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.
Retired Superior and Appeals Court judge writes about the care his brother receives at the Wrentham Developmental Center
[Editor’s Note: As we have previously reported, the number of residents remaining at the Wrentham Developmental Center and the Hogan Regional Center has continued to drop. As a result, these remaining, vitally important Intermediate Care Facilities (ICFs) in Massachusetts will eventually close if that decline is allowed to continue.
Mitchell Sikora, a member of COFAR’s Board of Directors, wrote the essay below about the importance of the Wrentham Center to his brother Stephen and himself, and submitted it to a member of U.S. Senator Ed Markey’s staff. We met last week on Zoom with one of the senator’s staff members to discuss our concerns about the future of the ICFs.
Mitch, 78, is a Massachusetts attorney and served as an assistant state attorney general for seven years; a private legal practitioner for 17 years; a justice of the Massachusetts Superior Court for 10 years; and a justice of the Massachusetts Appeals Court for 8 years. Since reaching the mandatory retirement at age 70, he has served as a voluntary mediator in the Superior Court.
Mitch and Stephen Sikora
We think Mitch’s account of the care that his brother receives at the Wrentham Center offers a clear explanation as to why ICFs are so important, and why eliminating those facilities as an option for care will be disastrous in Massachusetts.
It costs money to provide all of the specialists at Wrentham who care for Stephen and his fellow residents. But as we have seen, the closures of four of the six remaining ICFs in Massachusetts since 2012 has not resulted in a promised savings to the state. Over the past decade, the corporate provider-run group home line item in the state budget has grown from $760 million to $1.6 billion.
Moreover, We think Mitch’s list of recreational activities, both on-and-off-campus, that are provided to the residents at Wrentham debunks the myth that congregate-care facilities such as this one are institutional in character and warehouse or segregate those clients.]
My experience with ICFs in Massachusetts
By Mitchell Sikora
I am writing to report my experience with, and my support of, the continued operation of the remaining two ICFs for developmentally disabled residents of the commonwealth: the Wrentham Developmental Center in southeastern Massachusetts and the Hogan Regional Center in northeastern Massachusetts.
My younger brother Stephen, now 72 years old, has lived since age 10 at the Wrentham facility. The Center (originally named the Wrentham State School) has provided him with protection, care, affection, and community, especially since the major upgrade of all of the then Massachusetts state schools by federal district court litigation in the 1970s and 1980s, known collectively as the Ricci case and consent decree.
Since then, the Wrentham Center has functioned effectively as a campus village of concentrated human and physical resources benefitting Stephen enormously as he has aged.
I will do my best to describe the Wrentham Center’s human resources, its physical resources, and its communal benefits.
Human resources
The following personnel are assigned at the Wrentham Center to Stephen and each resident. A medical doctor oversees his health status. A nurse practitioner examines him promptly for any symptoms of illness. A daily staff nurse administers his medications and monitors his appearance.
His assigned social worker regularly visits him in his cottage dormitory and in socialization classes, and communicates her observations to us (his brother and sister).
A physical education specialist provides him with exercise at the Center’s gymnasium and swimming pool. A physical therapist has treated him for multiple orthopedic problems over the last 20 years, including knee replacements from arthritis, and hip and pelvic fractures from falls.
Vocational instructors have trained him to perform (to his own satisfaction) simple useful on-campus work, such as the collection and delivery of recyclable papers and objects. A recreational therapist periodically takes him for off-campus trips and treats, such as a stop at MacDonald’s. A psychologist responds to any episodes of behavioral or mood problems. A nutritionist watches his diet.
The Center also supports a “service specialist” program in which retired employees contract with families to take residents for off-campus rides or on trips to the families’ homes. Typically, the service specialists are familiar with the resident from years of work at the Center. With the fading of the COVID pandemic, the service specialist process can now resume.
Once each year, the Center must conduct a conference with each family to maintain and update the resident’s ongoing Individual Service Plan (ISP). The continuous Plan describes the resident’s health, activities, progress, problems, goals, needs, and spending objectives for the past and oncoming year. The Plan typically approximates 25 pages. The majority of the personnel enumerated above participate directly in the Conference (conducted by Zoom during the pandemic years) or contribute to the Plan.
