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.
Latest Supported Decision Making bill offers no improvements over previous versions
We first pointed out problems seven years ago with a bill in the state Legislature that would authorize Supported Decision Making (SDM) in Massachusetts.
SDM involves written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors.
Each year, SDM legislation has gotten closer and closer to final passage in the Legislature; and yet, as far as we can see, the proponents of the bill have not made what we argue are needed changes or improvements to the versions of the bill that they have continued to file.
This year’s version of the bill, S. 109, is no exception. In our view, it has the same problems as the previous versions.
Last year’s version of the bill (S. 3132) passed the Senate in November and died in the House Ways and Means Committee, just one step away from final passage in the full House. At the time, we had urged the Ways and Means Committee not to send the bill to the House for final passage.
As we noted in a previous post about that bill, it lacked provisions to protect the rights of persons with intellectual and developmental disabilities, and their families and guardians.
S.109, this year’s version, is now before the Children, Families, and Persons with Disabilities Committee. We are similarly asking the Committee this year not to advance the bill in the legislative process without making needed changes to it.
Under the bill, an SDM “supporter” or “supporters” would help an individual with an intellectual disability, known as the “decision-maker,” make key life decisions, including decisions about their care and finances. Most people with developmental disabilities currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.
But persons with severe and profound levels of intellectual disability have greatly diminished decision-making capacities. We think many of those people are likely to be vulnerable to coercion and financial exploitation from persons on their SDM teams who may “help” them make financial decisions that don’t reflect their wishes.
In these situations, family members of persons with developmental disabilities, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who may stand to benefit financially from the clients’ “decisions.”
Legislation still does not provide a standard for judging the decision-making capacity of the individual
In our view, a key piece missing from the SDM legislation so far has been a standard for the level of intellectual disability above which an individual can reasonably be considered to be capable of making decisions with “support” from clinicians, paid caregivers, and other SDM team members.
As was the case with previous versions of the bill, S.109 defines the “decision-maker” 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 bill. 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.
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)
Also, “Supported decision-making” is defined in S.109 as:
…the process of supporting and accommodating the decision-maker, without impeding the self-determination of the decision-maker, in making life decisions, including, but not limited to: (i) decisions related to where the decision-maker wants to live; (ii) the services, supports, financial decisions and medical care the decision-maker wants to receive; (iii) whom the decision-maker wants to live with; and (iv) where the decision-maker wants to work.
There is no specification as to whether the “supporter(s)” would be family members. In other words, family members could be frozen out of the decision-making process if they were consistently outvoted by other supporters.
Bill doesn’t require court approval of an SDM arrangement
Currently, a person applying for guardianship must state in probate court the reason why a guardianship is necessary; and if they are applying for a full guardianship, the reason why a limited guardianship is inappropriate.
There is no requirement in S. 109, however, that the probate court approve an application for an SDM arrangement. However, S.109 would impose an additional burden in probate court on family members who continue to seek guardianship of their loved ones.
Under S. 109, an applicant for guardianship would now have to state in court, “whether alternatives to guardianship … including a supported decision-making agreement, were considered, (and) why such alternatives to guardianship and supports and services are not feasible or would not prevent the need for guardianship” (my emphasis).
Given that applying for guardianship requires probate court approval, it isn’t clear to us why that shouldn’t also be the case with an SDM agreement, which would entail making the same types of life decisions involving an incapacitated individual. Moreover, it isn’t clear why applicants for guardianships should have an additional burden placed on them in court to show why an SDM arrangement, rather than the requested guardianship, isn’t needed.
No clear protection against financial or other exploitation
S.109 states 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.”
This statement in the bill appears to recognize the possibility that a developmentally disabled individual can be influenced or coerced into signing a SDM agreement. The problem with the bill in this regard is there is no description of the type or level of coercion that would invalidate an SDM agreement. Also, the bill doesn’t specify who would invalidate the agreement in that case.
The legislation states that if a person suspects that a disabled individual is being abused or exploited under an SDM arrangement, they can take their complaint to the Disabled Persons Protection Commission (DPPC). But while the DPPC’s enabling statute authorizes the agency to investigate allegations of abuse and neglect, the DPPC is not specifically charged with investigating cases of alleged coercion in signing agreements.
S. 109 also states that the DPPC and the Department of Developmental Services (DDS) may petition the probate court to revoke or suspend a SDM agreement on the grounds of abuse, neglect or exploitation by supporters. But the bill doesn’t say that either the DPPC or DDS will or must petition the court to revoke the SDM agreement even if they do find abuse or neglect. It says only that they “may” petition the court to do so.
No protection against conflicts of interest, and no funding
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.
A Syracuse Law Review article published last year about SDM pilot projects in Massachusetts identified, or at least implied, a number of problems or difficulties associated with SDM, including conflicts of interest involving providers.
The Syracuse Law Review article stated that in the Massachusetts pilot project:
…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).
But like bills that have come before it, S.109 does not require any separation between provider employees and individuals on the SDM team. They can serve in both capacities.
The Syracuse Law Review article also stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”
There is no reference in S.109, however, to a potential funding mechanism for SDM in Massachusetts.
No dispute resolution process
The Syracuse Law Review article also recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.”
While S.109 and previous versions of the bill would require the Executive Office of Health and Human Services in Massachusetts to establish an SDM training program, none of the bills specify or specified either a dispute resolution process for SDM arrangements or training in dispute resolution.
Families may not fully understand the guardianship rights they will be forgoing
SDM advocates argue that the process is entirely voluntary on the part of the intellectually disabled individual, and that family members can still opt to go to court to apply for guardianship.
But it may be wrong in all cases to assume that someone who has a severe or profound level of intellectual disability has not been coerced into making what may look on the surface like a voluntary decision. Also, while a family member may still go to court to become a guardian, the SDM legislation, as noted, would increase the burden on them to make the case for guardianship.
And while family members might be persuaded to willingly enter into SDM agreements rather than to seek guardianship of their loved ones, we think many family members may not realize the amount of authority they would be ceding in doing so. Under an SDM arrangement, a family member would become just one member of the SDM team.
It has been our experience, that in many disputes over care, family members find themselves pitted against a united front of provider and DDS personnel. This would seem to be a highly likely dynamic in an SDM arrangement.
Unless and until the proponents of this legislation finally agree to address these issues and improve the bill, we can’t support it.
Why we are asking federal and state lawmakers to help save the Wrentham and Hogan Intermediate Care Facilities
We believe individuals with intellectual and developmental disabilities in Massachusetts have a right under federal law to care at the Wrentham and Hogan Intermediate Care Facilities (ICFs).
They also have a right to work opportunities in their day programs and other congregate care settings.
Those rights are under continued assault. (See here and here.)
As a result, we are contacting members of the Massachusetts delegation in Congress and key members of the state Legislature, and are asking them to relay information about those rights to policymakers at the federal and state levels.
It seems to us that most lawmakers and policymakers do not recognize the wide range of functioning and needs among people with intellectual and developmental disabilities, or the importance of giving this population a full continuum of choice. One size does not fit all.
DDS phasing out state-run residential care
The Massachusetts Department of Developmental Services (DDS) is allowing the state’s two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — to slowly die by attrition. We believe the eventual closures of these essential backstops for care of the state’s most profoundly disabled residents will be disastrous.
