS is letting the state-run system die by attrition.
DDS does not generally inform people seeking residential placements of the existence either of its network of state-run group homes or of its two remaining state-run congregate residential centers – the Wrentham Developmental Center and the Hogan Regional Center. Instead, the Department directs those people to its much larger network of state-funded group homes that are run by corporate providers.
In many cases, families have told us that when they have asked about placements in state-operated group homes, DDS has stated that there are no vacancies in such homes in their area. That is despite the now-apparent fact that DDS doesn’t actually know whether there are vacancies or not.
Ambiguous statements about information on vacancies
For close to a year, DDS provided ambiguous responses to requests we made under the Public Records Law for information on the number of vacancies in the state-operated group home network in recent years.
In September 2023, I first filed a Public Records request with DDS, asking for “the number of vacancies in the state-operated group homes each year from Fiscal Year 2019 to the present.” I also asked for data on the census, or number of residents in the state-run group-home system, and the capacity, or total number of available beds in the system.
DDS responded that it did not have “any responsive records pertaining to the number of vacancies in the state-operated group homes each year from Fiscal Year 2019 to the present.” However, the Department added in that same response that, “The Department can provide the number of vacancies in state-operated group homes as of June 30, 2023, which is 91.”
Given that the Department was both saying it didn’t have information on the number of vacancies each year, but did have that information with regard to a specific date, I appealed to the public records supervisor. The public records supervisor agreed that it was unclear whether DDS did or did not have information about those vacancies.
DDS then responded with a statement that only appeared to add to the confusion. The Department stated:
Vacancies are not tracked by the Department independently from the capacity and census data provided above. Vacancy numbers are more complicated as they are dependent on a number of real time factors, including but not limited to the temporary placement needs of individuals, staffing, and other group home demographics.
Finally, this past July 10, after I had requested information on the number of vacancies through April of this year, DDS issued the following clarification:
DDS does not have in its possession, custody, or control the state-operated group home vacancies on the specific dates requested because DDS does not track state-operated group home vacancies. (my emphasis)
One-time “exercise” to determine vacancy number
In its July 10 response, the Department also sought to explain how it had come up with the number of 91 vacancies as of June 30, 2023, despite not tracking vacancies.
DDS stated that prior to my original Public Records request in September 2023, “DDS employees participated in an exercise which resulted in identifying the approximate number of state-operated group home vacancies as of June 30, 2023.”
However, since then, “no similar exercises have been conducted,” the DDS response stated.
That explanation, however, only appears to raise further questions.
Why, for instance, did DDS attempt on one occasion, but never again, to determine the number of vacancies in its group-home network?
Based on questions like that, I filed a new Public Records Request with DDS on July 12, seeking all documents relating to the Department’s exercise, which resulted in identifying the approximate number of state-operated group home vacancies as of June 30, 2023.
DDS stated that it will provide a response to my request as of Friday of this week (August 2).
DDS data on census and capacity raise further questions about possible vacancies
Despite the lack of data about vacancies, the data DDS has provided about the census and capacity of the state-operated homes implies to us that vacancies do exist in the group-home network.
As the chart below shows, the capacity in the state-operated group home system was close to 1,150 in the just-ended Fiscal Year 2024 (as of June 30). But the total census was only 986.
Source: DDS
The capacity as of June 30 was 16.4% higher than the census, implying that there were as many as 162 vacant beds in the state-run group home system that year.
The chart further shows that while the census (depicted by the blue columns) has steadily declined in the homes since Fiscal 2019, the capacity (red columns) declined through Fiscal 2022, and then began to rise in 2023 and 2024.
The gap between the census and capacity of the homes since Fiscal 2019 can be seen in the differences in the heights of the blue (census) and red (capacity) columns in the chart. That data appear to imply that the number of vacancies in state-operated homes has been rising since Fiscal 2022.
DDS, however, states, as noted, that it cannot confirm the number of actual vacancies in the homes because it doesn’t track them. The Department also maintains that vacancy numbers are “more complicated” than the difference between a group home’s census and its capacity.
DDS stated that the number of vacancies in group homes is “complicated” because it is “dependent on a number of real time factors, including but not limited to the temporary placement needs of individuals, staffing, and other group home demographics.”
It’s not clear to us what DDS actually means by that statement. It is not clear why the number of vacancies, for instance, would depend on staffing in the homes. In that case, it would seem that capacity would also depend on staffing. Yet, DDS was able to provide us with data on that capacity.
DDS’s reference to the temporary placement needs of individuals would appear to imply that the total census in the homes also changes over the course of the year due to temporary placements of certain individuals. Yet in that case as well, DDS was able to provide us with data on the census in the group homes.
It is unclear why DDS is able to track both the census and capacity of the homes, yet can’t or doesn’t track the number of vacancies. All three of those variables – census, capacity, and vacancies – would appear to depend on either staffing or temporary placements. Why are vacancy numbers more complicated than either census or capacity numbers?
The DDS data on the state-operated group homes raise many questions, as we’ve said. Unfortunately, DDS has repeatedly declined to answer our questions about the data.
We hope that the additional records DDS is scheduled to provide us about the one-time exercise it conducted will shed a little more light on the important vacancy question.
State lawmakers mum about abusive care providers who are avoiding placement in the Abuser Registry
Last week, we brought a concern to the attention of some 50 state legislators that there seems to be a serious problem with the state’s Abuser Registry.
New data we received from the state show that a majority of care providers whom the state has affirmed committed abuse against persons with intellectual and developmental disabilities have nevertheless been able to avoid having their names placed in the Registry.
The lawmakers to whom I sent an email on July 17 containing the link above to our report include the members of the Children, Families, and Persons with Disabilities Committee, the Mental Health, Substance Use and Recovery Committee, and the Health Care Financing Committee.
Those are the principal committees in the Legislature that deal with human services issues.
No response
To date, I haven’t received a response from any of those legislators. I followed up on my original email with a second email on July 18 to the counsel to the Children and Families Committee, and left follow-up phone messages over the past week with the co-chairs of each of the three committees.
It’s not clear to us why none of those lawmakers is willing even to say they will look into our findings. We would hope a potentially serious problem with the Abuser Registry would be of interest to all legislators.
The Abuser Registry was established under “Nicky’s Law” as a means of ensuring that individuals who have been affirmed to have committed “Registrable Abuse” cannot be hired or continue to serve in the Department of Developmental Services (DDS) system even if they don’t have criminal records.
The Registry is a database that the state and its provider agencies must check before hiring new caregiving personnel. Placement of the name of an individual in the Registry means that person is no longer eligible to work for DDS or for any agency funded by DDS.
Data show most abusers’ names not being placed in Registry
We agree that equitable use of the Abuser Registry requires balancing the protection of disabled persons from abuse with due process for accused care providers.
But as we reported, new data we received from the Disabled Persons Protection Commission (DPPC) under a Public Records Law request raise a question whether the scales in that balance might be weighted too heavily in favor of the care providers.
The data show that in only 36% of the cases in which DPPC affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the Registry. The DPPC data covered a three-year period since the database was first put into use in July 2021.
The relatively low number of care providers who have been barred from further DDS-funded employment appears to be due to provisions in the Registry regulations that appear to give wide discretion to DPPC to decide whether an individual is fit to continue to provide services.
Even if a Registrable Abuse allegation is initially substantiated against a care provider, the regulations state that the provider can petition the DPPC to argue that they should not be placed in the Registry because the alleged incident of abuse was “isolated and unlikely to reoccur,” and the provider is “fit to provide services.”
Determining whether an incident of abuse was isolated could potentially require DPPC to determine whether the individual had prior abuse allegations lodged against them. But while the regulations state that DPPC may consider information like that, the regulations don’t require DPPC to take any particular factor into consideration.
According to the DPPC data, the names of a total of 102 care providers have been placed in the Registry during the three-year period since the Registry took effect. That is 38% of the total of 266 care providers who received initial notices of substantiated Registrable Abuse in that period.
But the finding that was more concerning to us has to do with the 161 decisions the DPPC made regarding petitions that were filed by care providers to overturn initial abuse substantiations against them.
Of 132 petition cases in which the DPPC ultimately upheld the initial abuse substantiations, the agency concluded that only 47 of those substantiated abusers should have their names placed in the Registry. That is only 36% of the 132 cases.
In 85, or 64% of those cases, the DPPC determined that the abuse wasn’t Registrable, meaning the care provider should not be placed in the Registry. The agency somehow determined in those 85 cases that even though abuse had occurred, those incidents were isolated and unlikely to reoccur and the care provider was fit to provide services.
