Archive
Proposed commission on former DDS state schools needs to acknowledge upgrades in care
The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.
That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.
At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.
In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.
The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.
For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.
Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.
COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.
We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.
As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”
Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.
The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.
The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.
We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.
In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”
Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”
We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.
Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”
Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”
Commission’s written charge needs to be expanded to recognize ICFs today
In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”
The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.
“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said.
It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.
Families still restricted in visiting loved ones in DDS system even if residents have been vaccinated
Throughout the COVID-19 pandemic, we have questioned overly restrictive and sometimes contradictory family visitation policies imposed by both the Department of Developmental Services (DDS) and its residential providers.
What seems surprising is that now, with most residents in the system apparently having been vaccinated, those restrictive and contradictory policies appear to be continuing.
In response to a query sent to our members last week, several said they were continuing to be sharply restricted or even prohibited entirely from entering group homes in which their loved ones are living. Some of those family members are nevertheless allowed to take the residents home for visits.
As we have reported, while most residents of group homes and developmental centers in the DDS system appear to have been vaccinated, a significant percentage of staff have not been. Yet, the restrictions on visitation or contact appear to be aimed exclusively at family members and guardians of residents.
“To hold families and guardians to a higher standard than direct care is unfair and makes no sense,” said Thomas J. Frain, COFAR Board president. “Family visits at this time should not be any more restrictive than they were before the crisis. But some residential managers are clearly using COVID restrictions as a weapon to control family access to their loved ones.”
In an email sent Monday (May 17) to DDS Commissioner Jane Ryder, I asked why visitation restrictions were still ongoing in residences in which all residents have been vaccinated. Ryder, to date, has not responded.
DDS visitation guidance, dated March 19 of this year, continues to give providers discretion to limit the number of visitors and restrict visits under any circumstances the providers deem pose a threat to safety. The guidance document states that any such restrictions should not be arbitrary.
While the March guidance does allow visitors who are fully vaccinated to meet with vaccinated residents in their rooms, it states that providers must restrict all visitation if any staff are infected or presumed infected within the past 14 days. It apparently doesn’t matter under the policy whether all residents have been vaccinated or not.
Family members and guardians cite arbitrary restrictions
A number of other COFAR members said this past week that they have been subjected to differing and sometimes seemingly arbitrary restrictions on visitation.
Colleen Lutkevich, COFAR executive director, said all residents in her sister’s house on the Wrentham Developmental Center campus have been quarantined from May 11 through May 21 because two staff tested positive for COVID. Yet, all residents have been vaccinated, she said, and none are currently testing positive.
Frain said he, himself, was subjected to what appeared to be an arbitrary restriction by staff after his brother experienced a medical emergency in his group home in March. Frain had entered the residence along with ambulance personnel to attend to his brother.
When the emergency was over, Frain said, he was singled out by two staff members and told he alone must leave by the back door of the residence because he hadn’t been tested on entering for COVID. Frain said he complied with the order, but feels it was unnecessary and was possibly an effort to personally humiliate him as a family member.
One COFAR member said that even though her son has been vaccinated — and she believes all other residents of his group home have been vaccinated as well — she and her husband have not been allowed to enter the residence. Nevertheless, she said, they are allowed to take their son home for overnight visits.
“It makes no sense,” the COFAR member wrote in an email. “At least we can be with him, so I really can’t complain, but it would be nice to see what is going on in the house.”
As is the case with a number of families, the COFAR member said she needs to go through her son’s clothes for the seasonal change to spring. Because of the no-entry restriction, the staff brought his belongings to the backyard. “I cannot bend over,” she wrote, “so it was difficult.”
Yet we were told that in another group home even unvaccinated family members were allowed inside to their loved-one’s bedroom to change his wardrobe to spring.
Another COFAR member, who wanted to change her son’s clothing from winter to spring, said she is currently allowed to enter the residence once a week. She too can take her son home at any time.
Another provider requires a week’s notice prior to visits by family members. In yet another case, visitors are allowed in the house, but only for a maximum of 30 minutes.