So far, we have met online with legislative staff of U.S. Senators Elizabeth Warren and Ed Markey, and of Representatives James McGovern, Seth Moulton, and Catherine Clark, and imparted that message. We still have six additional members to meet with in the congressional delegation.
Next week, we will also meet online with staff of state Senator Robyn Kennedy, the new Senate chair of the Legislature’s Children, Families, and Persons with Disabilities Committee. We hope to discuss these issues with Senator Kennedy herself, at some point, and will try to schedule a meeting soon with state Representative Jay Livingstone, House chair of the Committee, and his staff.
We want these legislators to know that DDS has failed to inform families and guardians of individuals in the DDS system of the existence of the Wrentham and Hogan Centers, and, with few exceptions, has denied their requests to place their loved ones in those facilities. The Department is also failing to inform people of the existence of its network of state-operated group homes.
What DDS has done has been to attempt to place virtually all persons waiting for residential services in the much larger network of corporate provider-run group homes that the Department funds.
That policy was explicitly confirmed in a decision earlier this month in which DDS Commissioner Jane Ryder upheld the denial of an appeal by the parents of an intellectually disabled man to place their son at Wrentham.
In that case, the parents presented evidence that their son has received inadequate services in his provider-run group home. He is also facing eviction from the residence, and had been abused by staff employed by his group home and day program provider. But a DDS-appointed hearing officer adopted the Department’s position that “federal law does not entitle the (son) to admission to an Intermediate Care Facility at WDC (the Wrentham Center).”
DDS policy runs counter to federal rules
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). The son’s group home in the appeal case is run by a corporate DDS provider that is partly federally funded under the HCBS program.
Unfortunately, in his decision, the hearing officer confirmed that DDS’s policy is the opposite of the federally prescribed policy that states may not limit access to ICFs. The hearing officer stated that he agreed with the testimony of a DDS regional director in the appeal hearing that, “DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.”
In our view, however, the federal Medicaid law and its regulations confer the right to the choice of ICF care to individuals and their families and guardians.
DDS, like many advocates of deinstitutionalization of care for people with intellectual and developmental disabilities, has also regularly misinterpreted the landmark Olmstead v. L.C. Supreme Court decision, which also implies a right to ICF care for those who desire it.
Federal ICF legislation that we support and oppose
In our meetings, we are urging lawmakers in Congress to oppose pending bills that would expand funding to largely privatized HCBS system, but would not direct similar funding to ICFs.
We oppose:
The Latonya Reeves Freedom Act of 2023
- H.R. 2708 (Steve Cohen, D-TN) https://www.congress.gov/bill/118th-congress/house-bill/2708
- S.1193 (Michael Bennett, D-CO) https://www.congress.gov/bill/118th-congress/senate-bill/1193
As Hugo Dwyer, executive director of the VOR, our national affiliate explained, this legislation was proposed by ADAPT, an organization that has “repeatedly called for the elimination of the ICF model.” Dwyer stated that VOR supports “keeping all services available and allowing individuals and their families to choose what is right for them.”
- H.R.547 (Debbie Dingell, D-MI) https://www.congress.gov/bill/118th-congress/house-bill/547
- S.100 (Bob Casey, D-PA) https://www.congress.gov/bill/118th-congress/senate-bill/100
- H.R.1493 (Debbie Dingell, D-MI) https://www.congress.gov/bill/118th-congress/house-bill/1493
- S.762 (Bob Casey, D-PA) https://www.congress.gov/bill/118th-congress/senate-bill/762
Dwyer noted that these latter bills would increase federal Medicaid funding for direct-care wages, which we and VOR support. But those wage increases would be in HCBS settings only, leaving out the ICFs.
We support:
Recognizing the Role of Direct Support Professionals Act
- H.R.2941 (Brian Fitzpatrick, R-PA) https://www.congress.gov/bill/118th-congress/house-bill/2941
- S. 1332 (Maggie Hassan, D-NH) https://www.congress.gov/bill/118th-congress/senate-bill/1332
Dwyer said these bills would help raise wages and training of direct-care staff in all settings, including ICFs.
Work opportunities legislation
With regard to work opportunities for people with intellectual and developmental disabilities, two pending bills in Congress would encourage such opportunities:
We support:
- H.R.1296 (Glenn Grothman, R-WI) https://www.congress.gov/bill/118th-congress/house-bill/1296
- H.R.553 (Glenn Grothman, R-WI) https://www.congress.gov/bill/118th-congress/house-bill/553
The Restoration of Employment Act would give an individual a choice whether to accept employment at a subminimum wage. (This blog post explains why the subminimum wage is needed by people who are unable to compete in the mainstream workforce.)
The Workplace Choice Act states that a program setting in which an intellectually disabled individual is able to interact with “colleagues, vendors, customers, and superiors…” would be considered a “competitive, integrated employment” setting. This would allow people who can’t compete in the mainstream workforce to be provided with work activities in their day programs.
We oppose:
- H.R. 1263 (Bobby Scott, D-VA) https://www.congress.gov/bill/118th-congress/house-bill/1263
- S.533 (Bob Casey, D-PA) https://www.congress.gov/bill/118th-congress/senate-bill/533
- H.R. 4889 (Bobby Scott, D-VA) https://www.congress.gov/bill/118th-congress/house-bill/4889
- S.2488 (Bernie Sanders, I-VT) https://www.congress.gov/bill/118th-congress/senate-bill/2488
The legislation above would make work opportunities harder to find for people who can’t handle mainstream work environments. Those bills would remove the option of the subminimum wage.
A number of family members have joined us in our online meetings with legislators. If you are interested in attending upcoming meetings, let us know. Your stories are vitally important for lawmakers and policymakers to know.
In ruling criticized as biased, DDS denies family’s request to place son at the Wrentham Center
As had been expected, Department of Developmental Services (DDS) Commissioner Jane Ryder last week upheld the denial of a request by a couple to place their intellectually disabled son at the Wrentham Developmental Center.
Ryder upheld a recommended decision by DDS Hearing Officer William O’Connell, who had previously denied a request by the couple to submit a COFAR blog post in rebuttal to a DDS closing brief in the case.
The COFAR post claims, among other things, that federal law gives individuals a right to care in an Intermediate Care Facility (ICF) such as the Wrentham Center.
The couple, who have asked that their names not be used, have sought the Wrentham placement as part of an appeal of their son’s Individual Support Plan (ISP). They contend the DDS-funded corporate provider that operates their son’s group home and day habilitation program does not provide services their son needs, such as nursing, speech and occupational therapy; and they note that these services are provided at Wrentham.
O’Connell’s 24-page recommended decision denying the couple’s appeal was dated July 20. The couple maintain that the language and reasoning in O’Connell’s decision confirms that he held a bias against them and in favor of DDS.
Son had been abused at day hab program and is facing eviction from group home
The couple also stated in their appeal that their son had been sexually and physically abused in his day hab facility. They further stated that the provider sought last September to evict their son from the group home after he had a toileting accident on the group home’s outside deck.
The eviction is currently on hold based on the couple’s objection to it under DDS regulations.
The couple said they are considering an appeal of O’Connell’s decision in state Superior Court. They said their hope is that a win in court would establish a precedent for other families seeking to place their loved ones with intellectual and developmental disabilities at either Wrentham or the Hogan Regional Center, the two remaining congregate ICFs in Massachusetts.