We supported the Nicky’s Law legislation, which became law in 2020, and continue to do so. But as we said in our post last week, we think the balance between safety due process needs to be adjusted.
You can help find out what’s up with our legislators
Are our legislators who are entrusted with considering and voting on matters affecting the lives of some of the most vulnerable members of our society satisfied with the Registry’s record after three years? If they are satisfied with it, why not say so? If they aren’t satisfied, why not say that?
Below is a list of the legislators whom I emailed last week expressing our concern about the Registry. Lawmakers who serve on more than one of the committees listed below are listed only once.
If any of these legislators represents your district, please feel free to email them and forward this link to our previous post, even though they should already have it. (Don’t feel you have to email more than your own senator or representative, or more than one or two of the co-chairs of the three committees. We would suggest that you email one legislator at a time.)
Ask for a response, and, if you get one, please let us know what they have to say.
Children, Families, and Persons with Disabilities Committee
Sen. Robyn Kennedy, co-chair, Robyn.Kennedy@masenate.gov
Rep. Jay Livingstone, co-chair, Jay.Livingstone@mahouse.gov
Sen. Becca Rausch, vice chair, Becca.Rausch@masenate.gov
Rep. Jessica Giannino, vice chair, jessica.giannino@mahouse.gov
Sen. Lydia Edwards, lydia.edwards@masenate.gov
Sen. James Eldridge, James.Eldridge@masenate.gov
Sen. Paul Mark, Paul.Mark@masenate.gov
Sen. Patrick O’Connor, Patrick.OConnor@masenate.gov
Rep. Rita Mendes, Rita.Mendes@mahouse.gov
Rep. Michelle Ciccolo, michelle.ciccolo@mahouse.gov
Rep. Adrianne Ramos, Adrianne.Ramos@mahouse.gov
Rep. Carol Doherty, carol.doherty@mahouse.gov
Rep. David LeBoeuf, david.leboeuf@mahouse.gov
Rep. Natalie Higgins, Natalie.Higgins@mahouse.gov
Rep. John Moran, john.moran@mahouse.gov
Rep. Donald Berthiaume, Donald.Berthiaume@mahouse.gov
Rep. Alyson Sullivan, alyson.sullivan@mahouse.gov
Mental Health, Substance Use and Recovery Committee
Sen. John Velis, co-chair, john.velis@masenate.gov
Rep. Adrian Madaro, co-chair, Adrian.Madaro@mahouse.gov
Sen. Julian Cyr, vice chair, julian.cyr@masenate.gov
Rep. Michelle DuBois, vice chair, Michelle.DuBois@mahouse.gov
Sen. Nick Collins, Nick.Collins@masenate.gov
Sen. Brendan Crighton, brendan.crighton@masenate.gov
Sen. John Keenan, John.Keenan@masenate.gov
Rep. Sally Kerans, Sally.Kerans@mahouse.gov
Rep. Christopher Markey, Christopher.Markey@mahouse.gov
Rep. Michael Kushmerek, Michael.Kushmerek@mahouse.gov
Rep. Simon Cataldo, Simon.Cataldo@mahouse.gov
Rep. Tram Nguyen, tram.nguyen@mahouse.gov
Rep. Kate Donaghue, Kate.Donaghue@mahouse.gov
Rep. Susannah Whipps, Susannah.Whipps@mahouse.gov
Rep. Steven George Xiarhos, Steven.Xiarhos@mahouse.gov
Health Care Financing Committee
Sen. Cindy Friedman, co-chair, Cindy.Friedman@masenate.gov
Rep. John Lawn, co-chair, John.Lawn@mahouse.gov
Sen. John Cronin, vice chair, John.Cronin@masenate.gov
Rep. Kathleen LaNatra, vice chair, kathleen.lanatra@mahouse.gov
Sen. Paul Feeney, paul.feeney@masenate.gov
Sen. John Keenan, John.Keenan@masenate.gov
Sen. Jason Lewis, Jason.Lewis@masenate.gov
Rep. Brian Murray, Brian.Murray@mahouse.gov
Rep. Steven Ultrino, Steven.Ultrino@mahouse.gov
Rep. Christine Barber, Christine.Barber@mahouse.gov
Rep. Lindsay Sabadosa, lindsay.sabadosa@mahouse.gov
Rep. Patricia Duffy, Patricia.Duffy@mahouse.gov
Rep. Kip Diggs, Kip.Diggs@mahouse.gov
Rep. Jack Lewis, Jack.Lewis@mahouse.gov
Rep. Christopher Worrell, Christopher.Worrell@mahouse.gov
Rep. Hannah Kane, Hannah.Kane@mahouse.gov
Rep. Mathew Muratore, Mathew.Muratore@mahouse.gov
Rep. F.J. Barrows, fred.barrows@mahouse.gov
Thanks!
Even after affirming abuse, DPPC places care providers in Abuser Registry only 36% of the time
When an “Abuser Registry” was authorized in Massachusetts with the enactment of “Nicky’s Law” in 2020, we joined many others in welcoming it as a major step forward in ensuring adequate and safe care for persons with intellectual and developmental disabilities.
Under the law, the names of caregivers against whom abuse and neglect allegations are substantiated are placed in the Abuser Registry — a database that the state and its provider agencies must check before hiring new personnel. Placement of the name of an individual in the Abuser Registry means that person is no longer eligible to work for the Department of Developmental Services (DDS) or for any agency funded by DDS.
Equitable use of the Abuser Registry requires balancing the protection of disabled persons from abuse with due process for accused care providers.
But new data we have received from the Disabled Persons Protection Commission (DPPC) under a Public Records Law request raise a question whether the scales in that balance might be weighted too heavily in favor of the care providers.
The data show that in only 36% of the cases in which DPPC affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the Registry.
The DPPC data covered a three-year period since the database was first put into use in July 2021.
The chart below summarizes our analysis of the DPPC data.
The Registry statute and regulations differentiate between individuals who are referred to as “caretakers” and those who are “care providers.” Only names of care providers can be placed in the Registry.
A care provider is a person who is employed by either DDS or an agency that contracts with DDS to provide services to persons with intellectual or developmental disabilities. Care providers can include volunteers.
If DPPC initially substantiates an abuse allegation and determines that the abuser is a care provider, DPPC notifies that individual of a substantiated finding of “Registrable Abuse.”
Caretakers, who include family members and others persons who are not employed by DDS or its contractors, can be investigated by DPPC and DDS for abuse; but they are not subject to placement in the Registry.
DDS and its contracting service agencies must check the Registry prior to hiring care providers.
As part of the effort to ensure due process, the Registry statute and regulations allow care providers, against whom Registrable Abuse allegations have been initially substantiated, to file petitions with DPPC to prevent their placement in the Registry.
The DPPC data show that during the three-year period since the inception of the Registry, DPPC upheld initial abuse findings involving 132 care providers who had filed petitions challenging those substantiations; yet the agency determined that only 47 of those care providers should have their names placed on the Registry. In 85 of those cases, the agency concluded that the care providers were still fit to continue providing services.
The relatively low number of care providers who have been barred from further DDS-funded employment appears to be due to provisions in the Registry regulations that appear to give wide discretion to DPPC to decide whether an individual is fit to continue to provide services.
Even if a Registrable Abuse allegation is initially substantiated against a care provider, the regulations state that the DPPC can decide not to place that individual in the Registry if the alleged incident of abuse is found to be “isolated,” or if the provider is found to be “fit to provide services.”
Determining whether an incident of abuse was isolated could potentially require DPPC to determine whether the individual had prior abuse allegations lodged against them. But while the regulations state that DPPC may consider information like that, the regulations don’t require DPPC to take those particular factors into consideration.
Confirmed abusers not necessarily placed in the Registry
When a care provider petitions DPPC to overturn an initial finding of Registrable Abuse, one of three things can happen. DPPC can:
- Determine that the abuse substantiation was not supported by a preponderance of the evidence. In that case, the substantiation finding is reversed, and the care provider’s name is not placed in the Registry.
- Uphold the abuse substantiation, but determine that the incident was isolated and unlikely to reoccur, and that the care provider is fit to provide services to persons with disabilities. In that case, referred to as a “split decision,” the care provider’s name is similarly not placed in the Registry.
- Determine that the substantiation is supported by a preponderance of the evidence and that the care provider has not shown that the incident was isolated or that they are fit to continue to provide services. In that case, the care provider’s name is placed in the Registry.
If a care provider does not file a petition to overturn a Registrable Abuse substantiation, their name is automatically placed in the Registry.