COVID infection rates not correlated with restrictions on family visits
State data show the rate of COVID infection in the DDS system among both residents and staff declined earlier this year, reaching lows at the end of March. But since then, as recent weekly online state facility reports show, the decline has stalled, and rates of infection have held steady.
As of May 11, 10 residents and 14 staff in the state-operated group home system continued to test positive for COVID. As of that date, 37 residents in provider-run group homes and an unreported number of staff continued to test positive.
There were as many as 5 deaths among residents in the group home system due to COVID in the seven days prior to May 11. No data on COVID-related deaths are available for staff.
While administration officials have not responded to our requests for comment on the matter, we think the decline in the COVID rate in the DDS system from January through March was largely due to the vaccinations of most of the residents and at least some staff, which began in January.
Although data is lacking, we think the continuing presence of at least some COVID in the system since the end of March may be due to the apparent continuing resistance of a significant number of staff to getting the vaccine.
As far as we can tell, residential DDS providers have continued to impose the same types of restrictions on family visits that they imposed prior to the first vaccinations in January. So, we don’t see that those restrictions as related to the decline in COVID rates since January or to the continuing presence of infection in the system.
It’s time, as Tom Frain said, for DDS to issue new, unambiguous guidance to providers to restore visitation policies to what they were prior to the pandemic.
Stan McDonald, who fought for guardianship and visits from his son, dies
Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.
We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).
Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn.
In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.
In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.
In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen. Their claim appears to be backed up by the district court record and a subsequent police report.
The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call. The nature of the threats was not disclosed. In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother. Stan and Ellen said the punch was accidental.
Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans. He was described in one care plan as “kind and friendly to others,” and as “a polite man.”
While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”
We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.
Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.
Successful advocacy for Andy
While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder resulting in involuntary, repetitive body movements.
Supporters urge restoration of Stan McDonald’s guardianship of Andy
In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”
John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”
And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian.
Guardianship bill
H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.
The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.
If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.
In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).
DDS reports drop in integrated employment of clients in the state from 2019
The Progress Report describes the past year as “incredibly challenging for day and employment providers and the individuals and families they serve.” The report notes that in March 2020, on-site day programs were shut down as a result of the pandemic, and were reopened in July under strict social distancing rules.
The DDS day program line item in the state budget is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.
The Progress Report states that mainstream workplaces also shut down or operated at reduced capacities during Fiscal ’20 and ’21, and stated that those shutdowns and reductions limited the number of individual and group-supported employment opportunities available.
Nevertheless, the Progress Report data indicate that after the day programs were reopened in July 2020, the numbers of clients entering integrated employment showed virtually no increase.
The report does not make specific projections regarding integrated employment in the coming fiscal year, but says that “it is expected that a similar number of adults will transition to these services in FY2022.”
Numbers entering day programs outpaced integrated employment
As noted, the Progress Report indicates that the numbers of clients being placed in day programs after the closure of the sheltered workshops has exceeded the numbers entering integrated employment.
While the numbers of clients placed in integrated employment rose by 20% from 2015 to October 2019, the number of clients in DDS day programs increased by 43% over that same period—a percentage more than twice as high—and those numbers continued to increase though March of this year. (See graph below)
Difficulty in finding jobs acknowledged
The Fiscal ’21 Progress Report acknowledges the state has experienced “difficulty obtaining job opportunities for individuals with significant disabilities who require customized work.” The report further notes:
- Transportation challenges for people seeking or working at integrated jobs in the community, especially in geographic areas where there are limited public transportation and/or para-transit options.
- Individual concerns with the impact on Social Security and other public benefits when individuals earn more income.
In addition, the report states that many day program providers are experiencing “workforce challenges … which result in higher vacancies and turn-over that have an impact on access to and continuity of services.”
Despite those problems, the governor and Legislature have so far proposed cuts in the Fiscal 2022 state budget for both DDS day program and transportation funding. We are continuing to advocate for a restoration of funding to the day and transportation accounts.
Equally importantly, we believe work activities are needed in the day programs to make up for the lost opportunities resulting from the closures of the sheltered workshops.
