Globe update report has devastating findings about DDS provider-run group home system. Is the administration listening?
In the second of two reports on the corporate, provider-based group home system in Massachusetts, The Boston Globe last week characterized the system as “hobbled by poor staffing and struggling with allegations of abuse and neglect.”
Last week’s article was a follow-up to a report in September by the Globe’s Spotlight Team, which had focused on widespread abuse and neglect in provider-run residential schools for children and teens with autism.
We think the Globe’s reporting raises some important questions, one of which is whether the Healey administration and the Legislature are listening.
The Globe’s reporting echoes assertions about abuse and neglect in the system that we have been making for years. Moreover, we think the Globe is on the right track in noting a key factor plaguing the system, which we have long emphasized, of underpaid and undertrained staff.
Last week’s Globe article stated that most of the parents of autistic children whom the paper had interviewed asserted that, “Massachusetts has never solved long-term systemic problems of low pay and inadequate training” in the system.
The paper noted that although “the state has directed millions of dollars to group home providers to help them recruit and keep staff, pay remains similar to that of some retail and fast food workers; $17 to $20 an hour is typical.”
The Globe further stated that “a number of parents who spoke with (the newspaper) requested anonymity because they were afraid that (as we have long reported) state officials or providers would retaliate against them or their child if they spoke out.”
Paper needs to examine the causes
We hope the Globe will investigate the causes of that culture of retaliation and intimidation of families who complain about inadequate care and even abuse and neglect of their loved ones; and that it will investigate the causes of the underpayment of staff.
Understanding the causes of the underpayment of staff might help explain where the millions of taxpayer dollars went, given the money, as the Globe implied, doesn’t appear to have been used to raise staff wages to any significant degree. It might also explain why direct-care workers in the provider system have historically been underpaid and undertrained.
We think an investigation of the causes will reveal that the corporate provider system has always been been about making as much money as possible for its executives while paying its direct care workers as little as possible. That appears to explain why the privatization of human services has never met the promise of both delivering high-quality care and saving money. It may also explain why continual efforts to raise the pay of direct care workers don’t seem to lead to that result (see Massachusetts Inspector General’s 2021 Annual Report, page 27).
State-run services ignored as potential solution
Last week’s Globe article referred to concerns raised by the Arc of Massachusetts and the Massachusetts Association of Developmental Disabilities Providers (ADDP) — both of which actually lobby for the providers — about the shortage of staff and a lack of available group homes.
But while organizations like the Arc and the ADDP publicly decry the poor care and abuse of clients and the underpayment and shortage of staff, they both oppose a key potential solution to the problem, which would be to open the doors of the Wrentham and Hogan Developmental Centers and provide state-operated group homes as options to individuals seeking residential placements.
The state-run Wrentham and Hogan Centers and state-operated group homes have better trained and better paid staff than the provider-run homes. Yet the state-run facilities are losing population even as the number of people waiting for placements is growing. That is because the administration is not offering state-run facilities as options to people seeking placements, and is even denying requests made by families to place their loved ones in them.
The Arc and the ADDP appear to offer no solutions to those problems other than to ask the state to direct more money to them. In our view, those problems will never be solved unless the state changes the incentives driving privatized care.
Real oversight needed
In addition to providing families with state-run facilities as options for residential care, the state needs to take steps to ensure that group home providers really do raise the pay of their direct-care workers. It could begin to do that by establishing true financial oversight of the provider system. Currently, that oversight is practically non-existent.
Successive administrations and the Legislature have been committed to the privatization of DDS care for decades. They have maintained an extraordinarily close relationship with the corporate provider system in that respect. As noted, the Globe pointed out that both DDS and the providers often retaliate against parents and family members who dare to complain about poor care in the group homes.
We hope the Healey administration will not allow the anti-family culture and the continuing underpayment of direct-care staff in the DDS provider system to continue. We also hope the administration will consider reversing the longstanding administration policy of allowing state-run residential facilities to die by attrition.
The breakdown of the DDS system caused by decades of runaway privatization and mismanagement is finally being reported by the Globe. We hope the Healey administration is listening.
Applicants waiting for months to be found eligible for DDS services due to psychologist shortage
While thousands of persons with developmental disabilities reportedly have to wait months or years for residential and other services from the Department of Developmental Services (DDS), internal departmental emails indicate that hundreds of individuals are also first being forced to wait for up to a year or more just to be ruled eligible for those services.
The emails, which were obtained by COFAR under a Public Records Law request, confirm that DDS is dealing with a backlog of eligibility applications due to a shortage of psychologists who are needed to make eligibility determinations on an individual basis.
One of the more severe backlogs apparently afflicted the DDS Metro Region, which had a backlog as high as 380 in unprocessed applications in recent months, although that backlog was projected to be reduced to 80. One unnamed region had a backlog as of this past September of nearly 600 applications.
Under DDS regulations, the Department must determine eligibility for supports and services within 60 days; but the process has taken more than a year in some cases, according to the internal emails.
The emails, which were provided on November 21, and documents previously provided on October 18, show that DDS had been dealing with the backlog problem at least as far back as January 2021. Also, as we reported, based on the first set of documents, DDS was the focus of a federal investigation of an inordinate delay in processing at least one application.
Lack of coordination in dealing with the backlog
The internal emails also indicate there has been a lack of coordination among DDS regions in responding to the backlog problem, and that some regions have experienced more severe backlogs than others.
The emails further suggest that there had been no statewide meeting among DDS regions to discuss the backlog problem until this past September. Discussions about the backlog issue appear to have largely been held within or between individual regions.
In one case, the director of the Northeast Region emailed the Central West and Southeast regional directors in September to ask if either or both of them could help with the Northeast Region’s backlog.
OCR investigation of complaint based on eligibility delay
The federal Office for Civil Rights (OCR) with the U.S. Department of Health and Human Services investigated at least one complaint that an inordinately long delay by DDS during the past two years in processing an application for services amounted to discrimination against the applicant.
It took more than a year for DDS to determine that the applicant was, in fact, not eligible for DDS services. Under the Department’s regulations, eligibility determinations should take no longer than 60 days.
The OCR ultimately determined that DDS had not discriminated against the applicant. However, the federal agency noted that DDS had acknowledged that the delay in processing the application was due to “limited clinical resources.”
According to the OCR report, DDS also stated that, “the departure of a full-time RET (Regional Eligibility Team) psychologist in June 2021 affected the turnaround for reviewing applications.” Under DDS regulations, the Regional Eligibility Teams consist at least one licensed doctoral level psychologist, an individual with a master’s degree in social work, and a Department eligibility specialist.
Backlog issue dates back at least to January 2021
According to the OCR report, the complainant alleged that the DDS Regional Eligibility Team had received their application for adult Community Developmental Disability (CDD) supports in January 2021. But it wasn’t until February 2022, or more than a year later, that the applicant was evaluated for his or her eligibility.