In our view, the second outcome above involving consideration of care provider petitions is problematic. How does DPPC determine whether an incident of abuse is unlikely to reoccur or that a caregiver is fit to continue to provide services?
Under the regulations, there are a number of factors that DPPC may consider, including whether the care provider “received training relevant to the incident at issue”; the care provider’s employment history in working with individuals with disabilities; prior instances of similar conduct by the care provider; any statements or communication regarding the care provider’s work history and fitness to provide services; and whether the care provider’s conduct “could reasonably be addressed through training, education, rehabilitation, or other corrective employment action and the care provider’s willingness to engage in said training, education, or other corrective employment action.”
But as noted, the regulations say only that each of these criteria may be considered by the DPPC, not that they must be considered. At least some of these criteria also seem vague and potentially easy to establish.
So it’s not necessarily the case that DPPC, for instance, would consider prior instances of similar conduct in determining whether to approve or deny a petition to overturn a Registrable Abuse substantiation. As a result, it seems that the regulations may provide care providers with a relatively easy path to avoid placement in the Registry.
The DPPC doesn’t agree with our conclusions. An attorney with the DPPC defended the Registry statute and regulations, saying they were “drafted with input from various stakeholders to balance the safety of persons with I/DD (intellectual and developmental disabilities) and the due process rights of care providers.”
The DPPC attorney added that the agency “believes that the seven enumerated but non-exhaustive factors in (the regulations) are neither vague nor do they present an ‘easy path’ for exclusion from the registry. Each Petition is carefully analyzed based on its unique circumstances.”
Our analysis of the data
We analyzed DPPC data concerning Registrable Abuse for Fiscal Years 2022, 2023, and 2024, the years that the Registry has been in existence.
The DPPC data show an average of 13,500 allegations of abuse were filed each year, but DPPC “screened in” only an average of 2,400 of them per year for investigation over the three-year period. Of those screened-in allegations, DPPC and DDS initially substantiated Registrable Abuse involving 266 care providers.
Of those 266 care providers who had Registrable Abuse substantiated, 180, or 67%, filed petitions with DPPC, contesting the substantiations. The names of the remaining 86 providers, who didn’t contest the abuse substantiations, were automatically placed in the Registry.
The data show that over the three-year period, DPPC issued decisions in 161 of the 180 petition cases. As of June 17 of this year, 19 of those cases were still pending.
According to the data, DPPC upheld the initial abuse substantiations in 132, or 82%, of the 161 petition decisions. However, in 85, or 64%, of the 132 cases, the agency determined that the abuse wasn’t Registrable, meaning the care provider was fit to continue providing services and should not be placed in the Registry. Those were so-called split decisions.
In only 47 of the 132 cases, in which abuse substantiations were upheld, did DPPC determine that the care providers’ names should be placed in the Registry.
The data further show that a total of 24 care providers, against whom DPPC had affirmed Registrable abuse, exercised their additional right under the regulations to appeal to the Division of Administrative Law Appeals (DALA), an independent state agency that conducts adjudicatory hearings. DALA overturned DPPC’s decisions in only 2 of those 24 appeals.
According to the data, a total of 102 names of individuals were placed in the Registry during the three-year period. That is 38% of the total number receiving initial notices of substantiated Registrable Abuse.
We think the DPPC regulations need to be made more stringent to ensure that while due process should remain for care providers who are accused of abuse, unfit providers do not continue to work in the DDS system.
In considering care provider petitions, DPPC should be required to consider all of the enumerated factors in the regulations, particularly a care provider’s previous incidents of abuse and previous work history. Those factors are critically important in determining whether a given incident of abuse is isolated or not. Leaving it to DPPC’s discretion whether to consider those factors invites distrust of the agency’s decisions.
We also think DPPC should be required to consider impact statements from the victims and their families.
Registry established because of paucity of criminal convictions
Prior to the establishment of the Registry, caregivers in Massachusetts were prevented by law from working in DDS-funded facilities only if they had prior criminal convictions. However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the DPPC, it does not usually result in criminal charges.
Thus, the Abuser Registry was intended to ensure that individuals who have been affirmed to have committed Registrable Abuse cannot be hired or continue to serve in the DDS system even if they don’t have criminal records.
We believe that in this respect, the establishment of the Abuser Registry was a major step forward in the care of persons with intellectual and developmental disabilities. But we think the balance between safety of those individuals and due process that is afforded to their care providers needs to be adjusted.
DDS and provider deny request to use anti-choking device in group home
It was a scary moment for Suzanne Marshall when she learned that her brother Gary had nearly choked to death while eating in his group home in Lexington in January.
Gary uses a wheelchair and can’t assist in efforts to administer the Heimlich maneuver or CPR on him.
As Gary was choking, a staff member first applied several sharp blows to his back, which did not dislodge the food particle. Then a male staff member dragged him out of his wheelchair, placed him on the floor and administered CPR, which successfully dislodged it.
While the episode had a fortunate outcome, Suzanne is concerned that it could happen again, and that this time, a staff member capable of getting Gary out of the wheelchair might not be available.
Suzanne noted that often at the group home, there are either only one or two female staff working. She is concerned that in this situation, a single staff person may not be strong enough to pull her brother out of his chair. He is a total dead weight, she said, and is heavy.
Gary Marshall
Then Suzanne heard about a small airway suction device, which she said has been used successfully in Gary’s day habilitation program.
Called the LifeVac, it is meant to be placed over a choking victim’s mouth and nose while air is compressed out of it, causing a vacuum. If the LifeVac is used, the victim can remain seated in their wheelchair.
Suzanne contends there is a good chance the LifeVac, or another device of similar quality, could save her brother’s life if he were to experience another choking episode and all other measures had failed. In that case, the device would do no harm even if it was also unsuccessful.
Gary, who is 68, is intellectually disabled. He has a tendency to eat too quickly, which can cause choking problems. Due to a craniotomy for cancer and subsequent chemotherapy and radiation, Suzanne said, Gary has continued to decline both physically and intellectually. She said his tendency to choke is due both to dysphasia and his intellectual disability.
Suzanne first asked the manager of Gary’s group home, which is run by JRI, whether the staff could be trained to use the LifeVac as a last resort if existing protocols for helping Gary in a future choking episode were unsuccessful. But her request was denied by JRI, so she contacted the Department of Developmental Services (DDS), which funds the provider.
On June 4, Suzanne received a reply from Meghan Allen, the DDS ombudsperson, stating that the DDS area office and the medical staff were “unable to clear the usage of a non-FDA cleared device should your brother experience another choking event.”
Allen maintained that the device “is not in common use,” and contended that it “has the potential to evacuate air from the lungs and leave the object stuck in the airway. Upon your continued interest in using LifeVac,” Allen added, “the staff did outreach and research and could not find evidence that supports its use in this setting.”
But when Suzanne looked further into the issue, she said, she found studies had recommended the LifeVac. She also found out that the FDA doesn’t clear or approve Class II suction devices, which is how the LifeVac is classified. The FDA requires only that companies that make such devices register with the agency, which the LifeVac company has done.
But none of that has swayed either JRI or DDS. They have continued to deny the use of the device in the group home.
State legislator contacted
Suzanne tried turning to State Representative Michelle Ciccolo, whose district includes Lexington, where Gary’s group home is located. Ciccolo’s legislative aide did contact DDS. But Ciccolo was apparently satisfied with DDS’s position after hearing back from Allen.
I wrote to Ciccolo on June 20, rebutting the arguments put forward by Allen. I also wrote to Allen, similarly rebutting the arguments against using the LifeVac device.
Rebutting statements that the LifeVac is not in common use and allegedly leaves objects stuck in airway
In my messages to Ciccolo and Allen, I noted that with regard to the LifeVac’s usage, the company maintains that the device has been “reviewed, purchased, and implemented” in over 7,900 schools, 330 fire departments, 230 police departments, and 45 hospitals, as well as in “numerous Emergency Response Training Centers, disability facilities, eldercare homes, medical offices, dental practices, restaurants, corporations, and churches, (and) in over one million homes across the country.”
As noted, the LifeVac is used by Gary’s dayhab program. That is, in fact, how Suzanne found out about the device.
With regard to the claim that the LifeVac device leaves objects stuck in the airway, a peer reviewed study says the opposite. The study, published in The International Journal of Clinical Skills, specifically says objects getting stuck in the airway do not constitute a risk with the device.
The study noted that after the LifeVac’s face mask is applied, “a one-way valve on the plunger generates negative pressure. On downward thrust of the plunger, air is forced out the sides of the device and not into the victim. This,” the study said, “avoids the possibility of pushing an obstructing object further into the airway.”