State House approves cuts to DDS day program funding, increases for provider group homes
The House budget would add $100,000 to the governor’s proposed Fiscal 2022 funding for state-operated group homes (line item 5920-2010). However, when adjusted for inflation, even the House budget proposal would amount to a cut in funding for this line item of somewhat less than 1%. (We are basing that assessment on numbers from the Massachusetts Budget and Policy Center’s “Budget Browser.”)
The two remaining developmental centers would similarly see their funding cut in Fiscal Year 2022 by $2.1 million under the House budget, when adjusted for inflation (line item 5930-1000). Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.
COFAR is continuing to raise concerns regarding the ongoing under-funding of state-run DDS programs. We believe this has led to unchecked privatization of programs and services.
We are also concerned that even within provider accounts, we may be seeing a permanent pullback in funding for day programming, with much of that funding ultimately going to provider-run group homes.
Last month, we sent an issue paper raising those concerns, among others, to Senator Adam Gomez and Representative Michael Finn, the new chairs of the Legislature’s Children, Families, and Persons with Disabilities committee. You can find our issue paper here.
Staff resistance to COVID vaccine may be keeping virus in DDS system
Resistance among group home staff in the Department of Developmental Services (DDS) system to getting vaccinated against COVID-19 seems to be an ongoing problem, and we’re concerned that it may be linked to the continuing presence of COVID in the system.
The latest online weekly COVID testing data for the DDS system show that while the number of infected staff and residents in the system has declined from historic highs in December and January, the rate of that decline may have stalled in the past several weeks.
The vaccination effort in the DDS system started in December.
It is concerning that as of April 9 — some four months after the vaccination program began — less than 50% of staff in state-operated group homes were fully vaccinated, according to data provided last week by the Executive Office of Health and Human Services (EOHHS). In provider-run group homes, only 51% of staff were fully vaccinated as of April 12.
The data are as of April 12 for provider-operated group homes, and as of April 9 for state-operated group homes and the state’s two developmental centers or Intermediate Care Facilities (ICFs). The data were provided to COFAR in response to a Public Records Request. EOHHS and DDS provided data for February and March in response to a previous records request.
In the ICFs, the current level of staff vaccinations appears to be higher than in the group homes, but the numbers are still somewhat concerning. Some 68% of the staff at the Wrentham Developmental Center (WDC) and 66% at the Hogan Regional Center in Danvers were fully vaccinated as of April 9.
That this apparently low level of staff vaccinations is not simply due to a slow vaccination process appears to be borne out from the data. First of all, among residents of both state and provider-run facilities, the vaccination picture looks much brighter.
Among residents in state-run group homes, some 90% were fully vaccinated as of April 9. At WDC, 99% of residents were fully vaccinated, and 91% of residents at Hogan were fully vaccinated as of April 9.
In provider-run residences, 75% of residents were fully vaccinated, although18% had not gotten their first shot as of April 12.
The graphs below illustrate the differences in numbers of persons getting vaccinated among the different settings, and differences in vaccination levels between staff and residents.
The graphs show that relatively large numbers of staff were still unvaccinated (the orange bars) in the provider and state-operated group homes, while the numbers of unvaccinated residents in all of the settings (the yellow bars) were much lower.
Data appear to show resistance by staff to vaccinations
Vaccination data regarding state-run and provider-run group homes appears to imply that there is a relatively large group of staff that are resisting getting the vaccine.
For instance, of the 1,596 staff in DDS state-run group homes who did get a first dose of the vaccine as of Feb. 16, most appear to have gone on to get their second shot as of April 9. A total of 1,728 staff in the state-run group homes were fully vaccinated as of April 9, up from 277, as of February 16.
However, 1,966 staff had still not gotten their first shot as of February 16. And the data indicate that only 279 of those staff had gotten their first dose as of April 9. That left 1,687 staff still unvaccinated in the state-run group homes as of that April date.
As a result, the number of unvaccinated staff in the state-run group home system dropped by only 7.8% between February 16 and April 9, declining from 55.2% to 47.4%.