In ruling against the couple, O’Connell cited the testimony of two DDS regional directors during a hearing on the couple’s appeal in April. O’Connell stated that based on that testimony, he concluded that “the assessments and/or goals used to develop (the son’s) ISP…form a more than adequate basis for service planning for (the son), including his needs and treatments.”
O’Connell also stated in his decision that the son’s current services are “the ‘least restrictive’ to meet (his) current needs.”
O’Connell’s decision, however, largely did not address the couple’s contention that the actual services their son has received in his group home are inadequate.
Also, as COFAR pointed out in the blog post, which O’Connell would not allow to be submitted, “a statement that a community-based setting is necessarily less restrictive than an ICF is an ideological position that ignores the evidence.”
Hearing officer appeared to have a bias against the family
The couple further noted to us that the regional directors whose testimony was cited by O’Connell are bureaucrats who are largely unfamiliar with the day-to-day care of the son. Yet, the couple said, O’Connell clearly placed all of his credence in the directors’ testimony and not in their own testimony.
In his final decision, O’Connell used the term “credible” or “credibly” to describe the testimony of the two DDS regional directors at least 14 times, while repeatedly stating that the couple had “not met the burden of proof” and had not provided “probative evidence” to support their request that their son be placed at Wrentham. He didn’t explain why their evidence wasn’t probative.
The mother also told us that during the April hearing, O’Connell had expressed repeated impatience with her, telling her to “get to the point…” She said he never interrupted the DDS attorney.
O’Connell had also stated in his previous ruling that the COFAR Blog post was “not probative” as a reason for refusing to consider COFAR’s rebuttal to the DDS closing brief. The blog post would have required him to address several points including:
- That the federal Medicaid statute does provide a right and choice to individuals and their families to ICF care.
- That care at Wrentham and Hogan is not necessarily more restrictive than in provider-run group homes.
- That the couple’s son’s care in the community-based system has not been successful for the past 13 years, as the DDS closing brief stated, and O’Connell repeated.
- That DDS’s policy for many years of blocking new admissions to both Wrentham and Hogan is likely to result in the eventual closure of both of these vitally important backstops of care for some of the state’s most vulnerable residents.
In his decision, O’Connell also repeatedly stated that the couple had rejected all providers of community-based residential services that DDS had identified for them. But he did not acknowledge that the couple said they did so because they believe the community-based system has failed their son and will continue to do so.
ISP hearing process inherently unfair
COFAR has additionally questioned the fairness of the ISP appeal process, under which both the hearing officer is appointed by the DDS commissioner, and the commissioner then makes the final decision whether to uphold the hearing officer’s ruling. COFAR has called for such appeals to be decided by the state’s independent Division of Administrative Law Appeals.
Hearing officer discounted the impact of sexual and physical abuse of couple’s son
In his decision, O’Connell played down the impact of two incidents of sexual and physical abuse of the couple’s son, which the couple said were part of the reason they don’t believe the community-based system is safe or adequate for him. Both incidents had occurred in the bathroom of the day hab facility.
In one case in 2017, a staff member at the day hab program slapped the son on the head, punched him in the back, grabbed his genitals, and was verbally abusive to him over the course of several days.
In a second case in 2015, the son arrived from the day hab facility with a belt tightened so tightly that the parents couldn’t get it off. They said the belt was used to keep their son from going to the bathroom and moving his bowels. Their son has Crohn’s disease and needs to use the bathroom frequently.
According to the couple, their son cried and screamed when they tried to get the belt off. They said he had clear marks and indentations on his stomach which they photographed. In both cases, abuse was substantiated by the DDS investigations unit.
But O’Connell stated in his decision that:
I credit the (couple’s) concerns regarding (their son’s) well-being and safety given these terrible events, but find they were at day supports, not a residential placement, and thus do not have particular probative effect to the (couple’s) current appeal of the ISP and POC (Plan of Care).
O’Connell also stated, in line with the DDS closing brief, that the abuse happened five or more years ago.
But O’Connell didn’t mention that the same provider that runs the son’s day hab program also runs his group home. Also, there was no evidence presented by DDS or the hearing officer that abuse and neglect in the DDS provider system has become less prevalent in the past five years or that the abuse is unlikely to occur again.
Also, abuse in the provider system in general is not restricted to day programs, but occurs in residential settings. If the son were to be admitted to Wrentham, he would attend a day program there, where the abuse rate is likely to be lower than in the provider system.
We have found that abuse overall is lower in the ICFs than in provider run group homes.
Did not address specific services allegedly missing from the community
In a brief that they filed with their original appeal, the couple stated that there is no speech, occupational, recreational, or vocational therapy available to their son in his group home. The group home provider doesn’t provide those services, but Wrentham does.
The couple also stated that their son’s group home and day hab provider have not assigned a nurse to him or provided the name of a nurse to call in case a medical issue arises. They also said there is no nursing listed on his ISP or day hab service plan.
Also, the couple stated that no one at the group home “knows about (their son’s) health status at any given time.” For instance, they said, no member of the staff was aware their son was due for a colonoscopy in June.
The couple also maintained that in most doctors’ offices in the community, there are no accommodations for individuals like their son who have trouble waiting for long periods of time to be seen by the doctor.
O’Connell’s decision largely did not address these specific issues. However, O’Connell did respond to the couple’s contention that their son is not receiving the proper nursing care, writing that “DDS has indicated they will work with (the provider) and any subsequent residential agency to support (the son’s) specific nursing needs.”
The couple maintained to us, however, that saying DDS will “work with” the provider is a tacit admission that the service doesn’t currently exist, and is not an assurance that anything concrete will be done. Those nursing services, however, do exist at Wrentham.
O’Connell also stated that one of the DDS regional directors “credibly testified” that the couple had stated during an informal conference prior to the hearing that the son’s doctor is “excellent.” While that may be the case, the fact remains that the medical staff at Wrentham are highly trained to deal with people with intellectual disabilities, while medical staff in the community are not.
Also, O’Connell stated that the son’s difficulties in waiting at doctors’ officers “are common and easily managed by staff.” The parents disputed this, saying that if that behavior were easily managed, the problem would have been solved long ago.
Couple says son did not face discharge due to their actions
In his decision, O’Connell, once again adopting the DDS closing brief position, stated that the couple were notified last September that the son’s provider “was looking to discharge (him) from their residential placement services due to the (couple’s) actions, not due to any issue with (the son) or (the provider’s) ability to serve (the son).”
O’Connell did not say what those actions were that the parents allegedly committed. Moreover, the couple disputed O’Connell’s characterization of the matter. According to the couple’s original appeal brief, the incident that led to the discharge notice started when no staff were available in the residence to let their son inside to use the toilet.
The group home blamed the couple following the son’s accident on the group home deck, claiming they failed to clean up the area and failed to notify the staff about it. The couple dispute that charge, saying they used a sheet in their car to clean up the area and then emailed both provider and DDS officials about it.
The couple said there was one other incident that precipitated the discharge notice having to do with a Facebook post that the mother made that was critical of the staff of the group home. Neither of these incidents, in our view, are sufficient reasons to have issued a notice to evict the son. No details were provided in the hearing officer’s decision about either of those reasons for the discharge notice.
