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COVID-19 vaccinations appear to be working in the DDS system, but information is lacking

April 5, 2021 1 comment

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 But the EOHHS data is even more out of date than the DDS data.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:

Source: DDS

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

March 25, 2021 6 comments

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.

DDS Individual and Group employment totals

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.

DDS CBDW program totals

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.

Records imply ‘strong’ disagreement in Baker administration last summer over mandatory COVID testing of DDS staff

February 25, 2021 3 comments

Top administrators in the Baker administration appeared to strongly disagree last summer over whether to require testing of staff for COVID-19 in group homes and other residential facilities for persons with developmental disabilities, according to emails received under a state Public Records Law request.

The emails, provided earlier this month to COFAR by the Department of Public Health (DPH), appear to imply that as late as last July, both Health and Human Services Secretary Marylou Sudders and Assistant Secretary for MassHealth Daniel Tsai strongly opposed mandatory testing of staff in residential facilities in the Department of Developmental Services (DDS) system.

At the same time, the emails indicated that DPH Commissioner Monica Bharel and members of her office supported mandatory testing.

Sudders has not responded to a request for comment on the matter. In an email to COFAR sent today (February 25), Jennifer Barrelle, Bharel’s chief of staff, said Sudders “was supportive of mandatory testing…”  However, Barrelle’s email was unclear as to when Sudders’ support began.

Sudders’ agency, the Executive Office of Health and Human Services (EOHHS), oversees departments such as DDS and DPH. By mid-August, EOHHS finally issued a directive requiring testing of staff throughout the human services system. However, this was some five months after the pandemic became a full-blown crisis in the state.

The apparent opposition by Sudders and Tsai at the top of the human services secretariat as late as July could help explain the lengthy delay in implementing the mandatory testing of residential staff.

COFAR and other advocacy organizations had urged mandatory testing as early as April 2020, arguing that staff were potentially a major source of the introduction of the virus in group homes and other residential facilities. Sudders and other administration officials have never explained why it took so long to finally require staff to be tested.

I sent emails on Sunday (February 21) to both Sudders and Bharel, asking for their comment on the newly provided emails. As noted, Sudders has not responded.

In one internal DPH email, dated July 8, 2020, Bharel stated to several members of her office that she had just spoken with Assistant EOHHS Secretary Tsai:

 …and he feels strongly and say (sic) the Secretary (Sudders) does too — around mandatory testing for staff. But he is willing to think it through and learn more. We can discuss at our 10 am call Friday- I know folks on this email have strong beliefs.

Bharel didn’t say in the email what those beliefs were — just that Sudders, Tsai, and “folks on this email” had “strong beliefs” about mandatory testing of staff. The implication, however, was that Sudders and Tsai had different beliefs than did Bharel and her team.

Meanwhile, an internal DPH discussion document in July recommended mandatory testing of congregate care staff.

In her July 8 email, Bharel asked a member of her office to find other instances around the country in which staff testing was mandatory, apparently in order to help make the case to Sudders and Tsai for mandatory testing in Massachusetts.

Bharel further asked in the email whether there was “a model for how many staff need to be tested to feel the surveillance (ongoing testing of staff) is enough? 50%? 60%? How do you decide?”

In her email to COFAR today, Barrelle said that in implementing the mandatory testing program, the administration was involved in negotiations with state employee unions. At least one union filed unfair labor charges against the state for the mandatory testing program, she said.

“You are incorrectly interpreting that Secretary Sudders was opposed to mandatory staff testing,” Barrelle’s email to COFAR stated. “Secretary Sudders was supportive of mandatory testing and rolled it out across all congregate care programs within health and human services within weeks of these (July internal DPH) emails.”

Barrelle’s email to COFAR was not clear, however, as to whether Sudders’ support for mandatory testing may have only begun after July.

DPH office found examples of mandatory staff testing

In a July 9, 2020, email in response to Bharel’s query to her office about other jurisdictions that had implemented mandatory staff testing, the office member provided links to online media accounts in July of testing requirements for staff in colleges and private sector settings.

The office member then noted that in June, the State of Connecticut had begun requiring staff in nursing homes and congregate care settings in that state to be tested for the virus. That was some two months before the Baker administration in Massachusetts issued its mandatory testing directive.

DPH July discussion document recommended staff testing

In addition to the July emails within DPH, a document slated for discussion in Bharel’s office in July included, as a “key question for discussion,” whether COVID testing should be a “mandatory requirement” of staff in state-operated facilities, including hospitals and congregate care facilities.

Option A, which was recommended in the discussion document, was “Yes, testing is a mandatory requirement in state-operated facilities with a goal of achieving full (~90%) compliance.” It wasn’t clear whether this option did or did not include provider-operated facilities.