Decline in COVID-19 in the DDS system may have stalled
As some staff have apparently continued to resist getting vaccinated, the rate of decline of COVID in the DDS system appears to have stalled.
For DDS state-operated group homes, a low in the infection rate was reached as of March 30, when 9 residents and 12 staff tested positive. That is compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December.
But as of April 20, the latest date for online data, the number of COVID positive residents in the state-operated group homes was still at 9, and the number of positive staff had crept up to 14.
In the provider-operated group homes, a low of 29 positive residents was reached as of March 23. That number was up to 31 residents as of April 20. No information is made available by the administration, for unknown reasons, on the number of staff testing positive in provider-operated homes.
At the Hogan Center, no staff or residents have tested positive since February; but at WDC, as many as 5 staff tested positive as of April 13 and April 20. No exact number is given for 5 or fewer persons testing positive in a given setting. Zero residents at WDC have tested positive since January.
So it may be the case that as long as at least some staff are continuing to resist getting vaccinated, the number of staff and possibly even of residents in the DDS system who get COVID may never reach zero.
There have been no deaths in either ICF from COVID since last November. But there have continued to be as many as five deaths per week in the group homes as recently as of April 13. That lower number of deaths in the ICFs may also reflect the fact that the vaccination rate among staff and residents in the ICFs has been higher than in the group homes.
We can only speculate as to whether the administration considers it a problem that the vaccination rate among staff in the DDS system is still as low as it is. Neither Health and Human Services Secretary Mary Lou Sudders nor DDS Commissioner Jane Ryder has responded to our multiple requests for comment about the vaccination process in the DDS system.
Until and unless the Baker administration decides that the public has a right to know their thinking on this, we will have to keep guessing.
Congress still trying to eliminate congregate care for developmentally disabled
In their latest attempt to do away with congregate care for persons with intellectual and developmental disabilities and promote further privatization of services, lawmakers in Washington have proposed the Home and Community Based Services Access Act (HCBS Access Act).
While we support the intent of this legislation to eliminate waiting lists for disability services, the bill’s provisions are heavily biased against congregate care facilities such as the Wrentham Developmental Center and the Hogan Regional Center in Massachusetts. The bill is also biased against sheltered workshops and other programs for people who are unable to handle mainstream or community-based settings.
In that regard, this legislation is similar to the federal Disability Integration Act of 2019, which ultimately did not pass in the previous congressional session.
While we think it was good news that the Disability Integration Act didn’t pass, the bad news is that many in Congress, including most, if not all, of the Massachusetts delegation, appear to subscribe to the notion that community-based or privatized care is the only appropriate option for people with cognitive disabilities.
Every member of the Massachusetts delegation signed on to the Disability Integration Act, which would have encouraged further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country. The HCBS Access Act would do so as well.
Comments are due April 26 on the HCBS Access Act, which has been proposed by Representative Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH). Comments can be sent to HCBSComments@aging.senate.gov.
We will also be urging the members of the Massachusetts delegation to take another look at the issue of congregate care, and reassess their positions.
The HCBS Access Act actually appears to go a step beyond the Disability Integration Act in that it would potentially eliminate funding for Intermediate care facilities (ICFs), including the Wrentham and Hogan Centers. Currently, the federal government pays 50% of the cost of care in both ICFs and community-based group homes. The state pays the other 50% of the cost.
The HCBS Access Act would change that federal-state funding formula to require the federal government to pay 100% of community-based group home costs. The federal share of the cost of ICFs would remain at 50%. That would place enormous pressure on states to eliminate ICFs since they would continue to receive only 50% federal funding.
As the National Council on Severe Autism (NCSA), a nonprofit organization, noted in comments on the HCBS Access Act, ICFs are “a key component of the national safety net.” The organization pointed out that it is a “fiction” that all community-based settings are better or safer than settings labeled as “institutional.”
“’Community services’ in reality often mean no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover,” the NCSA stated in its comments.