The emails COFAR received from DDS were dated from July 2022 through this past October. One of the email threads indicated that an applicant for services had been waiting without a determination from September 2021 through July 2022. A July 20, 2022 email in that thread, apparently between employees of the DDS Southeast regional office, stated that the individual had applied for services 10 months previously and had “not heard anything since then.”
In an email in the thread, Tracey Daigneau, who is listed as eligibility coordinator for the Southeast Region, stated that the individual’s application “was forwarded for a determination in late December (2021). Due to the high volume of applications and the fact that our full-time psychologist position was vacant for six months, we have a backlog that we are just now catching up from,” Daigneau stated.
One region had a backlog of almost 600 as of this past September
As recently as this past September, one DDS regional office was reporting a backlog of 590 applications awaiting determinations by an eligibility psychologist, according to a September 20 email.
The email was sent to Michelle Harris, a deputy assistant DDS commissioner. The name of the sender of the email was redacted in the document provided to COFAR, so we were unable to determine the region which the backlog concerned.
Harris responded the same day to the sender, saying, “Whoa! – We have a part-time psych starting next week and as soon as we have her up and running we will be able to float her over to help you out.” Harris also stated that DDS had “started the process to hire a second part-time psych and we will again float her over to help you out while you search to fill your position. Thanks for the numbers!”
Metro Region projected backlog reduction
In emails on September 25 and 26, an eligibility coordinator for the Metro Region stated that an increased pace in completing eligibility determinations by three psychologists working in that region was projected to reduce the region’s backlog from 382 to 80. Another regional official referred to the projection as “fabulous news.”
But that good news hasn’t been uniform throughout the various regions.
Northeast Region case
In the Northeast Region, an applicant emailed a DDS eligibility coordinator on April 6 of this year, stating that “we have been waiting for a response regarding DDS application for almost a year now. I’m just trying to get any update regarding application and to see if there is anything more I need to do.” The applicant’s name was redacted.
On April 10, the applicant received a reply, stating that, “our psychologists remain significantly backlogged at this time and I don’t anticipate an eligibility determination until sometime later this month. We apologize for the delay and appreciate your patience.”
Help sought from two other regions
In September, Kelly Lawless, the Northeast regional director, emailed the directors of two other regions, stating that the Northeast Region had a “10-12 month backlog and a vacancy for our psychologist yet again.”
In her email, Lawless asked the two other directors, “Do you have a backlog in your determinations? Any chance you have any capacity to help out the NE region?”
The following day, one of those directors, Anthony Keane, the Central West regional director, emailed a member of his staff to ask, “is there any bandwidth to assist (the Northeast Regional Office)?
Keane’s staff member emailed back on September 29 to ask what the scope was of the Northeast Region’s backlog problem, and said he did know it had been “a long-term issue.” The staff member wrote that while there was no backlog in making eligibility determinations in the Central West Office, there was still a delay “at the front end regarding receiving applications.”
As of October 6, Keane’s staff member stated that a psychologist who was working for the Central West region had stated that she would provide assistance to the Northeast region.
Perceived lack of coordinated response among regions
Despite the communications among regions, departmental emails in September implied that there was a perceived lack of coordination from the DDS Central Office in addressing the backlogs.
In one email, dated September 18, an official in the Metro Region stated to Lawless that following a meeting the previous week with Harris, the DDS deputy assistant commissioner, “the regions were asked to provide numbers about the backlog of applications. There was very little context about what was prompting this.” The official suggested a need for “common definitions across the regions.”
Lawless, who was then also the Metro Region interim director, responded to the regional official, stating that, “There is a plan to have a statewide meeting with key people around eligibility and ways to address some of the challenges.”
There was also confusion over a plan to enlist the UMass Medical School’s Center for Developmental Disabilities Evaluation & Research (CDDER) in addressing the backlog problem. On September 20, an official, whose name was redacted, emailed Harris to ask whether there was going to be a “‘restructuring’ or ‘reorganization’ of eligibility,” and adding, “We will need to jump on rumors and reassure staff to prevent any further loss of staff or loss of morale, or in the case of rumors being true, assist in transition to new roles.”
Harris responded, saying, “Not sure what the rumors are but no one needs to jump ship. Our new psychs are not from DDS and we can kill two birds with one stone – you can help get them experience for me and they can knock down your waitlist as they gain experience.”
DDS meanwhile stated in its November 21 response to our Public Records request that the Department was not under any legal obligation under the Public Records Law to respond to our questions about the documents.
As we stated in early November, the documents we had received in October implied a growing dysfunction within DDS in carrying out its mission of caring for the most vulnerable members of our society.
The second set of emails shows that DDS has taken measures to respond to the backlog problem, but the records do not provide much assurance that the Department has gotten a grip on the problem.
Regions appear to have largely been dealing independently with the situation. Employee morale has reportedly suffered, and, most importantly, clients and their families have been left, as usual, to wait for answers and for services.
Supported Decision Making bills would impose an additional burden in court on persons seeking to become guardians
A little-known provision in proposed Supported Decision Making (SDM) legislation would impose an additional burden of proof on persons petitioning in probate court to become guardians of their loved ones with intellectual or developmental disabilities (I/DD) in Massachusetts.
That is one of several concerns that COFAR has raised with two committees in the state Legislature that are considering bills to authorize SDM as a potential replacement for guardianships.
Two nearly identical SDM bills have been filed in the House and a third in the Senate this year (H.201, H.1485, and S.109). As we reported, the House bills were mistakenly referred to separate legislative committees – the Children, Families, and Persons with Disabilities Committee and the Judiciary Committee.
We have contacted both committees to suggest changes to the bills, and to urge that both committees consider a single bill rather than separate bills.
SDM involves enacting written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. We have long raised concerns that while SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.
Additional burden of proof
One of our key concerns about the SDM bills is that while proponents of the legislation tout SDM as an informal process that doesn’t require persons to go to court to enact SDM agreements, the legislation would actually increase the burden in court on those seeking to become guardians.
A little-discussed provision in each of the bills states that in applying or petitioning for guardianship in probate court, persons must state whether they have considered SDM as an “alternative to guardianship,” and why SDM would not be “feasible… or would not avoid the need for guardianship.”
We advise families that guardianship is vitally important in advocating effectively for loved ones with cognitive disabilities that are severe enough to prevent them from fully appreciating the decisions that they make. Without guardianship, family members often find they have little say over the care and services of their loved ones.
The provision in the SDM legislation requiring petitioners for guardianship to demonstrate why SDM is not feasible or not superior to guardianship is, we think, the most radical aspect of the proposed legislation, and is one that we are strongly urging each committee to remove from the bills.
We think the provision would predispose probate court judges to deny guardianship petitions unless the petitioner can meet a higher burden of proof than is now required that a guardianship is appropriate. That burden is considerable.
Currently, when someone files a guardianship petition, the petition must be accompanied by a Clinical Team Report dated within the previous 180 days. The clinical team must consist of a physician, a licensed psychologist and a social worker.