Under Option A, staff would be given three chances to comply with testing, with a first refusal resulting in a 5-day leave; a second refusal resulting in a 14-day leave; and a third refusal resulting in termination of employment.

Option B was “No, staff are able to refuse testing.”

This second option stated that without mandatory testing, “experience demonstrates that to-date, state-operated facilities are able to achieve 50-65% compliance when access barriers (e.g., shift timing) are limited to the extent possible.”

EOHHS guidance on staff testing, which, as noted, was issued in August by the administration, does not appear to refer to any penalties for staff testing refusals.

Records came from DPH, but not from EOHHS 

We initially filed Public Records Law requests last May with EOHHS, DPH, and DDS for internal emails regarding the mandatory testing issue. In June, after EOHHS indicated their responsive records would be voluminous, we modified our request to limit it to emails between Sudders and her executive team.

We received the emails noted above from DPH on February 1. We never received any records from DDS.

On September 30, after two appeals, EOHHS provided us with just one internal email, dated May 22, which consisted solely of a reprint of a blog post that we had published about mandatory testing a few days previously (COFAR Blog: DDS may be flouting state and federal guidelines in failing to make testing of group home staff mandatory).

That sole EOHHS email did not include Sudders on the thread and contained no comment on the subject of mandatory testing or our blog post. Given EOHHS’s initial claim that they had a large number of responsive emails, we again appealed to the Public Records Division, contending it was unlikely there was only one email in existence in the agency on the issue.

On October 15, 2020, the Public Records Supervisor ordered EOHHS to identify other potentially responsive records within 10 days to our original public records request. But EOHHS never acted in compliance with the Supervisor’s order. We received no further communications from EOHHS.

In our email to Sudders on Sunday, we asked why EOHHS still had not complied with the Public Records Supervisor’s October 15 order regarding our records request, and whether the agency intends to comply with it.

Administration still does not report COVID testing results for provider-based staff

In addition to being slow to require testing of staff in the DDS system, the administration has had a spotty record of reporting the results of that testing.

It was not until May that EOHHS began publicly reporting testing data in the DDS system; but the reporting system has continued to have major gaps in it. Those reports contain no information, for instance, on the number of infected staff in DDS provider-run residences, which constitute, by far, the largest network of DDS group homes.

Starting in November, weekly state facility reports had begun showing results of testing on provider staff in all EOHHS human services group homes. But not only were those reports not broken down by individual agency, such as DDS, the reports started combining provider-run group home results with state-run group homes as of February 16 of this year (see final page).

We previously reported that eight emails we did receive from EOHHS in August, based on a separate Public Records Request, showed a consensus in that agency to reduce public reporting of testing data in the human services system.

EOHHS’s lack of commitment to keeping the public informed about the impact of COVID-19 on the DDS system is disturbing. It is also concerning that EOHHS was apparently not in favor for five months of mandatory testing of staff for the virus.

The lack of such testing potentially exposed thousands of residents of DDS facilities to infection. Had mandatory staff testing occurred earlier, an untold number of COVID cases among residents and staff in the system may have been prevented.

 

As more people get vaccinated in the DDS system, COVID rates appear to be declining

February 15, 2021 Leave a comment

Reflecting a decline in COVID-19 infection rates in the state as a whole, the latest data available in weekly state facilities reports show a drop-off in recent weeks in the numbers of persons testing positive in the Department of Developmental Services (DDS) system.

While that decline appears to be at least partly due to vaccinations that have been ongoing in the system, Baker administration officials have not yet responded to our request last week for comment on the possible trend.

Here are some COVID testing numbers in various DDS residential categories, taken from the latest state facilities report as of February 9, and from previous reports:

DDS state-operated group homes

The number of residents in state-operated group homes testing positive for COVID-19 reached a high of 43 as of January 26, and dropped to 18 as of February 9.

The number of staff in those residences testing positive reached an all-time high of 111 as of December 22, and dropped to 60 as of February 9.

DDS provider-operated group homes

The number of residents in provider-operated group homes testing positive reached an all-time high of 305 as of January 19, and dropped to 111 as of February 9.

There are no data specifically regarding COVID-positive staff in DDS provider-operated group homes.

Wrentham Developmental Center (WDC)

The number of residents at WDC testing positive reached an all-time high of 11 as of January 12, and dropped to 0 as of February 9.

The number of staff at WDC testing positive reached an all-time high of 32 as of January 12, and dropped to 12 as of February 9.

Hogan Regional Center

The number of residents at Hogan testing positive reached a high of 8 as of January 12, and dropped to 0 as of February 9.