Among the many unanswered questions involving the HCBS Access Act are how the federal government would pay the cost of 100% reimbursement of all community-based care.
The NCSA made a number of additional observations about the legislation, including the following:
- The bill is based on a “false assumption that the Medicaid system contains an ‘institutional bias’ that keeps adults with disabilities locked away from the community at large.
The NCSA noted that the steady closure of ICFs and sheltered workshops around the country in recent years “has already had the devastating impact of depriving individuals of critical options.”
- The bill would only support “supported (integrated or community-based) employment and integrated day services.”
According to the NCSA, the bill “could shutter desperately needed programs serving the severely disabled who are incapable of participating in integrated day services owing to their severe cognitive, behavioral, medical and functional challenges.”
We have been raising these same concerns about the closures of ICFs and sheltered workshops in Massachusetts for many years.
- The bill overlooks the difficulty of finding housing in the community for persons with autism, and the possibility of eviction for those with dangerous or disruptive behaviors.
We have also noted the potential for isolation of community-based group home residents whose guardians are perceived as troublesome or meddlesome
- The bill would establish an “advisory committee” that would place veto power in the hands of a few advocates. The NCSA stated that “a small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals,”
As we noted about the Disability Integration Act, this new legislation does not comply with the choice provision in the Olmstead v. L.C. U.S. Supreme Court case. In 1999, the late Justice Ruth Bader Ginsburg, who wrote the majority opinion in Olmstead, endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity.
We urge people to email the Senate Special Committee on Aging, as we plan to do, at HCBSComments@aging.senate.gov. Feel free either to paste in this blog post or forward a link to it, along with a short message in opposition to the HCBS Access Act as currently written.
COVID-19 vaccinations appear to be working in the DDS system, but information is lacking
Data received last week from the state show that as of early March, more than 80% of residents and a little over 50% of staff in residential facilities directly run by the Department of Developmental Services (DDS) had been fully vaccinated for COVID-19.
One would assume that by now, all residents in the DDS system and most of the staff have been vaccinated. But the numbers are almost a month old, and DDS said it does not have vaccination data on residents or staff in provider-run homes.
DDS provided the vaccination numbers for the sate-run facilities on March 29 in response to a Public Records Request we had sent on February 18.
Vaccination data also provided on March 29 by the Executive Office of Health and Human Services (EOHHS) in response to the same Public Records Request does include numbers on vaccinations of residents and staff in provider-run homes. But the EOHHS data is even more out of date than the DDS data.
A spreadsheet provided by EOHHS is dated February 23. The EOHHS data showed that as of February 23, 24% of staff and 38% of residents in the DDS provider-run group home system had been fully vaccinated. EOHHS is the state’s umbrella human services agency, and DDS is located under it.
The chart below, based on the DDS data, therefore shows the most up-to-date information we have from the administration on vaccinations in the DDS system:
On April 1, I submitted a new Public Records Request to EOHHS, this time asking for current data on vaccinations in both provider-run group homes and state-run residential programs.
In addition to the lack of up-to-date vaccination data, both EOHHS and DDS said they did not have any records on numbers of staff or residents refusing vaccinations. We think the difficulty involved in getting this information on vaccinations in the system is troubling.
Since last May, the Baker administration has been posting at least some information in its online weekly state facilities reports on COVID test results of residents and at least some staff in the DDS system. But getting information on vaccinations is another story.
COVID test results continue to be promising
Those COVID test results continue to be encouraging, apparently reflecting the large numbers of residents and staff that have been vaccinated.
As of the March 30 state facilities report, residents testing positive in both state and provider-run group homes declined to some of their lowest levels since the COVID crisis began. There have been no residents or staff testing positive at either the Hogan Regional Center or the Wrentham Developmental Center since late February. There have been no deaths of any residents in either facility due to COVID since last November.
The numbers of infected residents and staff in DDS state-operated group homes and in the two developmental centers have also declined to all-time lows since the crisis began.
As of March 30, 9 residents and 12 staff in state-operated group homes tested positive, compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December.