In sum, O’Connell’s decision in this case, in our view, shows exactly why the ISP appeal process is inherently unfair to families and guardians. His decision was entirely supportive of DDS’s position, and was entirely dismissive of the testimony and evidence put forth by the parents.
For the reasons the couple enumerated, we too hope they will win in court should they decide to appeal, and that this case would then set a precedent that might serve to save the Wrentham and Hogan Centers and other state-run residential programs and services from eventual extinction.
DDS finally agrees to allow client to stay with shared-living caregiver; but caregiver’s payment will be cut almost 50%
A year after having disenrolled Mercy Mezzanotti from her shared-living program, the Department of Developmental Services (DDS) finally agreed this past spring to allow Mercy to continue to receive shared-living services from her longtime caregiver, Karen Faiola.
But before doing so, the Department’s Worcester area office reassessed Mercy as a candidate for shared-living services, and increased her assessed level of functioning. That move, according to Karen, will cut her previous income for caring for Mercy by close to 50%.
A higher level of functioning implies a lower level of needed services. However, both Karen and Mercy contend that Mercy’s needs and level of functioning have not changed. Mercy was found by DDS in 2004 to qualify to receive Home and Community Based (HCBS) as well as institutional services from DDS.
“They are continuing to punish us,” said Karen, referring to the DDS area office. Karen and Mercy claim both DDS and Venture Community Services, Karen’s former shared-living contract agency, retaliated against them after they alleged that Venture employees abused Mercy emotionally last year.
Karen Faiola and Mercy Mezzanotti
As we argue below, it also appears that the DDS reassessment of Mercy did not comply with departmental regulations. The regulations require that such an assessment be done by a qualified eligibility team and that notice of the reassessment be provided to Mercy.
Income for caring for Mercy would decline from $38,000 a year to $20,000
Karen said she was told last month by Mercy’s new shared-living contract agency that as a result of the new assessment by DDS, her previous annual income for caring for Mercy will be reduced from $34,000, which she had earned under the Venture contract, to roughly $20,000. Also, she will no longer receive a $4,000 respite allocation for providing services.
Both Karen and Mercy contend the DDS Area Office has deliberately sought to reduce Karen’s pay as part of a continuing vendetta against them for having complained last year that two employees of Venture had emotionally abused Mercy. Karen said the pay cut will it very difficult for her to continue to care for Mercy and to survive financially.
Contract termination followed by involuntary removal from home and disenrollment from program
Mercy has been living in Karen’s Sutton home for the past five years. Karen had been Mercy’s paid shared-living caregiver from 2018 until Venture terminated its contract with Karen in May 2022 without providing a stated reason for the termination. DDS pays corporate providers such as Venture to contract directly with shared-living caregivers.
Prior to the contract termination, Mercy and Karen had complained to Venture that a Venture job coach and a second Venture employee had emotionally abused Mercy.
On the same day that Venture terminated its contract with Karen, a Venture employee removed Mercy against her will from Karen’s home and placed her with another caregiver in Worcester whom Mercy had never met.
When Karen, at Mercy’s insistence, brought Mercy back to her home two days later, DDS moved to disenroll Mercy from its federally reimbursed HCBS program. DDS argued that in leaving the stranger’s home, Mercy was refusing DDS services.
Meanwhile, both Karen and Mercy’s therapist filed complaints with the Disabled Persons Protection Commission (DPPC) of abuse of Mercy by Venture. However, a subsequent review by DDS did not result in any findings concerning those charges, indicating that the charges were not investigated.
In July 2022, Mercy appealed her disenrollment to DDS. In February of this year, a DDS-appointed hearing officer upheld the disenrollment, but left the door open for Mercy to “work with” the DDS area office to reapply for shared-living services.
Melanie Cruz, Mercy’s service coordinator supervisor in the DDS Worcester area office, subsequently told Mercy she would refer her to a new shared-living contract agency. But Cruz then texted Mercy in March to say she would have to undergo an eligibility “reprioritization” before she could be “considered for residential services.”
By that time, Mercy had been without a shared living program for more than a year after Venture’s termination of Karen’s contract. Mercy has nevertheless continued to live with Karen, who continued to provide shared-living services to her without financial compensation.
DDS regulations appear to have been violated: No eligibility team and no notice
DDS regulations (115 CMR 6.02(3)) require that eligibility for DDS services be determined by “regional eligibility teams,” each of which must be comprised of a licensed doctoral level psychologist, a social worker with a master’s degree, and a “Department eligibility specialist.”
Karen said the eligibility reassessment of Mercy was carried out in April by Cruz, the service coordinator supervisor, who is employed by the Area Office. In an email I sent on Tuesday to DDS Commissioner Jane Ryder, I stated that having Cruz undertake the reassessment, on its face, does not appear to comply with the regulations.
In addition, the regulations (115 CMR 6.03 and 6.08) state that after completion of an eligibility determination or redetermination, the regional eligibility team must notify the individual of the determination and their right to appeal within 30 days after receiving the notice.
However, Karen said that as of today (August 4) Mercy still had not received a notice of the reassessment. On Tuesday, Mercy texted Cruz, asking for a copy of the reassessment. But Mercy has not received a response from her, Karen said.
Cruz had previously testified against Mercy
In questioning Cruz’s rationale for reassessing Mercy’s level of functioning, Karen also noted that Cruz had previously testified in favor of Mercy’s disenrollment in a November 2022 DDS hearing on Mercy’s appeal. Karen said she believes Cruz was therefore facing a conflict of interest in subsequently reassessing Mercy for shared-living services.
Reassessment reportedly states that Mercy was without services for the past year
Karen was informed that one of the reasons cited by Cruz for the increase in Mercy’s level of functioning was that Mercy was living “unsupported for the past year.” If that statement is actually contained in Cruz’s reassessment, it is untrue. Karen, in fact, continued to support Mercy over the past year. The only difference between that period and the period prior to it is that Karen was not paid over the past year for caring for Mercy.
It appears that the DDS area office has mishandled this case from the start and has carried out what appears to be a vendetta against Mercy and Karen for having reported the alleged abuse against Mercy.
At the very least, we think, a properly constituted regional eligibility team that is independent of the DDS Worcester area office should assess Mercy’s functional level for shared-living services. DDS should then approve a realistic payment schedule to Karen for providing those services.
DDS hearing officer won’t allow COFAR blog post to be submitted as evidence in couple’s effort to place son at the Wrentham Center
A Department of Developmental Services (DDS) hearing officer has denied a couple’s request to submit a COFAR blog post to him for consideration as part of their appeal to place their son at the Wrentham Developmental Center.
The June 15 COFAR post claims, among other things, that federal law requires DDS to give individuals a choice of care in a facility such as the Wrentham Center. DDS primarily informs people looking for residential settings only of the existence of corporate provider-run group homes.
The couple, who have asked that their names not be used, requested that they be allowed to submit COFAR’s post in rebuttal to a DDS closing brief in the case. The DDS brief claimed that people with intellectual disabilities do not have a right to care at facilities such as Wrentham.
Last October, the couple appealed their son’s DDS Individual Support Plan (ISP) to the Department in an effort to have him placed at Wrentham. DDS held a hearing on the couple’s appeal on April 21 after the Department denied the requested placement. Under the ISP appeal regulations, the Department appointed a hearing officer in the couple’s case.