The number of staff at Hogan testing positive reached an all-time high of 23 as of December 29, and dropped to less than 5 as of February 9.

Below is a graph showing the positive test curve for provider group home residents since last June. It’s typical of the data arc for the other categories:

Possible role of vaccinations

It appears possible that the recent decline in COVID positive test results in the DDS system is at least partly due to the introduction of vaccines in DDS facilities.

Phase 1 of the state’s Vaccination Plan included residents and staff of DDS long-term care and congregate-care facilities as priority vaccination recipients. But there has been no information provided by the administration on how many DDS residents and staff have been vaccinated so far.

CNN reported Sunday that officials were hopeful that for the nation as a whole, the continued ramping up of vaccinations was “beginning to shift the pandemic’s course in a positive direction.”

Little information available on vaccinations in the DDS system in Massachusetts

The Baker administration recently began publishing online information showing the number of vaccine doses shipped to Massachusetts and the number administered to residents, broken down by age, gender, county, race, and ethnicity. But the online data does not break the numbers down by disability or show how many people have been vaccinated in the DDS system.

On Friday (February 12), I emailed state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, asking whether they would agree that there has been a potentially significant drop in COVID-positive residents and staff in the DDS system.  I also asked whether that drop might be due to the vaccinations of residents and staff in the system. As noted, I haven’t yet received a reply.

The decline in positive test results could be temporary

The CNN article noted above reported that some 38 million people have received their first dose of the two-dose vaccines available to the US market, and about 14 million people have been fully vaccinated.

But the article stated that while Covid-19 numbers may be trending in the right direction now, four key factors will determine whether those trends continue. Two factors contributing to the downward trajectory in infection rates are the increasing vaccinations and a pattern of lower transmission that’s likely in the US during the spring and summer months.

Two other factors, however, can slow or even reverse the declines. One of those factors is the spread of the B.1.1.7 variant, which was first identified in the UK. Another key factor is increased behaviors that favor COVID-19 transmission such as frequenting high-risk settings, including indoor dining.

The article reported that experts believe now is not the time for the US to let down its guard, “even as a growing list of governors loosen Covid-19 restrictions.”

We will continue to monitor the state’s COVID testing reports for DDS facilities. While those reports could be more informative — they should include test results for provider staff, for instance — they at least provide measurable data on COVID infection rates in the DDS system.

We hope the administration will begin to provide similar online information on vaccine doses administered in the DDS system so that we can all better understand ongoing COVID trends in that system.

Pandemic relief bill would jeopardize jobs for people with developmental disabilities by eliminating subminimum wages

February 9, 2021 1 comment

President Biden’s $1.9 trillion economic stimulus bill now being negotiated in Congress contains vital economic relief for individuals, businesses, and state and local governments.

But it is also the latest vehicle for continuing efforts to eliminate both subminimum wages and congregate or vocational work centers for persons with disabilities.

In an email we sent yesterday (February 8) to Massachusetts Senator Elizabeth Warren, we noted that the elimination in the COVID pandemic relief bill of subminimum wages would reduce or eliminate employment opportunities for thousands of people with intellectual and developmental disabilities (I/DD) in Massachusetts and other states.

Warren has, in the past, taken a lead role in calling for the elimination of the Section 14(c) wage certificates that allow the payment of subminimum wages to persons with disabilities.

We previously contacted Senator Warren about this issue, hoping she might reverse her position on it. We’re still hoping for such a reversal from Warren and many other members of Congress, but that may be an uphill battle.

Myths about paying subminimum wages

The claim that vocational work centers and 14(c) certificates promote exploitation or segregation of people with I/DD is misinformed. First of all, vocational work centers, which were formerly known as sheltered workshops, have always been a choice available to disabled persons and their families and guardians. No one has been forced to work in those centers in order to support themselves financially.

Our national affiliate, the VOR, notes that the vocational centers and 14(c) certificates “afford workers opportunities to build self-esteem, develop friendships, and engage in their communities.” As the VOR points out, people who work at these centers “do so without fear of being fired or of having to live up to competitive standards of productivity in order to show their worth. Earned wages, though appreciated, are not the substantive reward for these individuals.”

Among the other myths that have led to the movement to eliminate the 14(c) certificates is that paying low wages to people with disabilities will harm their economic potential and will force them to remain reliant on state and federal support.

What that myth overlooks is the reality that people with I/DD have chronic and lifelong disabilities that will not change for them. The fact that they are reliant on state and federal support is not a failure on their part, but rather an indication that for some members of society, public assistance will always be needed.

But whether legislators agree or disagree with the concept of subminimum wages for the disabled, we don’t think emergency economic stimulus legislation is a proper vehicle for that debate. We are asking lawmakers and their staffs to take time to consider this issue before moving ahead with the elimination of these critically important wage certificates and vocational programs.