In the provider-run group home system, 32 residents tested positive as of March 30, compared to a high of 305 in January. As we have previously noted, no information is made available by the administration, for unknown reasons, on the number of staff testing positive in DDS provider-operated homes.
Administration won’t comment on the vaccinations or test results
In February, I emailed both EOHHS Secretary Mary Lou Sudders and DDS Commissioner Jane Ryder, asking for comment on whether the vaccines were responsible for the declining numbers of infected persons in the DDS system even at that early period in the vaccination effort. Neither Sudders nor Ryder ever responded. Why the administration won’t comment on this is perplexing.
Month-long delay in providing records
On February 18, I filed an initial Public Records Request with both EOHHS and DDS, asking for:
1. Records and internal emails that discuss projected timeframes for vaccinating residents and staff in DDS residential facilities; and
2. Records indicating the number of residents and staff who have been vaccinated in DDS residential facilities, broken down by type of facility.
On February 23, I additionally asked for:
3. Records indicating the number of staff and residents in the residential facilities who have refused vaccinations.
As noted, neither DDS nor EOHHS responded with any records until March 29. In its response, DDS stated that it had no internal emails discussing vaccination time frames. While EOHHS did indicate that it had such emails, the agency said it would only provide them if we were willing to pay $1,150 for search and redaction fees.
Also, as noted, both agencies said they had no records on numbers of individuals refusing vaccines.
While DDS had no internal emails on vaccine timelines, the Department stated that the administration had placed residents and staff in congregate care settings under Phase 1 of its vaccine distribution plan. Phase 1 ran from December 2020 through February 2021.
What we know now
At this point, all we can say with any degree of certainty is that most of the residents in state-run congregate care facilities in the DDS system have probably been vaccinated by now. The rest is pretty much conjecture despite our repeated efforts to get more concrete information out of the administration. Those efforts have now included filing two Public Records Requests.
In a letter, dated March 24, to the “DDS community,” Ryder maintained that the administration had heard the “voice” of that community in responding over the past year to the pandemic. “Your voice was instrumental in driving and shaping these developments. You let us know when our policies and protocols went too far – or not far enough,” she wrote.
Ryder added that, “DDS remains committed to hearing your voice, and keeping you informed and engaged as we go.”
If Commissioner Ryder is truly committed to hearing our voice and keeping the DDS community informed, she can start by providing up-to-date information on vaccine distribution in the system, and by responding to our repeated requests for her comment on these matters.
DDS numbers show pre-COVID drop in mainstream employment of DDS clients
Despite continuing clams by the state that people with developmental disabilities are finding jobs and thriving in the mainstream workforce, newly provided state data show a steep drop in “supported” or “integrated employment” for those persons as of early 2020.
A comparison of the new data from the Department of Developmental Services (DDS) with data previously available from the Department reveals a 53% drop-off in “group and individual supported employment” between October 2019 and February 2020. (See graph below)
As the graph shows, the employment numbers actually rebounded a little bit as of November 2020, which was during the COVID period, but then dropped again as of February 2021.
Source: DDS
The employment numbers starting from November 2019 were provided by DDS to COFAR on March 9 in response to a Public Records Request. The previous numbers from June 2014 through October 2019 are from an online DDS December 2019 “Employment First Progress Report.”
The drop in the number of DDS clients in “individual and group supported employment” positions is prior to the COVID crisis, so COVID-19 and its impact could not be the cause.
The DDS data raise further questions about the state’s claims in closing all sheltered workshops as of 2016 that DDS clients would find better and more fulfilling work opportunities in the mainstream workforce.
Baker administration officials since 2016 have attempted to put a positive spin on the situation, with then DDS Commissioner Elin Howe maintaining that year that “there are now more people working in individual jobs in the community than ever before.” But even then, it appeared the administration was gaming the numbers.