The petitioner must also explain why more limited forms of guardianship, such as a conservator to manage financial affairs only, is not appropriate, and why a full guardianship is necessary. The proposed SDM legislation would add consideration of the appropriateness of SDM to that burden of proof.
At the same time, the legislation would not require an individual to go to court to establish an SDM agreement. That latter factor is often cited by SDM proponents as an advantage in SDM arrangements.
But what the SDM proponents don’t mention is that the legislation still brings the probate court into the picture – only it does so in order to increase the burden on petitioners for guardianship. That provision, in our view, shows that the real purpose of the SDM legislation appears to be to bring about an end to guardianship in Massachusetts.
Additional safeguards needed
We are also asking both the Children and Families and Judiciary Committees to consider adding the following safeguards to the SDM bills:
- A specified standard for the level of functioning and decision-making capacity of the individual, below which an SDM arrangement would not be considered feasible.
As was the case with previous versions of the SDM legislation, the three bills this year define the “decision-maker” in an SDM agreement as “an adult who seeks to execute, or has executed, a supported decision making agreement with one or more supporters…”
There is no further specification about the decision maker in the bills. There is no differentiation in the definition between individuals with greater or lesser degrees of intellectual disability, and no consideration whether persons with low levels of cognitive functioning are really capable of making and appreciating life-altering decisions.
- A provision prohibiting employees of corporate residential and other providers from serving as members of an individual’s SDM team if those companies are also providing services to the individual.
Members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide. The pending bills do not require any separation between provider employees and other individuals on the SDM team. Providers could serve in both capacities.
- Clarification of a statement in the Senate SDM bill (S.109) that, “Evidence of undue influence or coercion in the creation or signing of a supported decision-making agreement shall render the supported decision-making agreement invalid.”
We think the legislation should state which individual or entity would make the decision to render the SDM agreement invalid in that case.
- A change in the wording in each of the bills of the following language from “may” to “shall”:
…the DPPC (Disabled Persons Protection Commission) and DDS (Department of Developmental Services) may petition the probate court to revoke or suspend a SDM agreement on the grounds of abuse, neglect or exploitation by supporters.
- A provision establishing a dispute resolution process involving SDM agreements, and specification of a funding source for implementing SDM.
A Syracuse Law Review article stated that one of the lessons of SDM pilot projects in Massachusetts and elsewhere was that a dedicated funding source is needed to implement SDM for a large number of individuals. But there is no reference in the pending bills to a funding source for SDM in Massachusetts.
The Syracuse Law Review article also stated that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a two-day training session for SDM mediators. But while the SDM bills in Massachusetts would require the state to establish an SDM training program, none of the bills specify a dispute resolution process for SDM arrangements or training in dispute resolution.
We hope that both legislative committees consider these concerns carefully. While the proponents of SDM may have good intentions, the devil is in the details.
Regardless of what the SDM proponents are telling the lawmakers, those lawmakers need to understand that this legislation, as currently written, will have far-reaching and long-term consequences; and we don’t think those consequences would be good for families and guardians of persons with I/DD.
Filing of separate, identical bills authorizing Supported Decision Making could prevent lawmakers from addressing problems with the legislation
In an admittedly mistaken parliamentary decision, the state Legislature’s House clerk earlier this year referred two virtually identical House bills that would authorize Supported Decision Making (SDM) in Massachusetts to two separate legislative committees.
The filing and referrals of these bills are raising a concern for us that problems we have cited with the legislation may not be addressed in the possible confusion over the measures. (We will discuss our proposed safeguards for the legislation in an upcoming post.)
SDM involves enacting written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors. We have long raised concerns that while SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.
It isn’t clear why two separate and nearly identical SDM-authorization bills were introduced in the House this year. We think it is likely that proponents of SDM asked legislators to file both measures in order to increase the chances of passage of the legislation.
However, the referrals of the two bills to separate committees appear to violate a provision in the Legislature’s Joint Rules, which states that “each matter shall be referred only to one joint committee for consideration …(and) The committee to which a matter is initially referred may discharge the matter to another committee with jurisdiction over the matter.”
House clerk says double referral was a ‘mistake’
In an interview last week with COFAR, House Clerk Steven James acknowledged that the double referral was a “mistake and an inconsistency.” A single bill should have gone to one committee from which it could then be sent or discharged to the other committee, he said.
James referred both bills on the same day – February 16 – to the separate committees. One of the bills (H.201) was referred to the Children, Families, and Persons with Disabilities Committee, and the other (H.1485) to the Judiciary Committee. The separate bills are still before those committees.
James said he thinks the mistake may have occurred because each House bill has a slightly different title, and his office’s computer may therefore have identified the bills as separate pieces of legislation.
James said that “the remedy is to get one of the committees to discharge its bill to the other committee.” He said he thought the Judiciary Committee, in particular, should discharge H.1485 to the Children and Families Committee because that committee considered a similar bill last year, and H.201 is a refile of that bill.
In fact, there is even a third identical SDM bill (S.109), which was also filed this year. But that measure was referred by the Senate clerk on the same day as H.201 was to the Children and Families Committee. As a result, we think those two bills are likely to be merged by the committee into one bill if the committee does report favorably on the legislation.
A staff person with the Children and Families Committee said that both that committee and the Judiciary Committee are “coordinating our efforts” on the two House bills. However, the staff person did not say either committee would discharge their bill to the other.
Judiciary Committee staff did not respond to an inquiry by COFAR about the matter.
Previously another Children and Families Committee staff person had said that both committees had “decided to proceed and evaluate the bills separately.”
If so, it is concerning that the Children and Families Committee, which has jurisdiction over disabilities issues, might then have no input in the disposition of H.1485, which would potentially have a substantial impact on the way services are delivered to persons with I/DD.
Similarly, the Judiciary Committee, which has jurisdiction over judicial issues, might have no input in the disposition of H.201, which would potentially have a substantial impact on the way probate courts decide applications for guardianship of persons with I/DD.
Last year, an SDM bill, which was refiled this year as H.201, came close to passage in the Legislature. It passed the Senate in November 2022, and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to the House after we identified problems with the legislation.
It is clear that proponents of SDM are intent on using every possible parliamentary method they can find of gaining passage of this legislation — possibly even methods that violate legislative rules. It would be nice if they showed a similar interest in improving the legislation.
Real Lives Law in Massachusetts falls short of expectations
Nearly 10 years ago, Person-Centered Planning (PCP) was officially authorized in Massachusetts by the Real Lives Law amid the promise that it would transform the way services for persons with intellectual and developmental disabilities (I/DD) were delivered.
PCP, also known as Self-Directed Services or Self-Determination, would give those individuals and their families control over their services. No longer would they be restricted to the so-called traditional services that the Department of Developmental Services (DDS) funds in group homes, larger facilities, and day programs.
Under the Real Lives Law, DDS clients themselves would be provided with funding and individual budgets, and would be free to design their own services and tailor those services to their own needs.
But today, it appears that the promise of PCP has largely been unrealized. As we discuss below, even key PCP supporters acknowledge that funding for PCP has been inadequate, and that DDS has been inconsistent and nontransparent in the way it administers the program.