We are also asking you to call your members of the U.S. House and Senate to urge them to remove the provision in the stimulus bill that would eliminate the 14(c) certificates.

A contact link for your senators and representatives is here. You can copy and paste in this text on the legislators’ website contact forms.

The linked text asks lawmakers to listen to family members and guardians, such as yourself, who know what is best for their loved ones.

Gov’s proposed FY22 DDS budget would boost provider-run group home funding, but cut day program and transportation funding

February 2, 2021 3 comments

UPDATE TO OUR FEB. 2 BLOG POST:

A DDS spokesperson confirmed yesterday (Feb. 3) that cuts proposed in Governor Baker’s Fiscal 2022 budget in DDS community-based day and transportation programs are due to “the ripple effects of COVID-19 restrictions.”

Those COVID restrictions are expected to continue into Fiscal 2022, which starts on July 1, according to DDS spokesman Christopher Klaskin.

Klaskin said the administration has proposed transfer language to reallocate funding to the community-based day and work and transportation accounts if demand for those programs increases.

If so, that’s good news, although it remains to be seen to what degree those allocations would be made.

Klaskin also stated that DDS and its providers “have worked to accelerate” virtual programming such as Zoom sessions “that can supplement and in some cases replace in-person day services.” (my emphasis)

It is concerning to us that even prior to COVID, many day programs were apparently providing little in the way of meaningful work activities to clients. We have frequently heard from families and guardians that their loved ones have been frustrated and bored in their day programs, particularly after the closures of the sheltered workshops.

The problem has been made worse by the pandemic; and the use of remote or virtual communication formats such as Zoom has not been a satisfactory substitute for many clients, according to reports we’ve gotten.

I asked Klaskin in our email exchange this morning if DDS is considering the use of virtual programming to permanently replace some day program activities.

Our original blog post from February 2 is below:

Governor Baker’s proposed Fiscal Year 2022 budget would boost funding to the Department of Developmental Services (DDS) overall; yet the governor is proposing significant cuts in DDS-funded day and transportation programs.

The proposed cuts appear to reflect the impact of the COVID crisis on the day programs, in particular.

As usual, the governor’s budget would provide a huge increase in funding to the corporate provider-based residential system. And as usual, his budget would shortchange state-operated group homes and developmental centers.

Overall, Baker’s proposal would raise the total DDS budget from $2.1 billion to $2.3 billion. Within that DDS budget, the day program line item would be cut by 14.4%, or $34.6 million. The transportation line item would be cut by 40%, or $13 million.

Among the questions we have is whether the administration believes the day programs will only slowly recover clients who were kept out of them due to the pandemic. Will those DDS clients continue to be without day programs over the next year?

At the start of the COVID crisis last March, DDS shut down all day programs. However, as the crisis appeared to be subsiding somewhat, day programs for DDS clients were reopened in late July.  Guardians were nevertheless asked by the administration to sign a release form that would absolve day program providers of legal liability if a client contracted the virus.

Many family members indicated they didn’t want to sign such a form, and an undetermined number of residential providers declined to send residents to the day programs. In mid-August, the administration appeared to backtrack on the release form requirement. DDS Commissioner Jane Ryder said guidance on the form was being revised, but confusion remained over the matter.

In an email query on Monday morning to Ryder, I asked whether the apparent retrenchment in day programs might be permanent.

I also asked what the current number of clients in day programs is, and how that number compares to the pre-COVID period. Also, how many day programs have closed entirely due to the pandemic? We think answers to those questions would be very important for our families in the DDS system to have.

Usual commitment to provider group homes while starving the state-run group homes

Baker’s budget proposes a $121 million, or 9.4% increase in the provider residential line item, bringing total funding under the line item to $1.4 billion. Much of that increase may have actually been implemented in the current fiscal year in the form of emergency funding due to the COVID crisis.

Additional funding also appears to have come from the Chapter 257 reserve fund, which is intended to fund provider residential contracts. The Chapter 257 fund received a huge increase in the current fiscal year — from $41 million last year, to $160 million. That appears to be a one-time infusion. Baker’s FY22 budget would fund the reserve fund at $79 million. That is nevertheless an increase over FY 2020 of $38 million.

As usual, the state-operated group homes would get relatively little in FY22. The state-operated group home line item would be increased by only 1.2%, or $2.7 million, to $240.5 million under Baker’s budget. That may not even be more than the inflation rate. The developmental center line item would, as usual, be cut by about half a million dollars.

The chart below shows the different trajectories of funding approved by the Legislature for both provider-run and state-run group homes, and state-run developmental centers since FY 2012.