While risks of the LifeVac can include edema and bruising from the generated suction, the study concluded that “the benefit of saving a life clearly outweighs these small risks.”
The study recommended that the LifeVac “be available for use in settings with high risk for choking such as nursing homes and day care centers, and possibly all public eating facilities.”
LifeVac operation instructional diagram
Several peer reviewed studies have been highly positive about the LifeVac
As noted, Allen had further had stated that DDS and medical staff had done research, but couldn’t find evidence supporting the LifeVac’s use.
Allen didn’t describe the research she was referring to. In my messages to Allen and Ciccolo, I noted that Suzanne had provided DDS with a list of eight peer-reviewed studies, which found the LifeVac device to be highly effective.
One of the studies, published by the Frontiers journal, described self-reported data regarding the use of the LifeVac device “in adult patients with oropharyngeal dysphagia during real-world choking emergencies recorded between January 2014 and July 2020.” According to the study:
Over a 6-year monitoring period, the (LifeVac) device has been reported to be successful in the resuscitation of 38 out of 39 patients with oropharyngeal dysphagia during choking emergencies…This portable, non-powered suction device may be useful in resuscitating patients with oropharyngeal dysphagia who are choking.
To be clear, Suzanne is not suggesting that the LifeVac device be authorized to replace existing choking protocols at the group home. As noted, she has asked that the device be used as a last resort should all existing protocols fail.
We hope DDS will take another look at Suzanne’s request with regard to this device. If used as a last resort, as intended, the device will do no harm.
At best, the LifeVac will, and has, saved lives. It makes no sense to us that DDS is unwilling to make it available at least for Gary, and potentially for all clients who are prone to choking.
Does DDS really not know how many vacancies there are in its state-run group homes?
Does the Department of Developmental Services really not keep track of vacancies in its network of state-operated group homes?
That’s the question we have been asking since DDS denied our Public Records request last month for information about the number of vacancies in the residences each year for the past two years.
Earlier this week, the state’s public records supervisor agreed to consider that question as well.
In its May 15 denial, DDS stated that it did not have documents showing the number of vacancies as of the dates we requested, which included the end of Fiscal Years 2022 and 2023, and the date on which we filed the request — April 24 of this year.
Does that mean DDS doesn’t have information on vacancies on other dates? The Department’s response didn’t say.
The DDS denial also stated that, “Vacancies are not tracked by the Department independently from the capacity and census data provided.” In our request, we had asked for information each year on the census (number of residents) and capacity (total number of available beds) in the group homes.
Does DDS’s response mean that the Department doesn’t track vacancies period, or just not “independently from the capacity and census data provided?”
On May 20, we appealed DDS’s response to Manza Arthur, the state’s public records supervisor, arguing that the DDS response was “confusing and ambiguous as to whether DDS actually tracks and has records concerning vacancies in its state-run group homes.”
As we noted, “It’s hard to believe that DDS would not know or keep track of whether vacancies exist in the group home system that it directly manages.”
We added that, “We regularly hear from family members who say they are told by DDS that there are no vacancies in state-operated or provider-operated group homes in specific areas of the state when they request such placements for their loved ones.” We asked how DDS officials “can truthfully say vacancies do not exist in given areas if they don’t know or keep track of that information.”
Public records supervisor initially denies our appeal, but then agrees to reconsider her decision
On June 4, Arthur issued a decision denying our appeal, without responding to or addressing our arguments. She stated only that in a telephone conversation with her office on May 23, “the Department confirmed that it does not possess additional records responsive to …(our) request.” She then stated that she considered our appeal closed.
On Monday (June 24), we asked that Arthur reconsider her decision, saying she had not assessed the merit of any of our assertions in our appeal. We requested that she provide at least some assessment of those assertions, particularly that the Department’s statement was ambiguous as to whether it possesses any information regarding vacancies in state-operated group homes.
I received a message on Monday afternoon from Arthur’s office, saying she had agreed to reconsider her initial decision, based on our objections, and that her new decision would be made in 15 business days, which would be by July 15.
DDS doesn’t inform clients or families about state-operated group homes or ICFs
We have contended for the past few years that there must be vacancies in state-run facilities, including the group homes, because the administration is not informing people seeking residential placements of the existence of those facilities.
As a result, the number of residents in the state-run facilities has been steadily declining. This has been true not only of the group homes, but of the state’s two remaining Intermediate Care Facilities (ICFs) — the Wrentham Developmental Center and the Hogan Regional Center.
In fact, data we did receive as part of DDS’s May 15 response to our Public Records request shows that as of April 24, the census in state-run group homes had dropped 18% from Fiscal Year 2015. As of April 24, the group home census was down to 986.
That decline in the state-run group home census can be compared to the growing census in the Department’s corporate-provider-run group home system, which reached more than 8,200 residents as of Fiscal 2021.
DDS data provided on May 15 also showed that the census at the Wrentham Center was 159 as of April 24. That was down from 323 in Fiscal 2013 – a 51% drop. The census at Hogan as of April 24 was 88. That was down from 159 in Fiscal 2011 – a 45% drop.
Seeking a clarifying statement from DDS
In her initial denial of our appeal regarding the vacancies, Arthur stated that under the Public Records Law, a public employee is not required to answer questions, do research, or create documents in response to questions. But she also stated that under the Law, custodians of records in state agencies are expected to “use their superior knowledge of the records in their custody to assist requestors in obtaining the desired information.”
We subsequently argued to her that it is not clear that DDS has used its superior knowledge of the records in this case to assist us in obtaining our desired information.
We requested that the public records supervisor order DDS to clarify whether it possesses any records that indicate whether vacancies in state-operated homes exist and the number of such vacancies.
It seems to us that DDS does not want to clarify this issue. If there is indeed a growing number of vacancies in state-operated group homes, then DDS would have to explain to clients and families why they are not offering those settings as an option.
It’s more convenient to keep records that might shed light on this issue private with carefully worded statements that appear to imply that the records don’t exist.
We are hopeful that in agreeing to reconsider her initial decision, the public records supervisor recognizes that DDS has an obligation to clarify the nature of the records it possesses, and therefore won’t be able to get away with clouding the issue.
Does the state commission on the history of institutional care have a private agenda?
A year into the operation of a state commission on the history of the former Fernald Developmental Center and other state institutions, the commission members apparently have yet to discuss that history.
As a result of that and other evidence, we are concerned that the commission’s real purpose may be something else entirely.
In fact, the evidence shows the commission may be poised to recommend the closure of the last two existing state-run congregate care facilities for persons with intellectual and developmental disabilities in Massachusetts — the Wrentham Developmental Center and Hogan Regional Center.
Our concern is based on online minutes and recorded Zoom meetings of the Special Commission on State Institutions since those meetings began in June 2023. It is also based on prejudicial statements made prior to the establishment of the commission by individuals later appointed to the commission and by organizations given appointing power to the commission.
The commission’s enabling statute states that the commission will “study and report on the history of state institutions for people with intellectual or developmental disabilities or mental health conditions in the commonwealth including, but not limited to, the Walter E. Fernald state school and the Metropolitan State hospital.”
However, a provision in the statute also states, in part, that that the commission’s work “may include recommendations for… deinstitutionalization…(and regarding) the independent living movement.”
Why would a commission established to study and report on the history of state institutions also be authorized to recommend deinstitutionalization — in other words, the closure of currently existing institutions?
The minutes and Zoom recordings of the commission’s meetings thus far indicate that the major subject that appears to have been off the table for discussion has been the history of the state institutions. There simply don’t appear to have been any discussions reflected in the minutes about that history, pro or con. Instead, the discussions have been about numerous peripheral issues.
Might that lack of discussion about institutional history mean the commission has already reached its conclusions?
The commission is required to submit a report to the Legislature with its findings and recommendations by June 1, 2025.
We have repeatedly expressed concern that the commission would examine only the history of the institutions prior to the 1980s when those facilities were notorious for abuse, neglect and poor conditions. We have contended the commission would likely ignore the history of the state institutions after significant improvements to them were made and overseen by a U.S. District Court judge in the 1980s.
We reviewed the minutes and Zoom recordings of the commission’s meetings, which have been posted on line. The meetings were held on June 1, September 6, and October 20, 2023, and on January 18 and March 21 of this year.
Among the additional evidence for our concerns are that:
- No clear direction thus far appears to have been publicly provided by the commission to its consultant, the Center for Developmental Disability Evaluation and Research (CDDER), regarding the scope of the commission’s inquiry. CDDER, which is part of the UMass Medical School, will apparently be charged with writing the commission’s report.