The hearing officer, William O’Connell, has not yet issued a decision on the appeal. His July 11 order denying consideration of the June 15 COFAR blog post stated that the post was submitted after his June 2 deadline for closing submissions in the case. However, O’Connell had previously extended that deadline to allow DDS to submit its closing brief on June 5.
Despite submitting its own brief under that extension, DDS subsequently opposed the couple’s request to have the COFAR rebuttal similarly entered into the record.
Hearing officer’s ruling is taken almost verbatim from DDS attorney’s objection
DDS’s written objection to the COFAR post described the post as “a late Rebuttal to the Department’s closing argument and brief,” and as “new evidence and argument that was not presented during the hearing or in the parties’ final closings.”
The DDS objection then stated that, “The (COFAR) evidence, a public opinion blog post, is of little probative value, and would likely not be admissible even if it were not filed late.”
Key portions of O’Connell’s written order about the COFAR blog post appear to have been taken almost word-for-word from DDS’s objection. O’Connell stated in his July 11 order that:
The (couple) submitted the rebuttal (COFAR post) well after the deadline for closing submissions had passed. Notwithstanding that the record was closed for evidentiary purposes at the close of the hearing on April 21, the proposed rebuttal to the DDS closing brief that the (couple) are attempting to submit as evidence and argument is a public opinion blog that is not probative and has no foundation for admissibility” (my emphasis).
Couple believes the hearing officer is biased against them
The couple maintain that O’Connell’s reliance in his order on the language in the DDS objection to the blog post appears to be evidence of a bias on his part in favor of DDS. They noted that he didn’t dispute any claim made in the post itself, but simply repeated DDS’s assertions about it.
The couple, who were not represented at the hearing by an attorney, also contended that O’Connell treated them with impatience during the April 21 hearing, and was deferential to DDS. “During the hearing, the hearing officer interrupted me several times and asked me to ‘get to the point,’” the wife said. “However, the DDS attorney was able to say her piece without interruption.”
The couple said they feel their case was “quite strong” at the hearing. But they said they are so certain their appeal will ultimately be denied by O’Connell that they are already planning their next move, which will be to take their case to state Superior Court to get their son into Wrentham.
If the couple are right about O’Connell’s likely decision, it will be interesting to see whether he primarily relies on the DDS closing brief in writing that decision, as he did with their request to submit our blog post into the record.
Unclear why DDS controls ISP appeal hearings
As noted above, DDS is in charge of the ISP appeal process, and even appoints the hearing officer who issues a recommended decision in each case. The final decision on the appeal is made by the DDS commissioner. We would agree that this creates, at best, a perception that the process is biased in favor of the Department.
We think the ISP appeal process should be decided by the independent Division of Administrative Law Appeals (DALA), which conducts appeal hearings for more than 20 state agencies, including the Disabled Persons Protection Commission (DPPC).
Hearing officer provided no support for claim that COFAR post was inadmissible
O’Connell stated that his order denying admission of the COFAR post was issued pursuant to the Massachusetts statute and regulations on adjudicatory practice and procedure (M.G.L. 30A and 801 CMR 1.02.)
We believe, however, that those rules would allow the post to be entered into the case record at any time, just as the DDS closing brief was entered after the hearing officer’s arbitrary closing date for submissions.
The regulations that O’Connell cited as underlying his ruling (801 CMR 1.02) constitute “informal rules” of adjudicatory procedure in Massachusetts.
Also, M.G.L.c. 30A, s. 11 states, with regard to the admissibility of evidence, that:
Unless otherwise provided by any law, agencies need not observe the rules of evidence observed by courts, but shall observe the rules of privilege recognized by law. Evidence may be admitted and given probative effect only if it is the kind of evidence on which reasonable persons are accustomed to rely in the conduct of serious affairs. Agencies may exclude unduly repetitious evidence, whether offered on direct examination or cross-examination of witnesses.
(3) Every party shall have the right to call and examine witnesses, to introduce exhibits, to cross-examine witnesses who testify, and to submit rebuttal evidence.
As we argue below, the COFAR blog post was intended to present evidence on which reasonable persons would rely in the conduct of serious affairs. It was not intended, as DDS and O’Connell casually dismissed it, to be a “public opinion blog.”
Both DDS and the hearing officer mischaracterized the nature of the COFAR blog post
As noted above, both DDS and O’Connell characterized the COFAR blog post as “a public opinion blog that is not probative and has no foundation for admissibility.”
However, the blog post directly rebutted the DDS assertion in its closing brief that federal law does not give persons with intellectual or developmental disabilities the right to placement at either the Wrentham Developmental Center or the Hogan Regional Center.
The post presented new evidence in the case regarding a succession of administrations in Massachusetts, which have allowed the residential population or census at the Wrentham and Hogan centers to decline. This decline, the post noted, has been due to DDS’s apparent policies of denying admission to those facilities to most persons who ask for it, and failing to inform persons looking for placements that those facilities exist as residential options.
We think the blog post therefore helped explain the almost automatic denial by DDS of the couple’s request to have their son placed at Wrentham.
Secondly, the blog post directly rebutted a statement in the DDS closing brief that the couple’s son currently lives in “a less restrictive community-based setting” than he would in an Intermediate Care Facility (ICF) such as the Wrentham Center.
The blog post then presented evidence that directly rebutted the DDS closing brief’s statement that the couple’s son “…has been successfully supported in the community for 13 years,” and that “he is well served by his community-based services and supports.”
Finally, the blog post revealed a misrepresentation in the DDS closing brief of the U.S. Supreme Court’s 1999 Olmstead v. L.C. decision with regard to institutional care. The post explained how the brief had wrongly implied that the Court had held that in all cases, individuals should be placed in community-based rather than institutional settings.
The statute that governs adjudicatory practice and procedure (M.G.L. c.30A, s.11), states that:
In all cases of delayed statement, or where subsequent amendment of the issues is necessary, sufficient time shall be allowed after full statement or amendment to afford all parties reasonable opportunity to prepare and present evidence and argument respecting the issues.
In our view, the couple were denied a reasonable opportunity to present evidence and argument in response to the evidence and argument in the DDS closing brief.
For all of the reasons discussed above, we believe the hearing officer erred in his denial of the couple’s request that the COFAR blog post be entered into evidence in their appeal.
Couple with disabled son who complained about second-hand cigarette smoke in their apartment are facing possible eviction
A couple that complained that second-hand cigarette smoke from another unit in their Kingston housing complex was harming the health of their disabled son are facing the possibility of eviction from their apartment.
Nicole and Cang Duong have accused the Alexan Kingston housing complex management and its attorneys of delaying their application for a state program that would help them keep up with their monthly rent.
As a result, Nicole Duong said, their RAFT rental assistance application expired on July 13, increasing their chance of eviction. They reapplied for the assistance on Monday (July 17).
The Duongs maintain that even though they took the proper steps to obtain rental assistance, they may still face eviction because of the application processing delay.
We reported on July 5 that the Duongs had complained to the management in May of a cigarette smoke odor that was coming from the air ducts in their apartment. Their 3-year-old son Caleb has Down Syndrome and severe obstructive sleep apnea. Cigarette smoke is particularly dangerous to his health, Nicole said.