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.

Also slated for major funding cuts under Baker’s FY22 budget are the DDS autism accounts. The respite and family supports account would be level-funded, which amounts to a cut if adjusted for inflation.

The DDS administration account, which funds service coordinators, would get a modest 1% increase in funding under the governor’s budget, which would not keep up with inflation. However, the Turning 22 program would get a major increase — from $25 million to nearly $80 million.

The governor’s budget would continue a series of increases in recent years to the Disabled Persons Protection Commission (DPPC), which would get a $2 million or 36% increase over the current-year appropriation. The DPPC, which is the state’s only independent agency for investigating abuse and neglect of disabled adults under age 60, remains chronically underfunded.

Unfortunately, as noted, the governor and Legislature continue to maintain an imbalance in funding between provider-run and state-run services in the DDS system. Our immediate concern, however, are the planned cuts in funding to day and transportation programs. We hope to get some answers regarding those programs soon.

Legislative report misses an opportunity on employment of the developmentally disabled

January 26, 2021 1 comment

Even before the COVID crisis, people with intellectual and developmental disabilities (I/DD) in Massachusetts were facing daunting problems in finding meaningful opportunities for employment.

Ever since the closures of all remaining sheltered workshops in the state in 2016, hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. They aren’t able to function in those settings or don’t desire to do so.

But even for those people with I/DD who can function in mainstream settings, it has always been difficult to find jobs. Now with unemployment a major problem in the state as a whole due to the pandemic, competing for opportunities in that workforce is an even more daunting prospect for people with I/DD.

For those reasons, we were glad to see a legislative subcommittee undertake a review of the subject of employment of the disabled in Massachusetts, although we were somewhat skeptical that the review would be unbiased and thorough.

Unfortunately, our concerns appear to be well-founded based on the report that has now been released by the “Workability Subcommittee” of the Children, Families, and Persons with Disabilities Committee. We think the Workability Subcommittee, which is headed by Representative Josh Cutler, missed a major opportunity to address the problems described above.

Report buys in to anti-congregate care ideology 

While Cutler’s 33-page report has some good recommendations regarding persons with disabilities in general, it unfortunately seems to have largely missed the challenges faced by people with I/DD.

A key reason for that is that the report subscribes to the ideology behind the privatization of DDS services and against congregate work programs for people with I/DD such as sheltered workshops. The report is a cheerleader for the view that everyone can function in the mainstream workforce, no matter what type or level of disability they have.

The report even termed the sheltered workshop closures “a necessary and important step.” Yet there is no supporting analysis behind that statement in the report.

That isn’t surprising given that the Arc of Massachusetts, a key opponent of sheltered workshops, played an “instrumental” role in assisting the Subcommittee in its work, according to the report’s acknowledgements.

What the closures of the workshops did was take away a choice that was available to people and their families and guardians to continue to participate in settings in which they were comfortable and could function.

There has been nothing adopted to replace that choice, and the report doesn’t offer anything.

Vague recommendation on accommodating those who can’t handle the mainstream workforce

In November 2019, Patty Garrity, a COFAR member, and I met with Rep. Cutler to discuss the employment problems noted above. Patty’s brother, Mark, is one of the former sheltered workshop participants who has been left with little or no meaningful work activities.

Cutler’s report does contain one mention and one recommendation regarding that concern.

Unfortunately, the report’s recommendation is overly vague. The recommendation states that the Legislature should ensure that providers “have the capacity to serve these individuals so they, in turn, can have meaningful work opportunities.”

That’s it. There is no specificity in the recommendation as to how those providers could or should serve those persons.

Even prior to COVID, Patty had to fight on a daily basis for activities for Mark in his day program after his sheltered workshop program closed. As Patty noted in a recent email conversation, Mark can’t handle mainstream settings.  He can’t meet productivity standards. He can’t even attend his day program right now because he doesn’t understand social distancing.

“At the moment,” Patty wrote, “I am back to visiting Mark through the window (of his group home), and everyday he will ask me, “work tomorrow?”

In our October 2019 testimony to the Subcommittee, we urged it to recognize that like Mark, not every DDS client is capable of or desires to participate in the mainstream workforce. We urged the Subcommittee to support H.88, a bill which would have required that meaningful work activities be provided in DDS community-based day programs.

But no mention is made in Cutler’s report of that bill or anything like it.

The language in the bill was subsequently removed by the Children and Families Committee and replaced with language establishing a Permanent Commission on the Status of Persons with Disabilities that Cutler’s Subcommittee recommended. Yet the Commission’s charge does not appear to include any effort to address the lack of work opportunities for people like Mark. 