- There has thus far been no participation on the commission, as required, by a family member of a current resident of the Wrentham Center. That appears to be the only position on the commission that has gone unfilled to date.
A family member, who did initially agree to serve on the commission, said he was told by an administration official that he couldn’t continue to serve because he lives out of state. However, nothing in the commission’s enabling statute requires family members to live in Massachusetts in order to serve on the commission.
During the legislative process to create the commission, we argued for the inclusion on the commission of family members of current residents of both Wrentham and Hogan in order to help ensure that the commission will at least focus to some extent on the high level of care currently provided in those facilities.
According to the minutes, it was only in March of this year, nine months after the start of the commission meetings, that a family member of a current Hogan resident was apparently appointed.
- Four members of the 17-member commission include Healey administration officials or designees, and an additional seven members are appointees of the governor.
The administration has been blocking admissions to the Wrentham and Hogan Centers – a policy that is leading to a steady decline in the number of residents in those facilities. We are concerned that by the time the commission is scheduled to issue its report, the cost per resident at Wrentham and Hogan will have risen to a point at which the administration will begin making a case for the closure of the centers.
Wrentham and Hogan, the state’s two remaining Intermediate Care Facilities (ICFs), provide intensive residential services and are a critical backstop for care for some of the most severely intellectually disabled residents in the commonwealth.
We are concerned that the eventual closure of Wrentham and Hogan is being planned by the Healey administration. The administration and state Legislature, in contrast, have continued to increase the budgetary line item for community-based group homes to over $1.7 billion in the current fiscal year.
Commission members have made previous prejudicial statements
Proponents of the commission made statements prior to serving on the panel that were almost uniformly negative about care at the former Fernald Center, in particular. Those criticisms of Fernald were exclusively focused on the institution’s history prior to the 1980s, and never acknowledged improvements made at Fernald and other similar ICFs after that period.
For instance, several organizations, which were authorized under the commission’s enabling statute to appoint members to the commission, signed a petition and letter to Waltham Mayor Jeannette McCarthy in December 2021 opposing a Christmas light show on the Fernald grounds because Fernald had allegedly exclusively been a site of abuse and neglect. That petition, and one prior to it the previous year, stated that:
The use of this (Fernald) site (for a Christmas light show) is both disturbing and inappropriate, given its history of human rights abuses and experimentation on children. Hosting the Greater Boston Celebration of Lights here ignores the fact that the people who lived at the Fernald School were denied holidays with their families and loved ones for generations.
It appears the minds of the signers of that letter and petition had already been made up about Fernald before the commission was created. Neither the petition or letter noted the positive transformation of Fernald starting in the 1980s, nor the opposition of many families to Fernald’s closure in 2014.
Among the signers of the 2021 petition and letter to McCarthy were four organizations that were later given authorization under the enabling statute to appoint members to the commission – the Arc of Massachusetts, Mass. Advocates Standing Strong, Mass. Families Organizing for Change, and the Boston Center for Independent Living.
A member of a fifth organization, Kiva Centers, which also signed the petition and letter to McCarthy, is also serving on the commission, according to the minutes. Kiva Centers is not specified in the enabling statute as being authorized to appoint a member to the commission.
Alex Green, one of the principal backers of the commission’s enabling statute, started the petitions against Fernald and made numerous negative statements about Fernald, including writing a commentary in November 2020 that advocated deinstitutionalization. Green was appointed to the commission by the Arc of Massachusetts.
In his commentary, Green stated:
I have no doubt that a full reckoning with disability history would have led us to create a society better than this one, where the deaths of disabled Americans — who are often still forced to live in institutional settings — are as many as the anonymous ditches bulldozed for bodies (of persons who died during the COVID pandemic) on Hart Island in New York. (Link in the original.)
Enabling statute is vague about historical scope, but specifies deinstitutionalization and ‘the independent living movement’
The commission’s unclear focus appears to be at least partly due to the vagueness of the commission’s enabling statute, which was enacted as an amendment to the state’s Fiscal Year 2023 budget. A more carefully drafted bill, (H. 4961) which would have given COFAR an appointment to the commission, died in a legislative committee in July 2022.
As noted, the enabling statute states that the commission will “study and report on the history of state institutions for people with intellectual or developmental disabilities or mental health conditions in the commonwealth including, but not limited to, the Walter E. Fernald state school and the Metropolitan State hospital.”
The statute does specify that the commission will review records of former residents of the institutions, assess records of burial locations of those residents, and try to find unmarked graves of residents. But none of those requirements describes the nature of the history the commission will study or the purpose of such a study.
A final requirement in the statute states that the commission will:
…design a framework for public recognition of the commonwealth’s guardianship of residents with disabilities throughout history, which may include, but shall not be limited to, recommendations for memorialization and public education on the history and current state of the independent living movement, deinstitutionalization and the inclusion of people with disabilities. (my emphasis)
It’s not clear what, if anything, that provision in the statute has to do with the history of the state institutions. However, the provision does appear to allow the commission to recommend deinstitutionalization, which we think could mean closures of the Wrentham and Hogan Centers.
The provision also states that the commission may issue recommendations regarding the “independent living movement.” The independent living movement is not defined, but it appears to stand in opposition to congregate care in ICFs. As such, it appears to refer to “community-based” group homes or other community-based living arrangements such as staffed apartments or staffing in private homes.
While so-called community-based care works well for many high-functioning individuals, we have maintained that ICFs remain a critically important option for persons who cannot function in the community system.
Rejected bill contained independence clause and gave COFAR appointment
The previous bill, H. 4961, which had been reported favorably by the Mental Health and Substance Abuse Committee in July 2022, was also vague about how the commission would research and report on the history of the institutions. But it had a number of provisions that would have been helpful to the commission’s charge, but which were removed in the final, budget amendment version.
The rejected bill had stated that the commission would be “independent of supervision or control by any executive agency and shall provide objective perspectives on the matters before it.” That language was taken out of the final budget version.
Also, the rejected bill stated that the commission would “assess the quality of life” of residents currently living in state institutions, including Wrentham and Hogan, and would collect testimonials from current and former residents of state institutions, including Wrentham and Hogan, as part of a human rights report. That provision was also taken out of the final budget version.
Finally, the final version of the enabling statute removed a provision in H. 4961, which would have given COFAR the authority to appoint one person to the commission. The final version of the statute, however, kept that appointing authority for the Arc and the other anti-ICF organizations mentioned earlier.
Focus on issues irrelevant to the history of the institutions
As noted, the commission’s minutes don’t appear to contain any discussion about the actual history of the institutions. Instead, the commission’s discussions appear to have focused on such things as:
- The discovery, a decade after Fernald’s closure, of records of residents that were left behind in a state of disarray on the floors of abandoned buildings on the Fernald campus.
While this is a serious issue that needs to be investigated, it has nothing to do with the history of Fernald or the other institutions while they were in operation. The fact that the Fernald records breach has been the focus of discussion in at least two commission meetings may be an indication of the vagueness of the commission’s scope of inquiry as set out in the enabling statute.
- The hiring of CDDER as the commission’s consultant.
The first commission meeting, held on June 1, 2023, contained a preliminary discussion of a plan to hire a consultant to the commission for “staffing support,” and to use $145,000 in funding allocated to the commission for that purpose.
The commission’s second meeting on September 6 included a discussion of a recommendation that the commission hire CDDER as the consultant. It still wasn’t clear what the consultant was being hired to do.
In the third commission meeting on October 20, the commission voted to hire CDDER, with discussion that CDDER would likely be writing the commission’s report to the Legislature. It doesn’t appear that the commission considered any other consultants for the job.
- The creation of commission working groups for tasks including sending a letter of inquiry to Governor Healey about the records of residents of the state facilities and how to protect and access them; the status of burial locations of former residents; and “developing a framework for recognition” of former residents, including developing memorials.
No working group was established to develop the scope of the commission’s primary charge to study of the history of the institutions.
Family member of Wrentham resident told he could not serve
A family member of a Wrentham Center resident was actually recruited by the director of the Wrentham Center in December 2022 to serve on the commission.
That individual, who lives in Connecticut, said he had scheduling conflicts, but did attend a commission meeting in October 2023. But he said that shortly after that meeting, he was notified by an administration official that he was not eligible to continue to participate on the commission because he lives out of state.
Despite what that family member was apparently told, the commission’s enabling statute does not state that members of the commission must live in the state of Massachusetts. A Guide for Members of Boards and Commissions, published by the Inspector General’s Office, also does not state that living in Massachusetts is a requirement in general of such members.