Nicole said that while the housing complex management did subsequently inspect the ventilation system in their apartment and placed filters in the air ducts in response to their concerns, the management never sent anyone to their unit to investigate the origin of the alleged cigarette smoke. Yet, the complex has a strict no-smoking policy that applies to all areas, inside and outside.
In fact, the management suggested that the Duongs themselves should move out of the complex. The Duongs believe this is a violation of federal and state fair housing laws, which forbid discrimination against persons with disabilities.
Management’s lawyers allegedly “dragged their feet” in approving a rental payment plan
Nicole said she and her husband had been struggling to pay the rent on their apartment, and first applied for the RAFT assistance on June 7. She said that in compliance with the RAFT rules, they did not pay their June or July rent while the original RAFT application was being processed.
The Duongs’ monthly rent for their two-bedroom apartment, which is classified as an affordable rental unit, is $2,256.
Nicole said the approval of the RAFT assistance by the state Department of Housing depended on the family reaching agreement with the Alexan Kingston management by July 13 on a payment plan for two months’ worth of back rent.
Emails show that the Housing Department repeatedly asked Nicole earlier this month to provide a signed rental payment agreement under which the Duongs would pay $903 toward the overdue rent, and the RAFT program would pay the remainder of the $4,512 in back rent.
The first request from the Housing Department for the agreement was on July 6. An email from the Department to Nicole stated that the agreement must be submitted by July 13 “or your application process will be discontinued, and you will need to begin the application process again.”
Nicole said that while she provided the suggested RAFT agreement amount to the apartment management, the management turned the matter over to its law firm, and the law firm didn’t immediately respond. Emails show Nicole asked the apartment management and their attorneys for a copy of such an agreement on July 10 and July 11.
On July 10, the Alexan Kingston resident manager responded to Nicole, saying that he had contacted the management attorneys “to follow up on this item for us. I’ll touch base with them tomorrow as I know it’s very time sensitive.”
On July 11 at 4:53 p.m., still not having received a proposed agreement, Nicole emailed a member of the law firm, saying the RAFT application was scheduled to “time out” or expire two days later, and that a response from the management “needs to be done ASAP.”
The law firm finally sent an email with the proposed agreement to the Duongs at 7:10 p.m. on July 12, the day before the expiration of the original RAFT application. Nicole maintained that the law firm’s proposed agreement was unacceptable to them, but that it was too late in the day to contact either the management or the law firm about it.
Management’s proposed agreement included extra charges
Although the Duongs owed $4,512 in back rent, the law firm’s proposed agreement would require them to use their RAFT assistance to pay a total of $5,183, including $293 in “court costs” and $378 in “utilities/fees” as of next February 28.
Nicole contends there is no reason for her and her husband to pay court costs because the payment agreement should not require Housing Court involvement. In addition, she said, the utilities/fees cost was not explained in the proposed agreement.
The proposed agreement specified a periodic monthly payment schedule for the Duongs of $115 in addition to their monthly rent payments. The agreement stated that any late payments would constitute a material breach, which would allow eviction proceedings to begin in seven days. The Duongs would also waive their rights to an appeal or trial in the Housing Court.
Nicole said the proposed agreement would shorten the usual eviction notice period from 30 days to those seven days. She also said she and her husband would not want to sign away their right to take their case to the Housing Court.
Waiting for Section 8 placement since 2020
Even though their apartment is classified as affordable, the Duongs said they have been on a waiting list in Massachusetts for a Section 8 housing voucher since 2020.
Nicole said their rent constitutes 65% of their total income from her husband Cang’s job. She said her husband works overnight from 6 p.m. to 6 a.m., and that she needs to stay home to care for her son.
“I’m at the point of a nervous breakdown because I don’t want to lose our home,” she said.
We previously wrote to the housing complex management to urge them to fully investigate complaints from the Duongs and other residents of cigarette smoke odors in their apartments. We have now written them again to urge them to commit to reaching a timely payment agreement with the family that will cover their rental costs only.
We hope the apartment management will work to ensure that this family is not forced into homelessness.
We still need the subminimum wage and work opportunities in day programs for people with intellectual disabilities
We are hoping we can help the members of the Massachusetts congressional delegation understand the severity of the problem caused by the lack of meaningful employment opportunities for people with intellectual and developmental disabilities (I/DD) in this state.
On June 27, we held a Zoom meeting with an aide to Senator Elizabeth Warren to discuss that problem and the decline of the state’s two remaining Intermediate Care Facilities (ICFs) as options for residential services. That latter issue will be a subject for another blog post.
Among those attending was Jim Durkin, legislative director for AFSCME Council 93 in Boston. Also attending was Patty Garrity, whose brother Mark, is one of potentially thousands of clients of the Department of Developmental Services (DDS) who are facing a lack of meaningful work activities in their day programs.
Unfortunately, when it comes to providing employment for people with I/DD, most members of Congress appear to be heading in the wrong direction. For years, members of the state delegation have supported legislation that we think would effectively discourage such opportunities.
While Senator Warren, in particular, has been a strong voice for workers, she has also unfortunately been out front in mistakenly opposing the payment of subminimum wages to people with disabilities in congregate and other work settings.
We strongly support the payment of at least a $15-per-hour minimum wage to all persons, including disabled persons, who want to be paid that amount or more. We have, in fact, called for a minimum $25-an-hour wage for direct-care workers in the DDS system.
But what even many advocates for the disabled don’t realize is that there are some people with I/DD who don’t seek or choose payment of a minimum wage even though they do want to work. Those people cannot perform the level of work necessary in most mainstream job settings to receive a minimum wage; and therefore, they face the prospect of having no work at all if employers are not allowed to pay them a subminimum wage.
As Patty Garrity told Senator Warren’s aide in our Zoom meeting, the lack of viable work opportunities for Mark began after his then sheltered workshop was closed along with the rest of the remaining workshops in Massachusetts in 2016. Mark was one of thousands of people whose workshops became day programs, which no longer provided them with the piecework that they used to do.
Patty maintained that Mark had taken pride in that previous work. The fact that he wasn’t paid at the minimum wage rate was immaterial to him because he doesn’t understand the value of money.
“My brother lost out with the closure of his sheltered workshop, and he is continuing to lose out,” Patty said. “He’s not a minimum wage candidate. There is now a big gap in Mark’s life.”
Staffing shortage in day programs making the problem worse
That gap for Mark is only likely to get worse because of the ongoing staffing shortage in day and other programs funded by DDS. Many of these programs offer few activities of any kind.
Even the Arc of Massachusetts, a key proponent of the closures of the sheltered workshops, now acknowledges that the staffing shortage is a cause of a “systemic failure” in the DDS system in providing services. Maura Sullivan, a senior Mass Arc official, was quoted in April as saying:
There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases.
As Sullivan acknowledged, the underpayment of staff is a key cause of the staffing shortage. It is not DDS clients who choose subminimum wages who are underpaid; rather it is their caregivers who should be paid more.
Two bills in Congress would promote work opportunities
We are urging members of the Massachusetts delegation to sign onto two bills, which would promote work opportunities for persons with I/DD. So far, no member of the Massachusetts congressional delegation has signed onto either bill.
Subminimum wage bill
The first bill (H.R.1296) would give an individual a choice whether to accept employment at a subminimum wage.