Moreover, while the Real Lives Law was enacted in 2014 to authorize and promote PCP, DDS hasn’t even promulgated regulations to date to implement the law. This has left countless families and advocates frustrated because the lack of regulations has weakened the law’s potential impact.
COFAR anticipated the problems with Self-Directed Services
Back in 2014, COFAR anticipated many of the problems that Self-Directed Services in Massachusetts is now experiencing, particularly the problems people are having in developing individual budgets. We also expressed concern at the time that the Real Lives Law was written in such a way as to marginalize families and leave persons with I/DD vulnerable to exploitation.
Many of our concerns about the Real Lives Law are similar to concerns we are now raising about Supported Decision Making (SDM), which is a pending initiative in the Legislature that has many of the same goals as PCP.
In our view, the real purpose of PCP and SDM appears to be to save money on residential placements in group homes, and to curb the authority of guardians and family members to make decisions for their loved ones who are unable to make those decisions.
If DDS were serious about giving individuals true choice in designing their own services, the Department would not deny the choice of residential placements at the Wrentham Developmental Center and in state-operated group homes to many individuals and families, as it is now doing.
No dedicated funding and inconsistent rules regarding budgets
The Real Lives Law defines “Self-Determination” as “an approach to service delivery in which the participant is given control over the decision-making process for the participant’s supports or services and budget, and the participant may tailor the support to meet the participant’s needs.”
The law states that DDS must set individual budgets annually in a “fair, equitable and transparent manner.” And it states that the value of a participant’s individual budget should be “equivalent” to the amount the Department would have spent for that individual under the “traditional service model.”
But in both a DDS public hearing a year ago and an online meeting hosted last week by the Arc of Massachusetts, the latter of which I attended, advocates and family members expressed frustration that those statutory requirements are not being met by DDS. They maintained that the Department’s allocated budgets for PCP are not adequate.
Rick Glassman, director of advocacy at the federally funded Disability Law Center, testified in the November 2022 DDS public hearing that people engaging in Self-Directed Services are not getting a “proportionate amount” of funding from DDS relative to those receiving traditional services.
Glassman also maintained that the Department’s “methodology” for calculating self-directed budgets lacks transparency and consistency. “I think that’s problematic because legal rights affecting individuals are at stake,” he said.
DDS-funded research group decries lack of funding and budget standards
Even a DDS-funded policy analysis organization, the Human Services Research Institute (HSRI), stated in a report in 2018, more than five years ago, that Self-Directed Services in Massachusetts lacked “dedicated funding,” and that “many individuals and families reported a lack of familiarity with their budget amounts.”
The HSRI report added that there was “no standard parameter that links functional levels (of individuals) with individual budget amounts.” The report recommended that DDS consider asking the Legislature to create “a line item in the DDS budget for self-direction.”
It doesn’t appear, however, that DDS has subsequently proposed the creation of such a line item.
Law mistakenly labels the client as the “decision-maker”
Both Self-Determination, as envisioned in the Real Lives Law, and SDM use similar terminology in labeling individuals with I/DD as either the sole or central decision maker in determining which supports they will receive and in making other life decisions. While assigning the role of decision-maker to high-functioning individuals may be appropriate, we are concerned that it may leave low functioning persons vulnerable to exploitation.
As a 2013 article on SDM in the Penn State Law Review stated,
…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes. (my emphasis)
Like SDM, there is no standard under the Real Lives Law for determining when an individual can understand and appreciate the consequences of decisions that they supposedly make.
Vague definitions of “participant”
We think the Real Lives regulations, in particular, should be drafted to ensure that family members and guardians are the decision-makers for persons who are low functioning. As previously noted, identifying even very low-functioning individuals as the decision-makers can make them vulnerable to exploitation from corporate providers, and marginalize families.
The Real Lives Law is vague in that regard, stating that the “participant” in a PCP arrangement is “an individual with disabilities receiving department services and, when appropriate, an individual’s parents, legal guardian, conservator or other authorized representative…” (my emphasis).
In including an individual’s parents and guardian in the definition of “participant,” the statute does appear to recognize that there may be instances in which an individual with I/DD may not be able to act alone in making key decisions. But the statute does not provide any guidance as to when it would be appropriate for those others to become involved, who would make the decision to include others, or who the “other authorized representative” might be.
The proposed regulations provide no clarity in that regard either. In fact, the regulations, as currently written, take even the word “parents” out of the definition of “participant.” Under the proposed regulations, the term “participant”…”may refer to the individual, their guardian or other legally authorized person, as the context implies” (my emphasis).
In the November 2022 public hearing, even the Arc objected to the removal of the word “parents” from that definition.
Potential conflicts of interest
In our view, in failing to make it clear as to who the participant is, the Real Lives Law and its proposed regulations serve to further reduce the decision-making authority of parents and family members, and make it more likely that the real decision-makers will be providers who may also benefit financially from providing services to the individual.
Federal regulations (42 CFR 441.301(c)(1)(vi)) state that development of a Person-Centered service plan “cannot be performed by the individual’s provider of direct services unless there is no other willing and qualified entity available to that individual.”
The Real Lives Law in Massachusetts does prohibit “Independent Facilitators,” who the law states could be hired to help a participant develop a Person-Centered Plan, from also providing services to that participant. The proposed regulations do not mention Independent Facilitators, however. And neither the law nor the proposed regulations appear to prevent any other service providers from both advising participants and providing services to them.
In sum, PCP appears to have conceptual flaws that we think are likely to apply as well to Supported Decision Making in Massachusetts.
Both concepts need to go back to the drawing board. Otherwise, it appears we will be in the same situation 10 years from now with regard to both of these options as we are today with regard to PCP. It will be a situation in which many, if not most, participants will continue to be dissatisfied and frustrated.
Family members support subminimum wages at federal online hearing
Last week, at least 17 people testified in an online hearing hosted by the U.S. Department of Labor in favor of work programs that pay subminimum wages to persons with intellectual and other developmental disabilities.
Those 17 people were primarily mothers of children with severe or profound levels of intellectual disability or autism. They were from states all over the country, and they outnumbered the five people, most of them policy analysts or corporate provider employees, who spoke against subminimum wages.
Speaker after speaker said their son or daughter, or sometimes sibling, is not able to produce at the level necessary to earn a minimum wage. Consequently, those cognitively disabled individuals are unable to get work in integrated or competitive employment settings.
I also testified on behalf of COFAR at the November 1 hearing, arguing that disabled individuals and their families have a right to choose programs that pay subminimum wages. Yet, I had the feeling that the apparent majority support for subminimum wage programs during the hearing made no difference, and that minds in DOL have been made up on this matter.
The November 1 hearing was the second of three such DOL hearings regarding subminimum wages or “Section 14(c)” programs. The first hearing was held on October 26, and the final hearing will be on November 15 at 5:30 p.m. Information about registering for the November 15 hearing is available here.