The DDS 2019 “Employment First Progress Report” continued to try to cast mainstream employment prospects for developmentally disabled persons in the most positive light. While recognizing a “difficulty in obtaining job opportunities for individuals with more significant disabilities,” the progress report nevertheless touted:
An increase in the total number of individuals now employed, earning minimum wage or higher, and receiving the same benefits as other employees;
An increase in the number of individuals earning minimum wage or higher in small Group-Supported employment services to 71%; and
Continued evolution of Community-Based Day Support programs that support individuals on their pathway to future employment via skill-building and other meaningful activities.
But COFAR and a number of family members have pointed out that what actually occurred in the wake of the closures of the sheltered workshops was the transfer of thousands of clients to day programs where there was little or nothing for them to do. It appeared early on that the numbers of available job opportunities in “integrated” or or mainstream settings was extremely limited.
DDS does not yet appear to have published a further progress report on integrated employment since the December 2019 report.
DDS day programs continue to draw clients, but more than a third began attending remotely
As we have previously noted, the numbers of Massachusetts DDS clients placed in Community-Based Day and Work (CBDW) programs since the closures of the sheltered workshops has outpaced the number of clients who have been given integrated employment opportunities.
The newly provided data from DDS show a 22% drop in overall CBDW participation during the initial months of the COVID crisis — from February 2020 through November 2020. But the numbers began to rise after that; and as of February of this year, the number of day program participants hit an all-time high of 7,569 clients.
Source: DDS
Nevertheless, the COVID crisis resulted in a major shift to remote attendance in the day programs via platforms such as Zoom. As of November 2020, 36% of day program clients were attending remotely only, according to the March 9 DDS data. DDS did not provide figures after November 2020 on the number attending remotely.
Due to that remote attendance rate, CBDW programs are now being subjected to proposed funding cuts by Governor Baker in his Fiscal Year 2022 budget.
That is apparently further bad news for integrated employment prospects because the CBDW line item in the DDS budget is used, in part, to fund job skills training and other activities to help DDS clients make the transition to the mainstream workforce.
No response from Commissioner Ryder
On March 16, I sent an email query to DDS Commissioner Jane Ryder, asking for a comment on the apparent drop in client participation in integrated employment, and for her assessment of possible reasons for it. Ryder so far has not responded to my request.
DDS said it does not possess records relating to the future of CBDW programs
In its March 9 response to our Public Records Request, DDS stated that the Department does not possess any records concerning projections of the number of clients who will be enrolled in CBDW programs in FY22 and beyond, or concerning the number of such programs that will exist, the financial viability of such programs, or the number of clients who will attend remotely.
One question the DDS response leaves us with is whether it implies that DDS does not engage in planning regarding CBDW programming.
Need is greater than ever for work opportunities in day programs
It seems clear that the administration’s integrated employment promises for persons with developmental disabilities were not being realized even prior to the COVID crisis.
Recognizing that problem, we had supported a bill in 2019 (H.88), which would have required that meaningful work activities be provided in CBDW programs themselves. Unfortunately, the language in the bill was subsequently replaced by the Children, Families, and Persons with Disabilities Committee with language establishing yet another Commission on the Status of Persons with Disabilities.
What the latest DDS data confirms, in our view, is that the administration and Legislature need to rethink the ideology that led to the closures of the sheltered workshops, and take substantive action to provide work opportunities to people with developmental disabilities.
Governor’s proposed Fiscal ’22 increase to DDS corporate residential providers is apparently higher than what the state is reporting
While we knew that Governor’s Baker’s proposed Fiscal 2022 state budget includes a major increase to the Department of Developmental Services (DDS) corporate provider-based residential system, we didn’t know how high that proposed increase actually is.
That’s because the amount of Baker’s increase appears to be under-reported by some $36 million on the state’s Mass.gov website.
The state budget site on Mass.gov currently lists the governor’s proposed funding for the provider residential line item (5920-2000) as $1.41 billion for the coming fiscal year. That would amount to a $121 million, or 9.4%, increase over the amount appropriated for the current fiscal year. That’s what we reported in our COFAR Blog post on February 2.
But according to the nonpartisan Massachusetts Budget and Policy Center (MBPC), which tracks the state budget, Baker’s real proposed funding for the provider residential line item is $1.44 billion – an amount $36.4 million higher than the number reported on Mass.gov. The real increase being proposed by Baker is $157 million, or 12.2%.