Commission wasn’t established in good faith
In summary, we don’t believe this commission was established in good faith to study the full history of the state institutions.
The evidence for our conclusion includes the prejudicial statements made by some of the key commission members and organizations involved with the commission, and the language in the enabling statute that specifically says the commission may recommend deinstitutionalization.
Either this is a commission established to study the history of the institutions, or it is a commission established to recommend closure of existing institutions. It can’t and shouldn’t be both, but that is what the enabling statute appears to allow the commission to do.
In fact, the language in the enabling statute authorizing the commission to recommend deinstitutionalization is buried in a dense word salad that appears intended to hide that authorization.
Other evidence includes the enactment of the enabling statute as a budget amendment in an apparent end-run around the more carefully drafted legislation in 2022. As part of that end-run, COFAR’s appointment to the commission was rescinded.
The commission has subsequently failed to appoint a family member who might conceivably have good things to say about the current level of care at the Wrentham Center.
Finally, the evidence includes the lack of discussion in the commission meetings about what the commission is actually going to do. The actual discussions have focused on peripheral issues, including the breach in the storage of confidential records of former Fernald residents a decade or more after Fernald was closed.
All of this evidence may be circumstantial, but there’s an awful lot of it; and we just don’t think it’s all coincidental.
Boston 25 News reports on Healey administration’s denial of adequate care to severely disabled woman
Noting the state’s ongoing failure to provide adequate care to Kristen Robinson, a person with an intellectual disability, Boston 25 News is reporting that the Healey administration has continued to deny admission to Kristen to the Wrentham Developmental Center.
The television news station’s “25 Investigates” team interviewed Kristen’s sisters, Kim Meehan and Karen Brady, who said Kristen has been inappropriately confined for nearly two months in Faulkner Hospital in Boston.
Boston 25‘s report is a rare instance in which the media has reported on the difficulty many families are having in getting adequate care in the Department of Developmental Services (DDS) system, and in selecting state-run services, in particular.
DDS is refusing in most cases to allow admissions to either Wrentham or the Hogan Regional Center as alternatives to the state’s network of corporate, provider-run group homes for residential care. As Intermediate Care Facilities (ICFs), Wrentham and Hogan must meet strict federal standards for care and treatment.
As Kim stated in the Boston 25 report, DDS has responded with “a hard ‘no'” to the family’s request that Kristen be admitted to Wrentham.
As we reported last month, after initially promising on May 10 that she would admit Kristen for evaluation and rehabilitation to Wrentham’s May Center medical unit, DDS Commissioner Jane Ryder reneged on that promise just a few days later. This was despite the fact that Kristen is profoundly intellectually disabled, legally blind, and quadriplegic, and has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
DDS maintains it places individuals in the “least restrictive” settings, but the Department has been unable to find either a group home or a nursing home that can meet Kristen’s needs.
“Our sister deserves more than sitting in a hospital with sores on her arms from sitting in a wheelchair all day,” Kim told 25 Investigates. “She’s suffering.”
“She has no stimulation, hasn’t been with her day program, hasn’t seen her friends.” Karen added.
Kim maintained that at Wrentham, Kristen “would be safe. But DDS has given us a hard ‘no.'”
DDS told 25 Investigates that the Department is “guided by state and federal laws for least restrictive placements to move away from institutional care.” However, COFAR maintains that federal law actually requires that ICFs be offered as a choice to all persons whose intellectual disability makes them eligible for care under the Medicaid Home and Community-based Services (HCBS) waiver program.
We urge people to leave comments on the Boston 25 article, which is linked above.
Thank you.
Healey administration keeping wraps on policy that may involve future closure of the Wrentham Developmental Center
The Healey administration is developing a new policy regarding admissions to the Wrentham Developmental Center, according to a response by the Department of Developmental Services (DDS) to a Public Records request we filed last month.
But the administration is declining to release any details about that policy.
We are concerned that what appears to be the first change in policy regarding the Wrentham Center in recent years could involve or lead to the closure of the critically important Intermediate Care Facility (ICF).
On Tuesday, I sent an email query to DDS Commissioner Jane Ryder about the development of the new policy. I also emailed State Senator Robyn Kennedy and Representative Jay Livingstone, the co-chairs of the Legislature’s Children, Families, and Persons with Disabilities Committee, to ask whether they were aware of the policy change.
To date, I haven’t received a response from Ryder or from Kennedy or Livingstone.
On April 24, we submitted a Public Records request to both DDS and the Executive Office of Health and Human Services (EOHHS) seeking policies regarding admissions to the Wrentham Center and Hogan Regional Center, and admissions to DDS’s state-operated group homes.
We also asked for any projections or plans concerning the future census and closure of Wrentham, Hogan, or the state-operated homes.
In addition, we asked for records containing current data on the census or number of residents at Wrentham and Hogan, and data concerning both the census and number of vacancies in the state-operated group home system.
EOHHS stated that it had no records responsive to our request.
DDS responded last week with updated census numbers (see our discussion of that below). That response included a letter stating that the Department does have a “responsive record relating to admissions” at Wrentham.
But the letter said the Department was withholding that record from public disclosure because it is “a draft memorandum relating to policy development,” and is therefore exempt from disclosure under the state’s Public Records Law. The letter added that “…release of this record could taint the deliberative process if prematurely disclosed.”
The Public Records Law exempts from disclosure “inter-agency or intra-agency memoranda or letters relating to policy positions being developed by the agency…”
COFAR has filed Public Records requests with DDS for the past several years seeking records containing projections and plans concerning the future census and closure of Wrentham and Hogan and the state-operated group homes. In the past, DDS consistently stated that it had no such documents. This is the first time DDS has stated that it does have such a record.
New data show ICF census continuing to drop
Both the Wrentham and Hogan Centers provide a critical backstop for care for those persons with the most severe and profound levels of intellectual and developmental disabilities. And both centers meet strict ICF standards under the federal Medicaid law and regulations for care and staffing.
However, new data received last week from DDS under the Public Records request referred to above continue to show a decline in the census in both facilities. The data confirm that the administration is phasing out both the Wrentham and Hogan Centers.
The census at Wrentham as of April 24, the date of our Public Records request, was 159. That is down from 168 in the preceding fiscal year, and down from 323 in Fiscal 2013 – a 51% drop.
The census at Hogan as of April 24 was 88. That is down from 95 in the preceding fiscal year, and down from 159 in Fiscal 2011 – a 45% drop.
As the chart below containing the updated DDS numbers shows, the census in each facility has been dropping each year since Fiscal Year 2013 in Wrentham’s case, and since Fiscal Year 2011 in Hogan’s case.
Administration already appears to be excluding virtually all new admissions
We have reported on, and heard privately from several families that have been denied placements for their loved ones at Wrentham and Hogan. (See here and here.) The case of Kristen Robinson may be one of the most extreme examples of this.
Kristen, who is profoundly intellectually disabled, legally blind, and quadriplegic, has been confined to Faulkner Hospital in Boston for nearly two months following a choking incident in her family’s home in early April. Yet, DDS has continued to deny her family’s request that she be placed at the Wrentham Center.
In fact, DDS Commissioner Ryder had initially promised Kristen’s sisters on May 10 that Kristen would be at least temporarily placed at Wrentham for evaluation and rehab as of May 14. But the next day, Ryder rescinded that promise and claimed Kristen’s sisters had “misheard” her.
State-operated group home census continuing to drop
New DDS data in response to our Public Records request also continue to show a drop in the census of the DDS state-run group home network.
As of April 24, the census in state-run group homes was 986. That is down from 996 in the preceding fiscal year, and down from 1,206 in Fiscal 2015 – an 18% drop.
DDS also continuing to claim they don’t track vacancies in state-operated group homes
Despite the dropping census in the state-operated homes, the capacity or total number of available beds in those residences rose by 17 from the year before, according to the latest DDS data. “Capacity” is defined by DDS as the number of beds available in the state-operated group homes on a specific date.
According to the latest data from DDS, the capacity for state-operated group homes as of April 24 was 1,148. That is up from a capacity of 1,131 as of June 30, 2023. That is despite the fact that the census in the homes, as noted above, dropped by 10 residents from the preceding year. This implies a growing number of vacancies exists in those residences.
But DDS claimed in response to our April 24 Public Records request that it doesn’t track vacancy rates in state-operated group homes. The Department said it didn’t have any records showing state-operated group home vacancies as of June 30, 2022 or 2023, or as of April 24 of this year.