As a final word about human resources, I should add that over the past 20 years, the Wrentham Center has received the dedicated service of three longtime facility directors and the involvement of devoted members of the Wrentham Family Association.
Physical resources
The Wrentham Center occupies a campus landscape of approximately 20 square blocks surrounded largely by open fields. The grounds include walking paths and picnic tables. The residents live in large cottages or small dormitories, each with a capacity of six to ten occupants.
Each resident has his or her own room. The communal bathrooms (with advanced shower facilities), kitchen, dining, and TV rooms are large and clean. Direct care workers are present at all times.
The campus contains a freestanding health care facility, the May Clinic, comprised of about 10 beds, three or four fulltime nurses, and visiting physicians. The Tufts Dental School maintains an office in the clinic.
The Wrentham Center has standing relationships with a number of hospitals, including New England Baptist for orthopedic care, and Brigham and Women’s Hospital, Sturdy Memorial Hospital, and Norwood Hospital for urgent and general care.
The campus buildings include a modern school structure of classrooms and meeting rooms; a gymnasium; a swimming pool; a canteen/snack bar; and two administrative buildings. Eight to 10 pre-1980s brick dormitories now long-abandoned remain scattered across the campus. The general setting is expansive and tranquil.
Communal benefits
A number of activities get the residents up and out of the cottage or dormitory:
- Physical ed classes at the gymnasium and pool. Classes at the school building in adult education, vocational education, and speaking skills.
- Day trips off campus to recreational parks, sports events, and the inevitable snack shops.
- The campus-wide Christmas decorations and party.
- A campus-wide spring celebration.
- A late summer week long country fair on campus conducted by a professional amusement company.
- Summer vacations of 3 or 4 days off campus conducted by staff and financed by families able to do so, or by the Center.
- The above mentioned service specialist program.
In all these activities the continuity and affection of the Center’s employees play a crucial role. Some of my brother’s caregivers have known and served him for more than 30 years.
My apologies for the length and detail of this message. I hope that it demonstrates the role of a well functioning ICF as a healthy community and home for its residents. It can serve as a unique concentration of both professional competence and elemental compassion.
A while back an old adage made a comeback: “It takes a village to raise a child.” I have thought that it applies even more so to the care of the developmentally disabled. At the very least, the families of the disabled deserve the informed choice of placement of their member in a well functioning ICF.
Since the great upgrade of the ICF system in the 1980s, the state has progressively reduced information made available to the public about the availability of the ICFs so that now only two ICFs remain in operation in Massachusetts. Those two facilities are subject to declining enrollment.
Post-Ricci administrations appear to retain a pre-Ricci vision of the care and conditions in the ICFs. That approach appears to have become dogmatic policy. It seems to me wrong upon several grounds. First, it is factually inaccurate and outdated. Second, it deprives applicant families of the opportunity of an informed placement choice. Third, it appears to violate requirements of both federal and state law that individuals and their families and guardians be able to make informed decisions about all available placements.
The federal Medicaid law and regulations require that individuals determined to be likely to need ICF-level care be informed of “the feasible alternatives” to that care, but also “given the choice of either institutional or home and community-based services.” [42 U.S.C.§ 1396n, and 42 C.F.R. § 441.302(d)].
However, as COFAR has often reported, families and guardians are generally not informed of the existence of the Wrentham or Hogan Centers. As such, those families and guardians are not being given the information or choices specified by the federal requirements.
Similarly, the Massachusetts Department of Developmental Services (DDS) regulations call for “informed consent” for admission to any departmental facility, including an ICF or group home. [115 CMR 3.04.] I suspect that additional sources of law and context would fortify the inherently fair and rational standard of informed consent and choice.
Faithful compliance with the legal standard of informed choice requires DDS to provide a family in need of a placement with a clear and explicit description of the ICFs and their resources and activities, and, if requested, with visiting tours of those facilities.
I hope that these thoughts are useful. Please do not hesitate to contact me for more information. Email: mitchsikora@gmail.com.
Father points out the personal impact of our neglect of adequate wages for caregivers
While the state provides almost $2 billion a year to privately run corporations to deliver a wide range of services to people with developmental disabilities, policy makers and legislators have historically been reluctant to fund even small increases in wages to actual caregivers.