There is no question that the payment of subminimum wages has been under attack. Most, if not all, of the members of the Massachusetts congressional delegation oppose subminimum wages.
Michelle Diament of Disability Scoop wrote last month that the DOL is “reviewing” subminimum wage programs at the request of a wide range of disability advocates and policymakers, including the Government Accountability Office, the National Council on Disability, the U.S. Commission on Civil Rights and the Labor Department’s Advisory Committee on Increasing Competitive Integrated Employment.
The U.S. Department of Justice appears to have summed up the federal position last month regarding subminimum wages and congregate employment settings, stating that:
In many sheltered workshops, for example, people with disabilities perform highly repetitive, manual tasks, such as folding, sorting, and bagging, in shared spaces occupied only by other people with disabilities. They also often earn extremely low wages when compared to people with disabilities in integrated employment, resulting in stigmatization and a lack of economic independence.
It doesn’t seem to have occurred to the DOJ or the other organizations listed above that that not all people with developmental disabilities are capable of achieving economic independence. There is no recognition by these organizations that there are individuals with developmental disabilities for whom highly repetitive, manual tasks are appropriate and fulfilling.
I wish at least one of the lawmakers in the Massachusetts delegation could have listened to the parents testifying during the November 1 hearing instead of listening only to lobbyists and the corporate providers on this issue.
Carol Skelly of Fairfax, VA, for instance, said her son Patrick, 36, has an intellectual disability and autism, and “really likes doing repetitive tasks.”
Carol said her son has “no notion of money,” so a minimum wage would mean nothing to him. No one will hire him at a competitive wage, she said. “Restrictions on subminimum wages have taken important work away from people at the more severe end of the disability spectrum,” she added.
Erica Royale, the parent of a 35-year-old man with a developmental disability, maintained that eliminating subminimum wages “will be the death of sheltered workshops.” She said her son “is thrilled at the jobs he accomplishes” in his sheltered workshop, and that the work “has brought meaning to his life.”
Carissa Ross of Warren County, NJ, spoke about her own experience in a sheltered workshop. She said that when she turned 19, she suffered a stroke that left her in a coma for 27 days. She underwent rehabilitation and had to relearn how to walk and eat.
Today, she said, she is legally blind and epileptic. Because of her disabilities, she was repeatedly denied employment in competitive workplaces. But in May 2015, a nonprofit accepted her into a 14(c) day program. “The 14(c) work program saved me,” she said. “The amount of money I made didn’t matter. The purpose of life matters.”
Elizabeth Steinleitner of Allentown, PA talked about her son John who was fired from several jobs. His 14(c) program “has been a Godsend for him,” she said.
Similar assessments of the benefits of subminimum wage programs were given by Mary Miller of Wisconsin about her 30-year-old son; Stacy of Boston regarding her sister Brenda; Susan Burke about her 22-year-old son; Kenneth Eisenhower of Texas about his 22-year-old daughter; Beth Lambert of Connecticut about her 40-year-old son; Darlene Borre about her son; Jacob Caplan of New Jersey about his brother; Carol London of California about his 26-year-old son; and Karen Rubel from Chester County, PA, about her daughter.
As the federal Developmental Disabilities Assistance and Bill of Rights Act states, “Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive.”
Policy makers at all levels of government must begin to recognize that it is those individuals with disabilities and their families who know what is best for them. They need to understand that the wishes of individuals and their family members should be paramount with regard to the care and services that government provides and funds.
DDS psychologist shortage may be causing delays in approving services
In addition to a shortage of direct care staff, the Department of Developmental Services (DDS) appears to be dealing with a shortage of psychologists who are needed to help determine eligibility for services for potentially hundreds of people each year.
Records obtained by COFAR from DDS under a Public Records Law request show that the Office for Civil Rights (OCR) with the U.S. Department of Health and Human Services investigated at least one complaint that an inordinately long delay by DDS during the past two years in processing an application for services amounted to discrimination against the applicant.
It took more than a year for DDS to determine that the applicant was, in fact, not eligible for DDS services. Under the Department’s regulations, eligibility determinations should take no longer than 60 days. The regulations state that the determination process can take an additional 60 days (or a total of 120 days) if the application is incomplete, which was apparently the case in this matter.
DDS cited “limited clinical resources”
The OCR ultimately determined that DDS had not discriminated against the applicant. However, the federal agency noted that DDS had acknowledged that the delay in processing the application was due to “limited clinical resources.”
According to the OCR report, DDS also stated that, “the departure of a full-time RET (Regional Eligibility Team) psychologist in June 2021 affected the turnaround for reviewing applications.”
COFAR is seeking additional records from DDS in order to determine the scope of the possible backlog in eligibility determinations. We initially requested the records in September after receiving a call from a parent who said she had been told the eligibility determination process in her region could take up to a year to carry out.
Under DDS regulations, the Regional Eligibility Teams consist at least one licensed doctoral level psychologist, an individual with a master’s degree in social work, and a Department eligibility specialist.
Job posting records show few hires
Our records request in September was for records concerning any backlogs or delays in processing eligibility applications, and concerning shortages of psychologists or other members of Regional Eligibility Teams.
Records provided in response so far by DDS show that the Department posted openings for psychologists on 15 occasions between July 2022 and September 2023. During that time, only two psychologists were hired, the records indicate. DDS has so far not responded to questions we submitted last week about the job posting records.
The postings were for eligibility psychologists, licensed psychologists III and IV, and regional, clinical, and senior psychologists. According to the records, the minimum salaries for those positions averaged $90,300, and the maximum salaries averaged $147,000.
Six of the job postings indicated that the hired psychologists would be involved in making determinations of eligibility for services.
OCR investigated whether delay was discrimination
According to the report by the OCR, dated June 27, on the discrimination complaint, the complainant alleged that the DDS Regional Eligibility Team had received their application for adult Community Developmental Disability (CDD) supports in January 2021. But it wasn’t until February 2022, or more than a year later, that the applicant was evaluated for his or her eligibility, the applicant alleged.
The complainant maintained that the delay prevented them from accessing benefits and care to which they were entitled. The complainant’s name was redacted in the report.
OCR is responsible for enforcing Section 504 of the federal Rehabilitation Act of 1973 and of Title II of the Americans with Disabilities Act (ADA). DDS is required to comply with both of those statutes.
Section 504 of the Rehabilitation Act states that no disabled person may be excluded or denied benefits on the basis of disability from any program receiving federal funding.
The OCR report stated that in May 2022, DDS issued an eligibility determination letter to the applicant informing them that they were actually ineligible for CDD supports as they did not meet all four criteria of the “Developmental Disability” definition.
OCR did not find noncompliance, for unclear reasons
Despite DDS’s admitted delay in processing the application, the OCR report stated that it had “not found sufficient evidence of noncompliance regarding the allegation that DDS discriminated against the complainant.” The report stated that the OCR’s determination applied only to that particular complaint.