As Patty Garrity noted, her brother Mark cannot perform at the level most employers are looking for in providing a minimum wage. Patty maintains that it is also not Mark’s choice to work in an integrated environment.
We think an intellectually disabled client’s choice is key in this matter as it is in virtually all aspects of their care. In fact, DDS regulations state that programs and services are intended “to promote self determination and freedom of choice to the individual’s fullest capability…” (115 CMR 5.03) (my emphasis).
In seeking to eliminate subminimum wages, lawmakers would take away a choice for clients such as Mark in addition to taking away employment opportunities for them. Those lawmakers are effectively arguing that it is better for those clients to have nothing to do than to take a job that pays less than the minimum wage. Yet doing nothing all day long is clearly not Mark’s preference or choice.
Integrated employment bill
The second bill we are supporting (H.R. 553) states that a location in which an individual is able to interact with “colleagues, vendors, customers, and superiors…” would be considered to be a “competitive, integrated employment” setting.
This legislative proposal runs counter to a long-held but misinformed ideology that all persons with I/DD can successfully participate in employment activities alongside persons without cognitive disabilities. That ideology has also been a basis for the closures of sheltered workshops in Massachusetts and other states.
According to the ideology, the workshops were segregated settings because most or all of the participants generally had I/DD. That label, however, makes little sense in our view because most clients in sheltered workshops were there by choice.
Current federal law, which H.553 would change, states that an integrated employment location must be one in which the disabled employee “interacts with other persons who are not individuals with disabilities (not including supervisory personnel or individuals who are providing services to such employee)…” (my emphasis).
H.R. 553 would allow interactions with those supervisory personnel and service providers to count as integrated interactions.
The current federal law prevents work activities from being reintroduced to day programs because those settings are not considered to provide opportunities for competitive, integrated employment. As a result, people like Mark languish in them.
While we understand that the payment of a minimum wage stems from an important principle of social equity, we hope the members of our congressional delegation would agree that not all individuals will necessarily benefit from the universal implementation of every such principle.
Individual choice is also a principle of social equity. If it is possible to give individuals a choice among wage policies without harming others, it can be a win-win situation for all.
Parents battle housing complex over effect of second-hand smoke on their disabled child
For more than a month, Nicole and Cang Duong smelled cigarette smoke in the ventilation ducts in their apartment in a housing complex in Kingston.
They were concerned about it mainly because their 3-year-old son Caleb has Down Syndrome and severe obstructive sleep apnea. Cigarette smoke is particularly dangerous to his health.
On May 24, Caleb needed three major surgeries – tubes inserted in his ears, and his tonsils and adenoids extracted. The cigarette smoke odor was evident while he was back home recovering, Nicole said.
Nicole, Caleb, and Cang Duong.
Nicole said that while the housing complex management did subsequently inspect the ventilation system in their apartment and placed filters in the air ducts in response to their concerns, the management never sent anyone to their unit to investigate the origin of the alleged cigarette smoke. Yet, the complex has a strict no-smoking policy that applies to all areas, inside and outside.
In fact, the management suggested that the Duongs themselves should move out of the complex. The Duongs believe this is a violation of federal and state fair housing laws, which forbid discrimination against persons with disabilities.
Housing discrimination includes failing or refusing to make reasonable accommodations for tenants with disabilities, according to the Massachusetts government website.
Cigarette smoke believed to be coming from unit above
The Duongs moved into the Alexan Kingston housing complex on March 18. Their apartment is classified as an affordable rental unit.
Nicole said new people moved into the unit directly above them on May 13. She said almost immediately, she and her husband began to smell cigarette smoke in their bedroom and then in the living room. Then their oldest son, Joseph, who is 19, smelled it in his bedroom.
Nicole said that on May 13, she first texted the management about the smoke odor. On May 16, after some initial correspondence, the management sent a text to the Duongs suggesting they consider moving out of the complex:
Based on the information and concerns you just provided…we are concerned that maybe the Alexan Kingston (housing complex) may not be the best residence for you and your family. We are happy to discuss a lease-break option with you if you decide our apartment community does not meet the needs of your family.
On May 23, Nicole responded in an email to the management, stating that they did not intend to leave the complex, but that they wanted an immediate transfer to another unit within the complex. She stated that in the meantime, she was requesting that the air ducts in their unit be cleaned. That was the day that she and her husband took Caleb to the hospital for the surgeries.
Caleb playing at home.
On May 26, the management did send a maintenance man to inspect the apartment’s air ducts. He found there were no filters in those ducts, and installed some. This was the day after Caleb had come home from the hospital.
At the end of June, Nicole said, the management transferred the upstairs occupants to another apartment in the complex for unspecified reasons. The smoke odor is now gone. But Nicole said she and her husband remain concerned that the problem could happen again.
Contradictory messages from management and attorney
Nicole said that after she requested the transfer to another unit, Jefferey Turk, the management’s attorney, asserted in a June 7 letter to the Duongs that they had failed “to provide any basis for the request to transfer (to another apartment in the housing complex). Your email does not identify any reason you require a transfer or any nexus between any conditions which your son may have and his need to reside elsewhere on the property. As such, until we receive such information, the request cannot be granted.”
At the same time, Turk’s letter seemed to contradict that statement. Its final paragraph started:
Notwithstanding the foregoing, and in an attempt to resolve this matter, my client is willing to offer you a transfer to the next available apartment which is assigned to the affordable housing program and for which you qualify. You will be responsible to move yourself to that new apartment when it is available.
Nicole said that on June 28, another attorney with the management’s law firm texted her, also saying the Duongs would be allowed to transfer to another apartment in the complex. But the attorney stated that in order to do so, the Duongs would have to pay “prorated rent” for the new unit in addition to the full monthly rent on their current unit.
Nicole said she and her husband rejected that offer because it would amount to paying up to half a month of rent for the new unit as of the move-in date, plus the full month for their current unit. She said they are hopeful, for the moment, that they will not need to transfer because the upstairs tenants, who apparently created the odor problem, are no longer there.
Management attorney’s letter appeared to ignore Duongs’ evidence
Turk also maintained in his June 7 letter that the Duongs had not demonstrated that their son is actually disabled. Yet Nicole said they had fully documented their son’s disabilities. Nicole forwarded to us a letter from the state Department of Developmental Services (DDS), which she said she had sent to Turk and to the management. The DDS letter, which was dated June 2, stated that Caleb had met the Department’s eligibility criteria for services to children under five years old.
Also, the Duongs noted that Turk’s June 7 letter itself referred to a report the Duongs had provided him from Quincy Pediatric Associates. That report stated that Caleb had been diagnosed with Trisomy 21, a genetic condition that causes Down Syndrome. The pediatric report also stated that Caleb had been diagnosed with severe obstructive sleep apnea.
Caleb in the ICU after his surgeries in May.
Noise problem
Nicole said there also was a noise problem from the unit above, which disturbed Caleb. He woke up crying one night due to loud, continuous banging or stomping from that apartment. The noise continued from that Friday through Sunday night, and periodically after that.
Nicole said no one from the management office ever came to their apartment to investigate either for the smoke or noise.