In the case of parents of children with disabilities, the state provides no financial remuneration at all. At least one of those parents would like to see that changed.
We’ve written before about John Summers and his efforts to care for his non-speaking, autistic son Misha. In an opinion piece in The Boston Globe on May 18, Summers talks about the difficulty he has had in finding Personal Care Attendants (PCAs) to come to his home to help him provide daily care to Misha.
That difficulty Summers is facing is due to an ongoing staffing shortage that has afflicted virtually every facet of the state’s human services system since the start of the COVID pandemic some three years ago.
But there’s more to it than the lack of available staff. Summers, as a caregiver himself to his disabled son, receives no financial help from the state to do that work even though caring for Misha required him to leave his job and has dropped his income below the poverty line.
We have on many occasions called for adequate wages, benefits, and training for direct caregivers in the provider-run group home system funded by the Department of Developmental Services (DDS). The same neglect of the caregiver role exists when it comes to the funding of services to people living in their private homes, which is ostensibly where the state wants disabled people to live.
As Summers notes, “the concept (of PCA services) reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care.” Yet Summers contends the system as practiced today “cheats “ caregivers like himself.
Parents should be paid as caregivers
MassHealth allows consumers to hire just about anyone they want, including friends and relatives, to provide personal care services to themselves or others in their homes. But so-called “legally responsible relatives,” particularly parents, are barred from receiving state funding for caregiving.
As Summers points out in his article in the Globe, payment to legally responsible relatives is prohibited by the federal Medicaid law. But the state’s Home and Community Based Services (HCBS) waiver allows for the development of state programs that don’t meet specified Medicaid requirements. Payment of parents as caregivers is one such practice that can be permitted under the waiver. So far, however, MassHealth has not sought such permission from the federal government.
According to Summers, state legislators have filed bills since 2015 to allow legally responsible relatives and guardians to be paid for caregiving services. One such bill, S.775, is now before the Legislature’s Health Care Financing Committee.
Governor Healey, however, could act as well to seek such a waiver. Given the ongoing staffing shortage among PCAs and other caregivers, it would make a lot of sense to do so.
Governor labels PCA staffing shortage a priority
Summers points out that Governor Healey has pledged to place the “crisis-level” staffing shortages in the MassHealth Personal Care Attendant Program at the “top of her list.”
It is currently unknown, however, how many of the tens of thousands of persons who are enrolled in the state’s PCA program aren’t receiving PCA assistance due to the staffing shortages. The Healey administration needs to get a handle on that number for a number of reasons.
State funding for PCAs unspent
Summers, for instance, provided us with data he received from MassHealth on May 23, after he had filed a Public Records request for it. The data show the state appropriated more than $432 million in funding for personal care attendant services between 2012 and 2022 that was never spent, apparently because of a lack of available PCAs.
There is a keen irony here. More PCAs would become available if they were paid a living wage for their work. Instead, they are paid just $18 an hour, pursuant to a recent collective bargaining agreement.
The irony is that the $432 million in unspent funds implies there is enough money to boost the pay of caregivers in the human services system. While we have called for a raise to $25 an hour, Summers has suggested $50. So far, no one seems to have information on how much money is available or actually needed to fully address the direct-care wage problem.
Bureaucratic, privatized structure
What the state has done has been to perpetuate a privatized bureaucracy to administer the PCA program, just as it has built a largely privatized group home system funded by DDS. Summers believes the bureaucratic hurdles that the state has imposed have further discouraged people from applying to become PCAs and have led many to leave that profession.
As Summers points out, PCAs are paid though Tempus Unlimited, Inc., a private “fiscal intermediary.” Those workers will soon have to submit to a potentially intrusive process called Electronic Visit Verification, which is administered by Optum, another private firm.
It seems the state and federal governments are using the Electronic Visit Verification system to target PCAs for potential fraud. But are individual PCAs really committing most of that fraud, or does PCA fraud primarily take the form of improper billing by managers of the PCA provider companies? As usual, the direct care workers get few of the benefits of the system in which they work, but incur most of the blame. It’s apparently good politics.