The reason for the higher funding amount, according to the MBPC, is a proposed, but unreported transfer by the administration of $36.4 million to the provider residential line item from another DDS line item — the Turning-22 account (line item 5920-5000).
The provider residential line item is one of five DDS accounts to which the administration has proposed transferring a total of $55.4 million from the Turning-22 account. Turning-22 funds programs for persons entering the DDS system at the age of 22.
The Mass.gov site lists proposed Fiscal 22 funding for the Turning-22 account of $79.9 million, which would be an increase over the current year of $54.9 million, or 219%. But as a result of the line-item transfers, rather than providing an increase of $54.9 million to the Turning-22 line item, the governor’s FY 22 budget would actually cut the Turning-22 line item by $877,900, according to the MBPC.
It’s not clear to us why the administration has proposed the transfers among the DDS accounts, and it remains to be seen whether the House Ways & Means Committee, which is now considering the governor’s FY22 budget, will adopt the transfers.
It’s also not clear that the administration is intentionally trying to mislead Mass.gov website users in failing to include the amounts transferred among the line items. Nevertheless, the misleading reporting is worrisome to us for a number of reasons.
One reason is that we have long been concerned that the provider residential line item has been steadily increased by successive administrations and by the Legislature at the expense of state-run programs and other accounts. It now appears to be getting an even larger increase than is being reported publicly.
We contacted the MBPC earlier this week after noticing several discrepancies between the DDS line item numbers on he Mass.gov site and the numbers that can be accessed via the MBPC’s online “Budget Browser.”
The Budget Browser is a database of state budget line item amounts since Fiscal 2001, and it provides additional numbers adjusted for inflation.
An MBPC analyst confirmed the DDS line-item discrepancies, and explained the transfer situation to us. The MBPC received a list of the transfers from the administration and forwarded the list to us. The analyst said the transfers themselves are an internal accounting process used in comparing budget numbers over multiple years. If that’s the case, it is still not clear to us why those adjusted numbers are not reported on Mass.gov.
The transfers are displayed in the chart below, along with the governor’s DDS budget amounts as reported on Mass.gov, and the adjusted amounts available from the MBPC via its Budget Browser.
Governor’s budget overstates proposed cut to DDS Day and Transportation accounts
In addition to the proposed transfer of funding to the provider residential line item, Baker has proposed a transfer of $9.6 million from Turning-22 to the Community Day and Work line item.
Based on the Mass.gov site, it appears Baker proposed an overall cut to the Community Day line item of $36.6 million. But due to the transfer from the Turning-22 account, the governor’s proposed cut to the Community Day account would actually be $25 million. That is still a concerning cut, but the transfer would make that cut smaller than it appears on the Mass.gov site.
Baker has proposed additional transfers from the Turning-22 account to the DDS Transportation line item ($4.7 million); Autism Omnibus line item ($4 million), and Respite and Family Services ($613,000).
No transfers proposed into state-funded program line items
Baker has proposed zero transfers to state-run accounts such as the state-operated group homes and developmental centers. As we reported, Baker’s FY 22 budget would shortchange state-operated group homes and developmental centers.
The state-operated group home line item would be cut by $898,600 under the governor’s budget, when adjusted for inflation. The developmental center line item would, as usual, be cut — this time by $2.1 million.
As we’ve previously noted, the major increases in funding to the provider-based line item since FY12 have enabled the corporate providers in the DDS system to garner sizeable surplus revenues in the intervening years. Those surpluses have enabled the providers to provide yearly increases in executive salaries, but have not translated into living wages for direct-care workers employed by them.
We will submit testimony to the House Ways and Means Committee shortly, raising our concerns about the unreported DDS transfers. We are particularly concerned and have questions about the major transfer of funds out of the Turning-22 account.
We would also urge the administration to correct the Mass.gov budget site to reflect the true line item numbers under Baker’s Fiscal 22 budget proposal.
COFAR blog 