We have appealed to the state’s Public Records supervisor, arguing that we find it hard to believe that DDS would not know or keep track of vacancies in the group home system that it directly manages. We regularly hear from family members who say they are told by DDS that there are no vacancies in state-operated or provider-operated group homes in specific areas of the state when they request such placements for their loved ones.
We would ask how DDS officials can truthfully say vacancies do not exist in given areas if they don’t know or keep track of that information.
All of this new data reinforces our concern about the future of state-run care for people with intellectual and developmental disabilities in Massachusetts. The statement by DDS that it is developing a new policy regarding admissions to the Wrentham Center fuels that concern.
It’s unfortunate that this administration is not only continuing to pursue an ideology of privatization of human services in Massachusetts, but is unwilling to share information with the public about it.
The same goes for the co-chairs of the key committee that has primary jurisdiction over issues involving people with disabilities – the Children, Families, and Persons with Disabilities Committee.
After having met with us once last fall to discuss our concerns about the direction in which the administration is headed, the co-chairs also seem to have lost interest in communicating with us.
UPDATE: DDS Commissioner reneges on short-lived promise of temporary placement of severely disabled woman at Wrentham Center medical unit
On Friday afternoon, Kim Meehan and Karen Brady thought their prayers had been answered when Department of Developmental Services (DDS) Commissioner Jane Ryder called them and said she had decided to place their sister, Kristen Robinson, at the medical unit at the Wrentham Developmental Center.
Up to that moment, as we last reported, the Healey administration had been refusing a request by Kristen’s family to admit her to the state-run Wrentham Center even though state officials have been unable to find a suitable placement for her in any other residential setting.
For nearly two months, Kristen, who is profoundly intellectually disabled, legally blind, and quadriplegic, has been confined to Faulkner Hospital in Boston following a choking incident in her family’s home. She has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
Kristen Robinson (right) and her sister, Kim Meehan.
Then on Friday afternoon, after our last post ran, Kim and Karen, who are Kristen’s co-guardians, got that call from Ryder. According to Kim and Karen, Ryder said that while Kristen wouldn’t necessarily be accepted at Wrentham on a permanent basis, she would at least be evaluated at Wrentham’s May Center medical unit, and would receive rehab services for her medical conditions.
“We’re celebrating,” Kim told us on Saturday. “But there’s more work to be done,” she added, meaning she and Karen would continue to advocate for a permanent placement for Kristen at Wrentham, one of the state’s two remaining Intermediate Care Facilities (ICFs). The other such facility is the Hogan Regional Center in Danvers. ICFs must meet strict standards for care under the federal Medicaid Law.
Kim and Karen said Ryder told them the transfer from Faulkner Hospital to the May Center would take place by Tuesday of this week. They maintained it couldn’t come soon enough for Kristen, 50, given that Faulkner is not equipped to provide adequate care for her.
The hospital, Kim said, does not even have the ability to shower Kristen, and she consequently has rashes on her body. Kristen has received no intellectual stimulation at Faulkner, she added, and has become emotionally withdrawn there.
Promise of May Center placement then evaporates
But Ryder’s promise subsequently evaporated. Following Friday’s call, neither Kim nor Karen received any further word from Ryder nor anyone else at DDS through Tuesday of this week, even though they both left several phone and email messages with Ryder’s office that day and the day before.
Finally, on Wednesday afternoon, Ryder called them back. In that Wednesday phone call, Ryder now said she couldn’t admit Kristen to the May Center, Kim said. “She said she didn’t realize that the May Center only treats Wrentham (Center) residents, and they don’t take outside referrals.”
Kim said she doesn’t believe it is necessarily true that the May Center takes only Wrentham residents. In any case, she maintained, Ryder would certainly have the authority to override departmental policy and order Kristen’s admission there.
“We feel sick about what has been done to us,” Karen said on Wednesday. “Kristen is still in a hospital bed at the Faulkner. She should have been at the May Center by yesterday (Tuesday).”
Kim said that when she and Karen pushed back during the Wednesday phone call with Ryder and insisted that she had made a promise regarding Kristen, Ryder claimed that, “Karen and I must have misheard her. We didn’t mishear her. We were both there when she called the previous Friday along with one of Kristen’s caregivers. All three of us heard her.”
Ryder appears to offer Hogan or state-operated group home
Kim said that during the Wednesday call, Ryder told them Kristen could go to the Hogan Center for an evaluation and possible rehab, though she would not be admitted there; or she could go to a state-operated group home, which Ryder claimed was available in southeastern Massachusetts.
But Kim said Ryder would not tell them where the group home is located unless they agreed to accept it. Such an agreement, Kim said, would potentially involve waiving their right to an ICF such as Wrentham or Hogan.
Kim added that Ryder said the group home does not have rehab facilities, but that “they could try to get PT (physical therapy) and OT (occupational therapy) for her there.”
It’s not clear why the medical unit at Wrentham is only available to Wrentham Center residents while the Hogan medical unit apparently would be available to Kristen. Kim also noted that while the Wrentham Center would only be a short drive from her home in Norfolk, Hogan would require them to make a 3-hour round trip to visit Kristen.
Kim said Ryder’s tone during the Wednesday call was no longer as friendly as it had been the previous Friday. On Friday, Kim said, Ryder had told them the promised placement at the May Center “’will be your Mother’s Day gift,’” referring to their mother who had died last December after having taken care of Kristen all her life.
Kim said that after she and Karen continued to push back on Ryder’s subsequent withdrawal of that promise, Ryder said, “’I think we need to end this call,’” and hung up on them.
Administration appears to be phasing out ICF-level care
As we have reported, the administration has been allowing the census to drop at both the Wrentham and Hogan Centers.
We have long argued that the Wrentham and Hogan Centers provide a critical backstop for care for those persons with the most severe and profound levels of intellectual and developmental disabilities. But in an email to Kim and Karen last month, a DDS official stated that Kristen has “no right” to ICF care.
In our view, federal law and regulations do provide a right to ICF care to anyone who has been found to be eligible for that level of care, which is the case with Kristen.
Provider-run group home and nursing homes unable to accommodate Kristen
Thus far, DDS has been unable to find a residential facility, other than Wrentham or Hogan, that could accommodate Kristen. The only provider-run group home identified so far by DDS as a possible setting for Kristen rejected her placement there in March because the home cannot accommodate residents in wheelchairs. In addition, as many as 25 nursing homes have indicated they would be unable to accommodate Kristen.
Ryder’s initial promise on Friday to allow at least a temporary placement for Kristen at the May Center followed a phone conference on May 8 between Kim and Karen and officials with both DDS and the Executive Office of Health and Human Services (EOHHS) about possible placements for Kristen.
Kim said the EOHHS and DDS officials told them during the May 8 phone conference that they would have to continue to try to find a nursing home for Kristen.
Kim said, however, that as of last week, Faulkner Hospital had been unsuccessful in finding a nursing home that would take Kristen. At that point, over 20 nursing homes had said they couldn’t accommodate her.
As of May 8, two nursing homes apparently remained as possibilities. But Kim said that when they contacted both nursing homes at the suggestion of both DDS and EOHHS, the administrators there said they didn’t have staff available to provide the one-on-one care that Kristen needs.
Kim said that during the May 8 phone conference, she asked an ombudsman for DDS what the purpose is of an ICF such as Wrentham if DDS is so unwilling to allow admissions to it. She said the ombudsman replied that”‘an ICF is for people who have failed in most other places.'”
We hope the administration does not intend to force Kristen into the community-based system where they almost certainly will fail her.
It seemed briefly that Commissioner Ryder had finally made the right decision in promising to place Kristen at the May Center. But for reasons about which we can only speculate, Ryder has gone back on that promise.
Please let the co-chairs of the Legislature’s Children and Families Committee know about this case by emailing them and including the link to this latest post. Let them know that Kristen needs to be admitted A.S.A.P. to Wrentham.
The committee co-chairs are State Senator Robyn Kennedy (at Robyn.Kennedy@masenate.gov), and State Representative Jay Livingstone (at Jay.Livingstone@mahouse.gov).
Thanks!
Healey administration denies family’s request to place severely disabled woman at Wrentham Center
The Healey administration is refusing to admit a severely disabled woman to the state-run Wrentham Developmental Center even though state officials have been unable to find a suitable placement for her in any other residential setting.
As a result, Kristen Robinson, 50, who is profoundly intellectually disabled, blind, and quadriplegic, has been confined to Faulkner Hospital in Boston since early last month following a choking incident in her family’s home. She has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
Emails show that the Department of Developmental Services (DDS) denied a request by the hospital last month to discharge Kristen to the May Center, a medical unit at the Wrentham facility.