No outside investigation
The Duongs said they were unsuccessful in getting any outside authorities to investigate the alleged cigarette smoke odor. The federal Department of Housing and Urban Development (HUD), which manages their affordable rent application, took preliminary information from them about the cigarette odor. But the federal agency closed out the case after 30 days, also without anyone having visited their apartment, Nicole said.
We have written to the management company to urge them to fully investigate complaints from residents such as the Duongs. It is unfortunate that rather than doing such an investigation, the management simply implied that the Duongs should consider leaving. Moreover, we requested that if the Duongs do request a transfer to another apartment, the management should not add an excessive “prorated” rental charge on the new unit.
It is disappointing that both management entities and oversight agencies, such as HUD, which are entrusted with providing housing to persons, many of whom have disabilities, often appear to be indifferent to the wellbeing of the people living in their residential facilities.
DDS wrongly claims federal law does not give individuals the choice of either the Wrentham or Hogan Centers
In a June 5 legal brief, the Department of Developmental Services (DDS) argues that federal law does not give persons with intellectual or developmental disabilities (I/DD) the right to placement at either the Wrentham Developmental Center or the Hogan Regional Center.
We think the Department’s argument in the brief misrepresents federal law, and reflects an unfounded bias among policy makers in Massachusetts against Intermediate Care Facilities (ICFs). The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.
As we argue below, we also think the DDS brief wrongly assumes that group homes necessarily provide their residents with more integration with the surrounding community than do ICFs. That assumption is based on an outdated perception of the way ICFs operate today, and an overly rosy perception of the community-based system.
As we have reported, a succession of administrations has allowed the residential population or census at the Wrentham and Hogan centers to decline. This decline is due to DDS’s apparent policies of denying admission to the ICFs to most persons who ask for it, and failing to inform persons looking for placements that those facilities exist as residential options.
The DDS brief appears to confirm those policies in stating that:
DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.
The DDS legal brief was submitted in response to an appeal to the Department, which was filed by the mother of a man with I/DD who was denied admission to the Wrentham Center. We are withholding the names of the mother and her son, at the mother’s request.
Federal Medicaid law requires a choice of either an ICF or “waiver services”
In our view, the DDS policies regarding admissions to ICFs do 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.
Persons who are found to be eligible for HCBS waiver care have been found to meet the eligibility requirements for ICF-level care.
The HCBS waiver was established to allow states to develop group homes as alternatives to institutional care. However, the Medicaid statute did not abolish institutional or ICF care. In fact, the statute states that if a state does include ICFs in its “State Medicaid 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)]
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.)
The DDS brief, therefore, wrongly asserts that, “Federal law does not entitle the Appellant (the mother’s son) to admission to an Intermediate Care Facility.”
DDS brief wrongly assumes ICF settings are necessarily more restrictive than community-based group homes
The DDS brief also states, as a reason for denying admission to the Wrentham Center to the mother’s son in this case, that state regulations require the Department to place individuals “in the least restrictive and most community integrated setting possible.” According to the brief, the son currently lives in “a less restrictive community-based setting” than he would in an ICF such as the Wrentham Center.
But a statement that a community-based setting is necessarily less restrictive than an ICF is an ideological position that ignores the evidence.
This past Sunday, for example, I attended an annual birthday party for a DDS client who lives in a provider-run group home in Northborough. The home is located on a busy road. There is no sidewalk along the road, and only one other home in the area is faintly visible from the client’s residence.
There is no opportunity for the client to walk in the neighborhood around the residence, whereas residents at the Hogan and Wrentham Centers have access to acres of walking and recreational areas on the facility campuses.
While staff in the client’s Northborough group home do take him on trips to restaurants and other community events, those kinds of events are also provided, as our Board member Mitchell Sikora has recently described, to residents of the Wrentham and the Hogan Centers.
We’ve also written many times about restrictions imposed by DDS on visits and other types of contact by family members with residents of provider-run group homes.
The presumption that ICFs are necessarily more restrictive than group homes is based on an outdated characterization of facilities such as the Wrentham and Hogan Centers. Like many proponents of the privatization of DDS services, DDS chooses not to recognize the major improvements in congregate care and conditions that occurred, starting in the 1980s, in Massachusetts and other states as a result of both federal litigation and standards imposed by the Medicate statute.
DDS brief takes a we-know-best position
In addition to the questionable assumption it makes with regard to the level of restrictiveness of ICF care, the DDS brief also appears to accept, without question, that care and conditions in provider-run group homes are uniformly good.
The brief noted, for instance, that a DDS regional director had testified during a hearing in the case that the mother’s son “would not likely receive a greater benefit from admission to the ICF than he receives in the community.”
According to the brief, the son:
…has been successfully supported in the community for 13 years, his annual ISP (Individual Support Plan) assessments indicate that he continues to make progress toward his ISP goals, and he is well served by his community-based services and supports.
Conditions are not better in the community
Again, the DDS statements about what is best for an individual appear to be based on an ideological position that community-based placement options are always appropriate and available. In this case, however, the mother had sought to place her son at the Wrentham Center only after his group home provider had stated its intention to evict him from the residence.
The mother told us that in a meeting last year with DDS and provider officials, a provider manager cited two reasons for moving to evict her son. One was that her son had had a toileting accident on the deck of the group home, and that the mother had allegedly failed to notify the staff of the accident. The mother said the second reason was that she had posted a message on Facebook that was allegedly critical of the group home staff.
With regard to the toileting accident, the mother said she had taken her son back to the house after a planned outing, and that her son had the accident because the home was locked at the time and no one was there to let him in. Her son has Crohn’s Disease. The mother also said her son had also been physically abused on at least two occasions at the provider’s day habilitation facility.
Meanwhile, corporate group home and day program providers themselves in Massachusetts acknowledge that care and conditions in the DDS community-based system have been getting steadily worse.
In our view, all of this calls into question DDS’s assertion in the brief that the son in this case has been “successfully supported in the community for 13 years.”
DDS misrepresents the Olmstead Supreme Court decision
Finally, the DDS brief employs a common misrepresentation of the U.S. Supreme Court’s 1999 Olmstead v. L.C. decision with regard to institutional care. The brief wrongly implies that the Court held that in all cases, individuals should be placed in community-based rather than institutional settings. In fact, the Court held in Olmstead that three conditions must be met in order for persons to be placed in community-based care:
- The State’s treatment professionals determine that community-based placement is appropriate,
- The “affected persons” do not oppose such placement, and
- The community placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
The DDS brief, in arguing that Olmstead does not support the placement of the woman’s son at the Wrentham Center, cited only the first of the three conditions above. But all three conditions must hold under Olmstead in order to justify a placement in the community; and, clearly, the second condition doesn’t hold in this case — the affected persons do oppose continued placement in the community-based system.
In sum, the DDS closing brief in this case appears to provide the clearest indication we’ve seen of DDS’s reasoning and its policies with regard to admissions to the remaining ICFs in Massachusetts. It is clear to us that that reasoning and those policies are based on misinterpretations both of federal law and the history of congregate care for persons with I/DD in this state.
Unless the case can be made to key legislators and policy makers in Massachusetts that all family members and guardians should have the right to choose ICFs as residential options for their loved ones, the Wrentham and Hogan Centers will eventually be closed. If that happens, yet another critical piece of the fabric of care for many of the most vulnerable people in this state will be lost.
COFAR blog 