Misplaced priorities
In sum, it appears the state has over-funded the PCA line item each year for the past 10 years, apparently due to continuing staffing shortages. Yet, the state could have used that funding each year to raise the hourly wages of the PCAs, which might have helped solve the staffing shortage problem.
There is also clearly more than enough funding available to pay parents such as Summers to enable them to care for their disabled children so that those parents are not forced into poverty.
It is not clear that the state has a handle on the extent of the PCA staffing shortage either or on the extent of potential fraud in the system. Yet, the state has created a privatized, bureaucratic administrative process for its PCA program that appears intended to inconvenience and place the blame on the very people who are the key to making the system work – the parents and caregivers.
We hope that in placing the PCA problems at the top of her list, Governor Healey will recognize and work to correct these misplaced priorities.
After being cleared of abuse, mother continues to face restrictions in contact with her son
More than a year after the state rescinded an abuse charge against Christine Davidson for allegedly having given her son too much Tylenol and cough syrup during a weekend visit home, the Department of Developmental Services (DDS) is continuing to restrict her contact with her son, she says.
Christine said DDS officials and managers of the corporate provider running her son John’s group home in Waltham are continuing to restrict the amount of time on weekends that John can come home to visit her.
Christine’s case appears to fit a pattern in which DDS and its providers have placed restrictions or bans on family contact with loved ones in the DDS system for questionable reasons. (See here, here, here, and here.)
Christine said she has been told by two of the managers of the corporate provider, WCI, Inc., that “it depends on how I behave” as to whether John can stay home with her for more than one night on weekends. She said the implication is that she can’t be trusted in caring for her son, particularly in giving medications to him.
Christine Davidson and her son John
Christine said the continuing lack of trust in her appears to stem from an abuse allegation against her, which the state Disabled Persons Protection Commission (DPPC) had initially determined was “substantiated.” The agency later reversed that determination.
Christine faced the abuse charge after she was unable to wake John up in the morning of June 21, 2021. She called 911 that morning, and John was brought to the Newton Wellesley Hospital emergency room. He quickly recovered after being given oxygen.
In an investigative report issued in October 2021, the DPPC concluded that John’s hypoxemia or low oxygen level had likely been caused by Christine because she had allegedly given him an “undetermined” amount of cough syrup and Tylenol that weekend, and had failed to have him use a prescribed breathing assistance machine at night.
COFAR examined the DPPC’s investigative report and reported in January 2022 that the Tylenol and cough syrup with codeine that Christine had provided her son had been prescribed by his primary care doctor, and that there was no evidence presented by the DPPC that she did not follow the prescriptions. COFAR also noted that the group home had, at the time, failed to deliver the required nighttime breathing equipment for John to Christine’s home or to train her in how to use it.
Christine was represented in appealing the abuse substantiation by Thomas J. Frain, COFAR’s president, who is an attorney.
Following the initial substantiation of the abuse charge in October 2021, all visits to Christine’s home by John were suspended, and all of Christine’s visits to the group home were required to be supervised. John was not even allowed to go home to visit Christine on Christmas in 2021.
But in February 2022, the DPPC, in a rare reversal, essentially agreed with COFAR’s findings, and changed the abuse designation from “substantiated” to “unsubstantiated.” In a letter rescinding the abuse charge, a DPPC assistant general counsel stated that he “(did) not find that the conclusions of the (investigative) Report were supported by the weight of the evidence.”
Home subject to cockroach infestation
Christine has, meanwhile, continued to blow the whistle on allegedly poor care and conditions in the group home. Last year, two medical specialists backed up her claims that her son was not receiving needed physical therapy in the residence and was declining physically there. Her allegations about those issues, however, do not appear to have been investigated by the DPPC.
In February of this year, John’s group home was shut down for a month due to a cockroach infestation, leading DDS to order WCI to assess all of its group homes for “any hazards.” During the shutdown, John and four other residents were relocated to a hotel in Woburn.
Christine said that both she and her son had repeatedly complained to WCI in previous months about the roaches and about other allegedly unhygienic conditions in the residence.
Blame placed on Christine
Christine said John’s clinical team, which includes DDS and provider employees, has continued to treat her as if she is not responsible enough to care for her son without continuing restrictions and supervision.