No acknowledgement of the lack of work opportunities due to COVID pandemic

There is a lot of boosterism in the Subcommittee report regarding companies that have adopted hiring programs for persons with disabilities. But despite the delay in issuing the report until well into the COVID crisis, there is virtually no acknowledgement in it of the huge challenge the pandemic has posed to employment in general in the state.

As noted, if it was difficult for people with I/DD to get jobs pre-COVID, it is even more daunting now that thousands of people are out of work. You wouldn’t know that from reading the report, however.

The only employment stats mentioned in the report are from 2019 when the commonwealth’s average unemployment rate was 2.9%. There is no follow-up on the impact of the COVID-19 pandemic on that unemployment rate, which now stands at 7.4%.

This kind of incomplete analysis may be partly why the report fails to acknowledge the monumental difficulty of placing developmentally disabled persons in mainstream work settings, particularly now.

The report includes what the Subcommittee obviously considered hopeful numbers on mainstream or integrated employment of the disabled, again from 2019. But other than printing the numbers in a chart on Page 11, the report didn’t analyze them. Had the Subcommittee done so, it might not have characterized the numbers in such hopeful terms.

The chart shows the number of DDS clients in integrated or supported employment rose by 1,297 between 2014 and 2018. But the chart also shows the number of clients in day programs, which provide little or no employment activities, rose by 3,159.

In other words, the numbers show the promise of integrated or mainstream employment hasn’t materialized. More than twice as many former sheltered workshop participants had been transferred to day programs as had been placed in integrated employment.

In testimony submitted to the subcommittee in October 2019, we noted that the Legislature never provided adequate funding for the transition from sheltered workshops to mainstream employment. After 2014, it appears DDS was placing fewer and fewer clients in mainstream employment even as the sheltered workshops were closing.

The Subcommittee report seems to be primarily concerned with disabled people with normal cognitive abilities

Overall, there seems to be little focus on people with I/DD in the report. Even the finding that mentions our concern about individuals with little to do following the closures of the sheltered workshops doesn’t specify that the people involved have I/DD.

There is no distinction made between high and low-functioning persons. The main focus of the report seems to be on how mainstream employers need to do more to hire people with disabilities in general.

Report acknowledged it did not deal with subminimum wage issue

In our October 2019 testimony, we urged the Subcommittee to recognize that it is necessary to allow employers willing to hire persons with I/DD to pay them a subminimum wage in order to ensure that those work opportunities are not reduced further.

The report acknowledged that it did not examine that issue.

As noted, we think this report is a missed opportunity. In an email exchange with us yesterday, Rep. Cutler defended the report, saying, “we don’t have a solution for every challenge presented.”

But this is not a matter of having a solution for every challenge presented. Rather it is a matter of recognizing the problems that exist and being open to addressing them.

DDS group home providers have different options for providing COVID vaccinations

January 19, 2021 1 comment

Group homes and developmental centers in the Department of Developmental Services (DDS) system have a number of options for obtaining COVID-19 vaccines and administering them to their residents and staff, as part of a major vaccination effort that officially begins this week.

In a letter to families that she issued last week, DDS Commissioner Jane Ryder termed the DDS vaccination program “complex,” and said the timing will vary by provider.

Ryder said that vaccinations of both residents and staff of DDS residential congregate care programs would officially begin this week, and that vaccinations of “home-based healthcare workers” would begin in early February.

Ryder said that latter category of staff slated for vaccinations in early February includes shared living providers, home-based respite, individual/family support staff who provide in-home services, and “participants who self-direct their services.”

Provider options for vaccinations

In guidance issued last week, the Department of Public Health (DPH) outlined three options available to group home and other congregate care providers for obtaining and administering the vaccines. Those options are “self-administration,” which involves receiving the vaccines directly from DPH; existing partnerships with pharmacies and other healthcare providers; and scheduling vaccinations at mass-vaccination sites.

In her letter, Ryder discussed the latter two methods, but didn’t mention the self-administration option. She said the partnerships apply to providers that have relationships with either CVS or Walgreens to provide and administer the vaccinations.

In some of those cases, vaccinations have already begun, Ryder said. That appears to explain an apparent discrepancy between the reports we received about some vaccinations having started prior to this week, and the official announcement that vaccinations in DDS group homes would start this week.

As part of that partnership option, Ryder said, some providers are arranging with local pharmacies or healthcare providers such as a local hospital or community health center to have vaccinations delivered and administered to residents and staff.

Self-Administration Option

The DPH guidance lists a primary option for congregate care facilities of directly receiving and administering vaccines from DPH (“self-administration”).  The guidance states that this option “is likely to be the most convenient for staff and residents and the quickest method for them to obtain the vaccine.”