While DDS was not cited in this case with a violation of either the Rehabilitation Act or the ADA, it is nevertheless concerning that the Department apparently has too few psychologists available to ensure timely reviews of eligibility applications and possibly for other functions.
According to the job postings, those other functions for psychologists include providing services to “individuals in crisis,” “completing functional behavior assessments,” providing clinical consultation and training to DDS service providers, and helping to “enhance newly created behavioral treatment strategies.”
It’s not clear whether the reason for the Department’s lack of clinical resources has to do with the salary range that the Department offers or what the Department may be doing to rectify the situation.
We hope that the next set of documents we are expecting from DDS will shed more light on this issue. What these documents show so far is evidence of what appears to be growing dysfunction within DDS in carrying out its mission of caring for the most vulnerable members of our society.
The burdens of Supported Decision Making will fall primarily on women
Guest post by Lara Dionne
As one of the parent-guardians of a young lady who is 18 years old and has Level 2 autism and moderate intellectual disability, I am very concerned about bills pending in the state Legislature to authorize Supported Decision Making (SDM) in Massachusetts (S.109 and H.201).
SDM would enable persons with developmental disabilities to sign agreements with informal teams of supporters, who would “help” them make decisions about all aspects of their care.
SDM is billed as a voluntary alternative to guardianships of those individuals, who are referred to as the “decision makers” in SDM arrangements. In reality, many proponents of SDM want to eliminate guardianships altogether.
The problem is that decision-making capacity (i.e., legal competency) should be included somewhere in S.109/H.201, and it is not. The bills need to recognize those whose disabilities render them unable to make informed, reasonable decisions in their best interest due to deficits in cognition related to developmental disability, intellectual disability, or a mental health condition which impairs sound judgement.
The legal competency issue is obvious and a blatant oversight. The bills’ proponents can’t have failed to recognize that there are some people for whom the SDM process would be entirely inappropriate. Those individuals need guardians, and in most cases, those guardians are their mothers, sisters, and daughters.
SDM will further destabilize families that are already under stress and take additional agency away from the very people the state is relying on to fill the gaping holes in their disability services infrastructure: primarily women.
SDM is a means to the end that the state appears to be seeking. In most cases, the “decision-maker” will choose the course recommended by his or her SDM “team.” That team is likely to consist of providers and Department of Developmental Services (DDS) personnel, in addition to family members.
As a result, it is likely that few “decision-makers” will choose congregate care facilities, and many may choose the lowest-cost option — their family home. Even now, well over half of adults with autism live with family caregivers, according to the Children’s Hospital of Philadelphia’s Center for Autism Research.
In case the obvious needs to be stated: It is still overwhelmingly women who take on the burden of caregiving for the disabled in the family home.
Women comprise just over 80% of stay-at-home parents. The Institute on Aging reports that 75% of all caregivers are women, and that female caregivers may spend as much as 50% more time providing care than men. Further, research completed at Drexel University found that 30% of families with a child with autism had to reduce working hours to care for their child.
Given the first two statistics, what do you suppose the likelihood is that those leaving work to provide care for autistic family members are women? Pretty darn high, I would say.
I would also love to know how many of these disabled individuals are cared for by their grandmothers because the state already burned through their parents with the weaponized incompetence that passes for disability services for this population. However, I suspect this is a set of statistics the state does not want to gather for many reasons.
My concern is that S.109/H.201 is yet another bit of health and human services legislation that claims to give autonomy to one oppressed class of individuals by taking away the autonomy of another oppressed class whose members will be expected to suffer the financial fallout and complete any labor associated with it: women.
It is worth considering the following: Is the state entitled to rely on the free labor primarily of women to fill in their programming gaps while they dismantle state-run services and outsource them to unstable private vendors? Is the state entitled to the free labor of women to care for legal adult citizens? I do not think it is.
When most children grow to adulthood, their parents can then focus on their career and build financial security with the goal of retiring someday. Why does the state think that parents ― again, mostly mothers ― of adult children with disabilities are not entitled to that?
I was shocked to learn that, in Massachusetts, parents and guardians cannot be paid caregivers under most MassHealth programs, including adult foster care and personal care attendant services. There is currently a crisis-level shortage of professional caregivers for our disabled and elderly. Yet Massachusetts will not pay families to do the work.
Massachusetts expects that families work for free, and they are getting it. That doesn’t really give the state much incentive to fix the direct care workforce shortage, does it? They are balancing their budgets on the backs of women.
There is proposed legislation this session — S. 775/H. 1232, An Act Relative to Family Members Serving as Caregivers — to undo this overtly exploitative practice of relying on unpaid, mostly female, caregivers in adult long-term care. The bill would allow legally liable individuals, parents and guardians, to be paid caregivers for their adult children under MassHealth programs.
According to Massachusetts regulation (101 CMR 420.00), which governs reimbursement for Adult Long-term Residential (ALTR) Services, the state pays a group home provider over $200,000 a year on average for adult residential services for an individual with autism and intellectual disability. It would seem humane to allow mothers (or other family members) providing the same care to receive a fraction of that $200,000, equal to a living wage.
To elaborate further on the lack of basic human decency extended to unpaid female caregivers of children with disabilities, employees in a group home setting have their employment governed by U.S. labor laws. Depending on the number of employees in their parent company, they may receive health insurance and family medical leave. They may get work credit toward future social security benefits. Many companies that provide group home services give their employees paid time off and overtime pay.
Most importantly, group home employees are able to go home and rest at the end of a shift, away from the demands of their charges. Mom gets none of those things. Her shift never ends. Where was the Department of Labor when mothers were being written out of these MassHealth caregiving programs? Why is the caregiving labor of family members ― again, primarily women ― not seen as labor while someone else does it for pay?
Women who have children with significant disabilities have often been out of the paid full-time workforce for years by the time their child reaches adulthood. It seems that keeping individuals with disabilities and their caregivers in poverty is an intentional feature of most government programs. The poor have no voice. The poor are too busy surviving to object to the violation of their civil rights. The poor become invisible.
When we closed the doors of many institutions, the level of support needed by disabled individuals with more profound disabilities did not decrease or cease to exist. Yet the state assumes that the mystical powers of motherhood will somehow miraculously accomplish what it used to take teams of paid professionals to do.
I urge you all to find and read the excellent article in The Boston Globe last month on abuse and neglect occurring in residential schools for children with autism and intellectual disability. Some people who are being paid, albeit inadequately, to do this labor are resorting to abusing clients.
When an excuse is offered for such egregious violations, it usually mentions the stresses of the job, staff turnover, and chronic understaffing. Still, these employees do have the supports and protections mentioned earlier.
Yet the burden on family caregivers ― primarily mothers ― is inordinately higher and there is no compensation involved. Mothers are expected to endure all that the inadequately compensated direct care workforce endures, and they are expected to do it alone, or while impoverishing themselves to qualify for any state support for their child.
Why is it not expected that this is going to result in domestic violence and child abuse? That would seem logical given what is happening in the paid disability services workforce. It is that mystical power of motherhood again, isn’t it?