Kristen Robinson (right) and her sister, Kim Meehan
Kristen’s sisters and co-guardians, Kim Meehan and Karen Brady, want her to be admitted permanently to the Wrentham Center. They argue that Wrentham provides a higher and more comprehensive level of care than can be found in the DDS-funded, provider-based group home system.
Administration officials, however, have insisted that suitable settings for Kristen can be found in the group home system.
But the only group home identified so far by DDS as a possible setting for Kristen rejected her placement there in March because the home cannot accommodate residents in wheelchairs. In addition, as many as 25 nursing homes have indicated they would be unable to accommodate Kristen.
A clear case of need for an Intermediate Care Facility
Kristen had lived her entire life under her mother’s care in Walpole. But when their mother died last December, Kim and Karen and their husbands began to take turns caring for Kristen and staying overnight with her.
In a January 11 email to DDS Newton/South Norfolk Area Director Jane Fuller, Kim explained that her mother had died the previous month, and that Kristen needed a setting that would provide 24/7 nursing care due to her seizure and choking disorders. “Immediate help from DDS is necessary for Kristen’s safety and well being,” Kim wrote. “Please expedite the visit to WDC (the Wrentham Developmental Center)…”
Kim also said she and Karen are paying part of the cost of in-home care for Kristen out of pocket. She said that while Kristen needs 24/7 care, MassHealth is funding a maximum of only 10 hours a day of in-home services for her.
The Wrentham Developmental Center is an Intermediate Care Facility (ICF), which meets strict standards for care under the federal Medicaid Law. As we have reported, the administration has been allowing the census to drop at both the Wrentham Center and the Hogan Regional Center, the state’s only two remaining congregate ICFs.
A series of administrations has moved for decades to phase out state-run residential care for persons with intellectual and developmental disabilities (I/DD) in Massachusetts, and to replace it with contracted care in state-funded group homes. Nevertheless, we have long argued that the Wrentham and Hogan Centers provide a critical backstop for care for those persons with the most severe and profound levels of I/DD.
In an email last month, Fuller stated to Kim Meehan and Karen Brady that Kristen has “no right” to ICF care.
In our view, however, federal law and regulations do provide a right to ICF care to anyone who has been found to be eligible for that level of care, which is the case with Kristen.
Kim said the administration “is completely blocking Kristen’s right of choice of either an ICF or a community-based setting. DDS has given us no options for care in any setting,” she added.
Kristen’s case appears to be a clear case of the current administration’s improper refusal to offer an ICF placement to an individual who needs that level of care. It raises the question whether the administration has any consistent standard for admissions to ICF-level facilities.
Group home identified by DDS would not accept Kristen
Kim said that earlier this year, DDS began to look for a possible community-based placement for Kristen.
In March, DDS had identified a group home in Millis, operated by BAMSI, a DDS provider. But Kim said that when she, Karen, and an aide to her local state legislator, Representative John Rogers, arrived at the home with Kristen on March 20, the group home’s nurse said the residence couldn’t accommodate Kristen because she was in a wheelchair. The nurse said DDS had not informed her that Kristen was in a wheelchair and is quadriplegic.
Since then, Kim said, DDS has not identified any other potentially suitable group homes for Kristen. Since last month, she said, Faulkner Hospital has contacted as many as 25 nursing homes as possible placements for Kristen. None of those nursing facilities have apparently been able to accommodate her either. All have rejected her admission.
Ironically, the Healey administration recently promised to move 2,400 disabled persons out of nursing homes to settle a lawsuit alleging that those individuals had been improperly placed in nursing homes. That case follows the historic Rolland v. Cellucci lawsuit, which similarly resulted in the discharge of persons with I/DD from nursing homes in Massachusetts.
State officials suggested lowering bed to the floor
Kim said that despite Kristen’s limited ability to move, she can roll over and fall out of most nursing home beds. Nursing homes, in fact, are largely prohibited from using beds with side rails. That is one of many reasons, Kim maintained, that nursing homes are not appropriate settings for persons like Kristen with I/DD.
Yet, Healey administration officials are apparently not ruling nursing homes out in Kristen’s case. Kim said that in a meeting she had with ombudsmen from both DDS and the Executive Office of Health and Human Services (EOHHS), one state official suggested lowering Kristen’s bed to the floor, and placing mats nearby.
Kim said one of the many problems with that suggestion is that Kristen has pica, an eating disorder in which she will eat non-food items. “She will eat anything on the floor,” she said.
“Think about a 10-week-old,” Kim wrote to us in an email. “How they behave; what they are capable of. That is Kristen! I’m fighting hard with everything I have! I do not understand how my sister can be treated like this as a disabled person!”
DDS official claims, “No one has a ‘right’ to an ICF”
In a March 20 email to Kim, the same day that the BAMSI nurse stated that the Millis home couldn’t accommodate Kristen, Fuller first stated that, “No one has a “right” to an ICF.” She then asserted, directly after that statement, that, “DDS does not force anyone to accept services.”
It’s not clear what Fuller meant by the second statement, other than possibly implying that Kim and Karen would have to accept DDS’s position against ICF care if they wanted services at all for their sister.
DDS statement ignores federal law and regulations
In our view, Fuller’s claim that no one has a right to ICF care does not comply with the federal Medicaid law and regulations. Those rules require that ICFs be offered as a choice to all persons whose intellectual disability makes them eligible for care under the Medicaid Home and Community-based Services (HCBS) waiver program.
The HCBS waiver was established to allow states to develop group homes as alternatives to institutional care. However, the Medicaid statute did not seek to abolish institutional or ICF care. Such care must remain as an option as long as states such as Massachusetts receive federal Medicaid reimbursement for operating ICFs.
The Medicaid statute states that if a state does include ICFs in its “Medicaid State Plan,” as Massachusetts does, the state must provide that:
…all individuals wishing to make application for medical assistance under the (state) plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. [42 U.S.C. § 1396a(a)(8)]
There is nothing in the Medicaid statute that exempts states from offering an ICF as an option in response to an application for that form of medical assistance. Persons who are found to be eligible for HCBS waiver care, as Kristen was, have been found to meet the eligibility requirements for ICF-level care.
Moreover, federal Medicaid regulations state explicitly that individuals seeking care, and their families and guardians, should be “given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)] (My emphasis.)
DDS official makes inaccurate claims about ICF closures
In an April 19 email to Karen and others in the case, Fuller made a number of additional statements, which we believe are inaccurate, to support the DDS position that the Wrentham Center is not open to new admissions. She stated in the email that:
As to the question of admission to the Wrentham Developmental Center, admissions to all institutional care facilities were closed with the settlement of the RICCI class action lawsuit. Many of the facilities are completely closed. The last one to close was the Fernald Center in Waltham. From the settlement agreement, DDS is to provide the least restrictive community setting options for people who are determined eligible for DDS.
In our view, this statement is largely untrue. Fuller referred in it to the Ricci v. Okin class action lawsuit, which was filed in the 1970s in Massachusetts in response to poor care and conditions in what were then referred to as “state schools” for persons with I/DD, including the Wrentham and former Fernald Centers.
The Ricci case was never “settled.” It was turned into a federal consent decree, which actually resulted in upgrades at the then existing developmental centers in the 1980s.
Moreover, the Ricci case itself didn’t result in the closures of any of the developmental centers. Fernald and a number of other developmental centers were closed as a result of policies instituted by a succession of Massachusetts governors from the 1990s onward.
Many Fernald clients were actually transferred, based on requests by their families or guardians, to the Wrentham Center, which continued to admit a handful of new clients in recent years.
Our Public Records Request
Given the concerns this case raises for us regarding the apparent lack of standard criteria for admissions to the Wrentham and Hogan Centers, we filed a Public Records Request on April 24 with both DDS and EOHHS, asking for their written policies concerning admissions to Wrentham, Hogan, and state-operated group homes in Massachusetts.
On May 7, EOHHS stated that that agency did not have any records responsive to our request. DDS stated that it needed an additional week — until May 15– to provide us with a response.
If the administration does not consider someone with Kristen’s functional limitations and medical problems a suitable candidate for the Wrentham Center, we fear it may spell the beginning of the end for ICFs in Massachusetts. Wrentham and Hogan are critically important pieces of the fabric of care for some of the most vulnerable persons in this state.
We hope our state legislators will get involved to put pressure on the administration to follow the law, and to recognize the needs and desires of Kristen, her family, and many others like them who are similarly seeking residential placements at Wrentham, Hogan, and other state-run facilities.
COFAR blog 