However, as noted, Commissioner Ryder didn’t mention this option in her letter. In an email query to Ryder last week, I asked if that meant that none of the DDS group home providers meet the qualifications for the self-administration option, which include having the capacity to vaccinate 200 persons and having refrigeration storage capacity for the vaccines. To date, I haven’t received a reply.

Ryder’s additional points

In her letter, Ryder listed additional points about the vaccines in the DDS system:

  • Vaccination is voluntary for staff and residents.
  • DDS is seeking consent from legal guardians prior to residents receiving the vaccine.
  • Surveillance testing and infection control measures, including the use of face masks and PPE, hand hygiene, and social distancing, will remain in place until further notice.

More information on getting vaccinated in congregate care settings is available here.

Latest COVID test results:

Meanwhile, the administration’s latest online COVID test data for congregate and long-term care facilities shows some mixed results for COVID in the DDS system. The COVID situation had looked last week as though it was improving in the system, but this past week’s report showed the infection numbers headed back up for provider group home residents and staff, and for Wrentham Developmental Center residents and staff.

Provider group home residents testing positive jumped from 236 to 280 in the week ending Tuesday, January 12. New results will be posted online tomorrow (January 20).

The latest report shows the Hogan Regional Center holding steady on the number of residents testing positive. There was even a drop in the number of staff infected, from 14 to 9 at Hogan this past week. But Wrentham saw a sharp increase in staff testing positive — from 14 to 32, while residents testing positive went from 3 to 11.

Please let us know what your experience has been with the vaccination program in the DDS system.

COVID vaccination new update: Program starting next week in DDS group homes

January 13, 2021 1 comment

UPDATE to our previous Update:

Department of Developmental Services (DDS) Commissioner Jane Ryder issued a letter to families and providers this afternoon (January 13), stating that vaccinations of both residents and staff in DDS state-run and provider-run group homes will begin next week, the week of January 18.

This is in line with what Governor Baker announced today (see below), but seems to contradict information earlier this week from DDS that the vaccinations were starting this week.

We have also heard from some families of group home residents who were informed that vaccinations were starting this week.

Ryder also stated in her letter that vaccinations of home-based healthcare workers will begin in early February. For DDS, that includes shared living providers, home-based respite, individual/family
support staff who provide in-home services, and participants who self-direct their services.

Ryder also forwarded guidance from the Department of Public Health on vaccine distribution in congregate care facilities.

Elizabeth Morse, DDS deputy commissioner for operations, had stated in an email on Monday that the vaccination program was starting in DDS congregate programs this week.

Morse said a “small amount of vaccines” were previously distributed to the Hogan Regional Center and Wrentham Developmental Center “to help get the vaccine clinics set up.”

Governor provides some details

In a news briefing today, Governor Charlie Baker said the vaccines would be administered in congregate care settings starting on Monday, the 18th. However, as noted, Morse said the vaccination program was starting in the DDS settings this week.

According to The Boston Globe, the governor said congregate care facilities “can administer the vaccine in multiple ways.” Those facilities can self-administer the vaccine on site if they meet certain criteria, work with an existing pharmacy or provider to provide the vaccinations, or use mass vaccination sites such as one opening Monday for first responders at Gillette Stadium.

Earlier this week, we heard from a number of family members of DDS group home residents that the vaccinations were scheduled to start this week or next week for both residents and staff.

The providers were still waiting earlier this week for guidance from DDS on the vaccines. One family forwarded an email from their provider, dated Monday, informing them that, “Once we have a definite plan for vaccination, we will be reaching out to all families and guardians to let them know.”

A COFAR member received word last week from a medical staff person at the Wrentham Center that staff at the center were first in line for vaccinations, and were starting that day (January 5). However, the COFAR member was also told the center received less than half the necessary doses of the vaccine needed for the staff, which is listed at 850 persons.

DDS developmental centers and group homes fall under Phase 1 of the state’s vaccination plan, but have not been at the top of the Phase 1 order.

The Phase 1 order, which began in December and is scheduled to run through February, is:

1. Clinical and non-clinical healthcare workers doing “direct and COVID-facing care”
2. Long-term care facilities (which apparently include the Wrentham and Hogan Centers and nursing homes)
3. Police, fire, and emergency medical services
4. Congregate care settings (which apparently include DDS group homes, shelters, and prisons)
5. Home-based healthcare workers
6. Healthcare workers “doing non-COVID-facing care.”

Phase 2 of the distribution plan, which is scheduled to run from February through April, includes members of the general population with two or more medical comorbidities, residents over age 75, teachers, grocery workers, sanitation and public health workers; residents over 65, and individuals with one comorbidity.

The vaccines are projected to be available to members of the general public in Phase 3, which runs from April through June.