Christine said that after the group home was reopened in March following the insect infestation, the clinical team permitted John to stay overnight at her home only on one night each weekend. She said the group home staff would drop him off each Saturday at 11 a.m. at her house, and pick him up on Sunday at 7 p.m. Yet, she said, John didn’t want to return to the group home on those Sunday nights.
This past weekend, the clinical team agreed to begin alternating between one-night and two-night weekend visits home for John. But Christine said those decisions have been made without her or John’s input, and that the clinical team does not appear to take John’s preferences into account. The team decisions, she said, “are an insult to John and to me too. I’ve done everything I could for him, all his life.”
Christine said the clinical team decisions are not in writing, but have been conveyed to her by WCI management personnel.
Decisions are made in conjunction with co-guardian
Christine said that while she has no input into the clinical team decisions, a nephew of hers, who was appointed as John’s co-guardian, is regularly consulted in the decision-making process.
Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in what was then a new group home.
In a settlement of the matter, Christine was allowed to remain as co-guardian, and her nephew, George Papastrat, who lives in North Carolina, was appointed as John’s second co-guardian, with all medical and residential decision making powers.
Christine said that whenever she requests changes in John’s placement or asks for increased visitation, she is told by DDS that Papastrat must agree to it. But she said she feels she has no influence on Papastrat.
While Christine may not have formal decision-making power under the co-guardianship decree, it is clear that she has her son’s best interests at heart and that she has always fought for adequate care and services for him. It also appears that the clinical team does not fully understand the severity of the problems with care and conditions in the group home.
We think that at a minimum, the members of John’s clinical team should rethink their presumptions regarding Christine’s ability to care for her son, and she should be consulted in all decisions regarding his care. Moreover, there is no reason, as far as we can see, to continue to impose restrictions on Christine’s contact with her son.
Mass Arc echoes our concern that DDS faces ‘systemic failure’ in providing services
Almost two years ago, we first reported that direct care staffing shortages were causing a potentially serious deterioration in residential and day program services in the Department of Developmental Services (DDS) system.
We have also reported repeatedly that the ongoing staffing shortages have caused worsening conditions in the group home system and a lack of meaningful activities in community-based day programs.
Now, the Arc of Massachusetts — an organization that lobbies for DDS residential and day program providers — is echoing our concerns. GBH News, citing the Arc, reported on April 27 that “up to 3,000 Massachusetts residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields.”
The public radio news outlet quoted Maura Sullivan, a senior Mass Arc official, as saying:
There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases. (my emphasis)
We would emphasize that we believe that thousands of Massachusetts residents are waiting not only for day program services, but for residential placements as well. In her remarks, Sullivan did not refer specifically to day program services, but to a lack of services in general.
The resources may be there
What the Arc isn’t saying is that the corporate providers are well funded in the state budget. The provider residential line item will have grown from $847 million, ten years ago, to more than $1.7 billion, under Governor Healey’s Fiscal Year 2024 budget proposal.
We think there is sufficient funding in the DDS system to provide needed services. It’s just that DDS isn’t using the resources in an optimal way. An example of that is DDS’s neglect of the ICFs and state-operated group homes as potential resources.
We have suggested to families whose loved ones are either receiving substandard services or are waiting for services that they ask DDS for placements in either the state-run Wrentham or Hogan ICFs, or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
While the state has continued to pour money into the corporate provider system, the number of residents in the state’s state-operated group homes and state-run ICFs have continued to drop.
As of the fall of 2021, we heard that state-operated group homes were being closed, and last month, we received records from DDS indicating that those closures were the result of insufficient staffing of corporate provider-run group homes. Yet, the records also indicated that the state-operated group homes continued to have vacancies.
Poor pay of direct care workers not the result of a lack of resources
We agree with the Arc that the human services direct care workforce continues to be grossly underpaid, and that this is a primary reason for the continuing staffing shortages.
Where we disagree with the Arc is that it once again doesn’t appear to us that the problem of low pay for direct care workers is necessarily due to a lack of resources.
The increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We hope the Healey administration is open to a new approach to this problem. The new administration needs to redirect more of the state’s resources to state-run programs, and needs to ensure that those resources get to those who underpin the entire system — the direct care workers.
COFAR blog 