The assumption of the right to the free labor of women doing work they cannot possibly do alone, given the lack of available state resources and, in many cases, the level of their child’s disability, is not only misogynistic, it is ableist. Yet SDM is designed to further support the push toward privatization and reliance on “natural supports” when this system can clearly be seen to be failing those with more profound disabilities.
SDM will place additional labor burdens on female caregivers, as well. The guardianship process is onerous enough, as it should be, given its gravity. However, once guardianship is approved, a legal guardian can provide caregiving services without needing to consult a team of people who may be difficult to assemble. It is hard enough for women to take time away from primary caregiving and a job and household demands to perform necessary legal and financial tasks for their adult children with disabilities.
Many of these tasks involve multiple calls, meetings, paperwork, and errands. For example: Has anyone had to apply for SSI on behalf of their adult child? Acquiring a state I.D. for documentation purposes, applying to be their representative payee (because guardianship isn’t enough to represent them with the Social Security Administration), and opening a representative payee bank account are quite a bit of work. Now imagine doing it in committee.
The adult child is not going to be able to perform this labor themselves. I also tend to doubt that their SDM team is going to do much of this work, if the disabled adult lives with family. It will be Mom or Grandma doing it with everyone on the team getting to tell them how to do their job.
Poor, working, and middle-class women will be unable to buy their way out of the caregiving responsibilities that will continue to be forced on them by SDM. The unpaid labor expectations and the micromanagement by a team of individuals, who will have interests and agendas that conflict with the health of the entire family unit, will push many female caregivers beyond their breaking point.
The state knows this, but the state also knows it has mothers over a barrel. At every stage in the life journey of your disabled child, mothers are expected to make a choice: Choose to sacrifice yourself or choose to potentially sacrifice your child’s health and future.
There is never a choice that considers the inherent worth and civil rights of both individuals. It is never mother AND child in disability law. It is solely focused on the child, but it depends upon ― it assumes the right to enlist― the mother’s labor in a manner that sacrifices her health, her career, and her financial independence.
Disability law creates dependency in female caregivers that leaves them vulnerable to poverty and abuse. It removes their agency. The SDM legislation (S.109/H.201) is merely the latest incarnation of disability law continuing that pattern.
It is morally wrong to rely on the lifelong free labor of a particular class of people — based on their sex — to save money and shirk social responsibility. This assumption of the right to the free labor of women bars many women from equal access to educational advancement, civic involvement, and financial security and independence.
Disempowering women further disempowers adults with profound autism and intellectual disability. Many of these adults cannot advocate for themselves. Women ― mothers ― are their voices. If the mothers of the profoundly disabled have no access to the power structure in our society, their children have no voice within that power structure. Their children’s needs go unanswered.
The desire to be able to earn a living wage, to prepare for a somewhat secure retirement, and to protect our physical and mental health does not mean that we women do not love our children and grandchildren. It means that we are people with rights to be considered too.
You can’t give freedoms to one class of people that rely on the continued oppression of another.
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Lara Dionne is a COFAR member and is currently attending Salem State University, working on a Certificate in Data Analytics, with the long-term goal of getting back into the workforce after many years of caregiving for both her daughter and elderly relatives. She looks forward to being paid for her labors, again.
DDS: We’re ‘not required to answer questions’ about the number of state-run group homes or of residents
As we have reported, the census or number of residents living in state-operated residential group homes and Intermediate Care Facilities (ICFs) in Massachusetts appears to be steadily declining.
But in response to Public Records requests filed by COFAR, first in January and then last month, the Department of Developmental Services (DDS) said it no longer has information on the actual number of people living in state-operated group homes during the past five years.
If it is true that DDS has no such records, it would indicate that the Department is unaware of the status of one of its most important operational programs.
DDS has also declined to clarify an apparent discrepancy in its claims concerning the number of state-operated group homes that have been closed since 2021.
We have appealed to the state’s public records supervisor in an effort to get clarification on those matters. In a response filed on Friday to our appeal, a DDS attorney said that under the Public Records Law, “an agency is not required to answer questions…”
Denial of group home information
Prior to this year, DDS did provide us with information on the declining census in state-operated group homes. That data showed a steady decline from a high of 1,206 residents in Fiscal Year 2015, to 1,097 in 2021. During that same time, the census in the much larger network of corporate, provider run group homes, also funded by DDS, rose from 7,793 to 8,290.
But as of January of this year, as noted, that information on the census in the state-operated group home system is apparently no longer available. What DDS said in January and again in September is that while it can provide information on the total available beds in, or capacity of, state-run group homes over the past five years, it now has no records on the census.
In September, DDS stated that the total capacity of the homes had declined from 1,173 beds to 1,131 beds between Fiscal 2019 and 2023.
But capacity numbers don’t tell the full story, particularly if DDS has not been allowing admissions to the group homes, and there consequently are vacancies in them. In fact, DDS acknowledged last month that there were 91 vacancies in the state-run group home system as of June of this year. That would imply that the actual census in the homes is lower than the capacity.
But DDS also said that while there were 91 vacancies as of June 30, it has no records on the number of vacancies each year since Fiscal Year 2019.
We calculated the apparent drop in the census as of Fiscal Year 2023
Based on the Department’s partial records, we did our own calculation of the census in the state-run group home network as of Fiscal Year 2023. That year, it appears the census would have dropped to 1,040.
That census or number of residents is based on DDS’s statement that the capacity of the state-run group homes was 1,131 in Fiscal 2023, and that there were 91 vacancies in the group homes as of June 30, the last day of that fiscal year. Subtracting the number of vacancies from the census that year equals 1,040. (1,131 minus 91).
If that is the case, it would indicate that the census in the state-run group homes dropped from 1,206 in Fiscal 2015 to 1,040 in Fiscal 2023, a 14% drop. See our chart below.
(Source: DDS. Note: We were not able to calculate the census in the state-run group homes in Fiscal Year 2022 because DDS did not provide a figure on the number of vacancies in that fiscal year.)
DDS will not clarify number of homes closed
As noted, DDS is not willing to clarify seemingly contradictory information on the number of group homes that have been closed and subsequently reopened since August 2021, during the height of the COVID crisis.
In September, DDS indicated that a net of nine state-run homes were closed between August 2021 and September 2023, leaving 251 homes remaining. However, eight months earlier – in January — DDS indicated that a net of six state-run homes were closed between August 2021 and January 2023, leaving 250 homes remaining as of January.
The implication of the January data was that 256 homes existed as of August 2021, whereas the implication of the September data was that 260 homes existed as of August 2021. The discrepancy might also mean that the number of homes that DDS said were closed may have been inaccurate.
However, as noted, when I asked that DDS provide clarification regarding that apparent discrepancy, a DDS attorney stated that, “Under the PRL (Public Records Law), an agency is not required to answer questions…”
The Public Records Law does require clarity
As part of our appeal, we stated to the public records supervisor that we believe DDS is, in fact, obligated to clarify information it provides under the Public Records Law.