We will report to you on the promised additional details about vaccine distribution in the DDS system as soon as we hear about them.

Confusion persists as administration remains mum on COVID vaccinations in the DDS system

January 11, 2021 2 comments

Information continues to be sparse and confusing over COVID-19 vaccinations and testing of residents and staff in the Department of Developmental Services (DDS) system.

All of the information we have gotten so far regarding vaccine distribution in the system has been in the form of unofficial reports to COFAR members from facility staff. We heard unofficially, for instance, that staff at the Wrentham Developmental Center began receiving vaccinations last week, but that less than half the necessary doses were available for the center’s 850 staff.

At the same time, we were told late last week that an initial unofficial report that residents and staff at the Hogan Regional Center had gotten vaccinated in late December was false, and that no one at Hogan had yet gotten the vaccine. As a result, we have corrected our January newsletter, which had initially reported the incorrect information.

Unfortunately, our repeated attempts to get official information about the vaccine distribution in the DDS system either from Health and Human Services Secretary Marylou Sudders or from DDS Commissioner Jane Ryder have been rebuffed.

Infection rate may be leveling off

Amid all the confusion and uncertainty, there appears to be some potentially good news that the number of residents testing positive in the DDS system may be leveling off after a second COVID surge that began in October.

Our chart below is based on the administration’s latest official weekly state facilities report, and shows the results of COVID testing of residents in provider-operated group homes.

Administration officials not responding to emails

So far, however, we haven’t gotten a clear picture of the vaccine distribution situation.

On December 2, I emailed both DDS Commissioner Ryder and HHS Secretary Sudders to ask whether the Baker administration would include DDS residents and staff in its plans for distribution of the first doses of the vaccine that Massachusetts received. I never received a response to that query.

While the administration did issue a general vaccine distribution plan in early December, the plan doesn’t mention or make clear how DDS clients and staff fit into the overall picture.

When we heard that the unofficial report was false that vaccinations had been given at the Hogan Center, I sent a second email last week (January 7) to Sudders, Ryder, and DDS’s ombudsman asking for any information they could provide about the vaccination schedule in the DDS developmental centers and group homes. Again, no answer.

On Saturday (January 9), I emailed Marylouise Gamache, EOHHS ombudsman, with the same question. No answer so far.

In addition to the confusion over the developmental centers, it remains unclear when DDS group home residents will get the vaccine, and where those residents fall within Phase 1 of the state’s vaccine distribution plan. It appears all residents of DDS group homes and developmental centers are included in Phase 1 of the plan, which stretches through February. But it is unclear as to whether group home clients, in particular, are closer to the top or the bottom of the Phase 1 priority order.

As one COFAR member put it, it doesn’t seem as though it should be difficult for the administration to provide information for DDS families and guardians about the vaccination schedule and dosages delivered and administered. We think that data could easily be added to the online weekly state facility reports.

COVID testing in DDS system indicates some leveling off of the rate of infection

As noted, the picture may be improving regarding COVID testing in the DDS system. The infection numbers in the administration’s latest weekly report are still relatively high, but the peak may have occurred as of the Dec. 22 reporting date when 248 residents were listed as COVID positive. That number of positive residents was down to 236 as of last week’s reporting date on Wednesday. (See chart above.)

The numbers in those weekly reports for infected staff in provider residences are actually two weeks behind. Even so, that positive test rate may have also leveled off. The latest weekly report shows the positive test rate for provider staff in all EOHHS group homes was 3.12% as of the latest reporting date of Dec. 23, down from 3.16% as of Dec. 9.

Hopefully those downward numbers will continue, but it may be too early to say this is a downward trend.

Reporting of testing results should include tracking of “long-haul” effects

We have previously reported that the administration’s public reporting of testing results of both residents and staff in the DDS system has been spotty. For instance, while the weekly facility reports finally began to include information about provider staff testing positive, the numbers are for all human service provider agencies, not just DDS.

We would also like to see tracking of “long-haul” effects on residents and staff in the DDS system. Long-haul effects are lingering complications from the virus that can be debilitating even if individuals have recovered from the immediate effects of the infection.

The weekly reports do track what is termed “current clients recovered.” The reports define clients recovered as those who have tested negative or have met symptom and time-based recovery guidelines. Our guess is someone could meet those guidelines and still have long-haul effects of the virus.

Also, the numbers in the reports are apparently not cumulative because the reports state that those numbers don’t include “all recoveries over time.”  They are listed as  “current clients recovered” each week.

For months, we have been saying that we need more and better information from the administration about its response to the virus. While the administration has made some strides in this area, the continuing lack of communication about vaccine distribution, in particular, is frustrating and disturbing.

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