The Massachusetts Guide to the Public Records Law, updated in March 2020, states that, “(State agencies) must help the requestor to determine the precise record or records responsive to a request…”
Also, the Public Records Law [M.G. L. c. 66, § 6A(b)] states that:
(The state agency) shall: …(i) assist persons seeking public records to identify the records sought;… and (iii) prepare guidelines that enable a person seeking access to public records in the custody of the agency or municipality to make informed requests regarding the availability of such public records electronically or otherwise…Each agency and municipality that maintains a website shall post the guidelines on its website.
In asking for clarification regarding the number of homes that existed as of August 2021 and have subsequently been closed, we were seeking the Department’s help in determining the precise record or records that might be responsive to our Public Records requests.
In sum, DDS’s response to our latest records requests seems to be part of the Department’s usual pattern of providing as little information as it feels it can get away with under the Public Records Law. The only other explanation is that the Department doesn’t have basic information about the programs it runs. We’re not sure which explanation is more troubling.
DDS confirms 91 vacancies in state-operated group homes even after several homes are shut
The Department of Developmental Services has confirmed for the first time that there are dozens of vacant beds in its state-operated group home network, even though the Department also says it has closed a net of nine homes since August 2021.
That information was provided to us in response to a Public Records Request, which we filed earlier this month with the Department.
In a response on September 26 to our request, DDS stated that as of June 30, there were 91 vacancies in the state-operated group home system.
COFAR has long contended that there are vacancies in state-operated homes because DDS generally does not inform individuals seeking residential placements of the existence of that system. Instead, DDS seeks to place virtually all persons in its much larger network of corporate provider-run group homes.
We are frequently told by families seeking placements for their loved ones in the state-run system that there are no vacancies in state-operated homes.
DDS also does not inform or generally admit persons to either of its two remaining Intermediate Care Facilities (ICFs) in the state – the Wrentham Developmental Center or the Hogan Regional Center. As a result, the number of residents living in state-run residential facilities has continued to decline, while the number in corporate run group homes has been steadily increasing.
COFAR has periodically filed Public Records requests with DDS to track the declining census in both the state-operated group home system and the Wrentham and Hogan Centers. The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.
DDS has continued to maintain that the corporate provider system is less restrictive and better integrated into the community than is the state-run residential system. However, as a Spotlight investigation by The Boston Globe showed on September 27, the corporate group home system is beset by abuse and neglect.
The data provided by DDS on September 26 show the following:
- There were 91 empty beds in state-operated group homes as of June 30. The Department, however, said it “does not have any responsive records” pertaining to COFAR’s request for the number of vacancies in the state-operated group homes each year from Fiscal Year 2019 to the present.
- The census, or total number of residents, at the Wrentham Center dropped by 48%, from 323 residents in Fiscal 2013, to 167 in Fiscal 2023.
- The census at Hogan dropped from 159 in Fiscal 2011, to 95 in Fiscal 2023, a 40% drop.
- The total census in the state-run group home system dropped by nearly 10% between Fiscal 2015 and 2021, according to previous DDS data. However, DDS has not provided information on the census in the state-run homes since 2021. We have appealed that apparent information denial to the state supervisor of public records.
- The total capacity, or number of beds, in the state-run group home system declined by 3.6% from Fiscal Year 2019 to Fiscal 2023.
- DDS says it closed a net of nine state-operated homes between August 2021 and September of this year. As noted below, the numbers don’t appear to add up, however. We’ve appealed for clarification.
Declining capacity and census in state-operated group homes
As the chart we created below based on the DDS data shows, the total capacity or number of beds has continued to decline in state-run group homes. That capacity declined from 1,173 beds to 1,131 beds, or by 3.6%, between Fiscal 2019 and 2023.
Previous data from DDS showed that the total census in the state-operated group homes declined from a high of 1,206 in Fiscal 2015, to 1,097 in 2021 — a 9% drop.
DDS numbers don’t add up
In addition to appealing the lack of census information regarding the state-run group home system subsequent to 2021, we are appealing to the public records supervisor to seek clarification from DDS regarding an apparent discrepancy in the numbers the Department has given of homes that have been closed since 2021.
The September 2023 DDS response to our Public Records request indicated that a net of 9 state-run homes were closed between August 2021 and September 2023, leaving 251 homes remaining.
However, data previously provided in January indicated that a net of 6 state-run homes were closed between August 2021 and January 2023, leaving 250 homes remaining as of January.
The implication of the January data was that 256 homes existed as of August 2021, whereas the implication of the September data was that 260 homes existed as of August 2021.
We have asked the public records supervisor to require DDS to account for the apparent difference between the two responses in the number of homes that existed as of August 2021.
DDS consistently maintains it has no records regarding the future of state-operated care
Despite the continuing downward trend in the census at Wrentham and Hogan, DDS said in January and again in September that they have no records concerning projections of the future census of those facilities or concerning plans to close them. Nevertheless, we maintain that unless DDS opens the doors at those settings to new residents, they will eventually close.
Violation of federal law not to offer state-run facilities
In a June 5 legal brief, DDS argued that federal law does not give persons with intellectual or developmental disabilities the right to placement at either the Wrentham or Hogan Centers. We think the Department’s argument in the brief misrepresents federal law, and reflects an unfounded bias among policy makers in Massachusetts against ICFs.
As Medicaid.gov, the federal government’s official Medicaid website, explains, “States may not limit access to ICF/IID service, or make it subject to waiting lists, as they may for Home and Community Based Services (HCBS)” (my emphasis). In our view, the federal Medicaid law and its regulations confer the right to the choice of ICF care to individuals and their families and guardians.
Meetings with state and federal lawmakers to bring these concerns to their attention
Last week, we met online with state Representative Jay Livingstone, the new House chair of the state Legislature’s Children, Families, and Persons with Disabilities Committee, to raise our concern about the declining census in state-run facilities and to discuss their vital contribution to adequate care in the system. We are similarly seeking a meeting with Senator Robyn Kennedy, the new Senate chair of the committee.
So far, we have also met online with legislative staffs of U.S. Senators Elizabeth Warren and Ed Markey, and of U.S. Representatives James McGovern, Lori Trahan, Catherine Clark, Seth Moulton, and Stephen Lynch, and have imparted that message. We still have four additional members to meet with in the Massachusetts congressional delegation.
In our meetings with the staff members of the congressional delegation, we are urging that the lawmakers oppose pending bills that would expand funding to the largely privatized, community-based system, but would not direct similar funding to either Wrentham or Hogan.
In sum, the data we have gotten from DDS have shown a consistent pattern by multiple administrations of building up the privatized DDS group home system while letting state-run residential facilities wither and ultimately die. As we’ve said before, we think that will result in a race to the bottom in the quality of care in the DDS system.
In our experience, state-run residential facilities in Massachusetts, as in most other states, meet higher standards for care than do privatized settings, and tend to have higher paid, better trained, and more caring staff. We want to bring that message to our state and federal legislators before it’s too late.
COFAR blog 