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DDS considering mandatory group home staff testing as COVID-19 cases continue to rise

April 28, 2020 14 comments

As the number of group homes reporting positive cases of COVID-19 continues to rise in Massachusetts, a Department of Developmental Services (DDS) official said the Department is considering making staff testing for COVID-19 mandatory.

COFAR has raised a concern that there currently is not a requirement that staff working in the group homes get tested even though DDS began an effort on April 10 to test all residents and staff in more than 2,300 residences across the state.

In addition, it is not clear that DDS has any plans to test residents and staff in its facilities more than once.

COFAR maintains that infected staff may be introducing the virus into group homes and other long-term care facilities. Unless all staff are required to be tested on a periodic basis, it appears likely that positive cases and deaths will continue to increase in those residences.

Christopher Klaskin, the DDS ombudsman, told COFAR yesterday (April 27) that “mandatory testing of all employees would impact multiple EHS (Executive Office of Health and Human Services) agencies and collective bargaining agreements, and we are exploring this option.”

Klaskin added that “very few employees have refused (to be tested), and those situations are addressed on a case-by-case basis.”

In a follow-up email to Klaskin, we said it was welcome news that DDS is exploring the option of mandatory testing, but asked why DDS hasn’t made staff testing a requirement before now.

We also asked how many staff have refused to be tested. It would take only one infected staff to infect an entire group home. We also noted that because DDS is still early in the group home testing program, it is likely that the number of staff refusing to be tested will continue to grow.

An official with one DDS provider, the New England Center for Children, told Boston.com yesterday that the first case of COVID-19 in the Center’s group homes came six weeks ago from an infected staff member who was asymptomatic. The provider’s group homes were locked down even at that time.

There is similarly no requirement that all staff in nursing homes around the state be tested. More than 56% of the total deaths in the state are in nursing homes and rest homes, the Boston Globe reported this week.

Numbers of infected DDS group homes rising rapidly

Data provided to COFAR by DDS shows that over a four-day period ending Sunday (April 26), the number of DDS-funded group homes reporting positive cases of COVID-19 rose from 560 to 720, out of a total of 2,353 corporate provider-operated and state-operated residences. That is an increase from 24% to 31% in the proportion of homes reporting infected residents.

As of April 26, a total of 1,886 staff and residents in the group homes and two remaining DDS developmental centers had tested positive. That is up 252 persons from just four days earlier. There have been 30 deaths in the DDS system from COVID-19.

Repeat testing needed

Earlier this month, DDS announced that the state was contracting with Fallon Ambulance Service to begin testing staff and residents throughout the system.  DDS apparently does not have a timeline for Fallon to complete its testing of what we are estimating to be 22,000 or more residents and staff in the DDS group home system.

It is also unclear whether DDS plans to have Fallon or any other entity periodically retest those individuals and staff who did test negative the first time.

COFAR President Thomas Frain termed a negative test result “a transitory label.” He added that, “Representing to the public that you are at war with the virus but aren’t retesting is akin to chasing Bin Laden across Afghanistan but allowing him free access to the Pakistan border.”

Referring to the need for repeat testing in nursing homes, Simon Johnson, a professor at the MIT Sloan School of Management and a cofounder of the COVID-19 Policy Alliance, told the Boston Globe that  a single round of testing is a “recipe for disaster.”

Johnson said the state needs to move “as quickly as possible to help implement a regular comprehensive surveillance testing program for all residents and staff, so we know who is infected and who is not.” Not only do some people carry the virus without displaying symptoms, some may test negative even though they have already been infected, Johnson told the newspaper.

State may be in violation of Medicaid waiver requirements

In an email to Klaskin and DDS General Counsel Marianne Meacham on Saturday, COFAR asked whether the lack of mandatory staff testing so far is a potential violation of client safety “assurances” under the federal Medicaid Home and Community Based Waiver.

The Waiver, which authorizes Medicaid funding for group homes and other community-based programs, states that states must provide assurances that “necessary safeguards have been taken to protect the health and welfare of the beneficiaries of the services.”

Klaskin responded that DDS and all EHS agencies follow testing protocols from the Centers for Disease Control and Prevention, “so they meet all federal safety regulations.” He added that DDS “must adhere to (the testing protocols) to meet our waiver requirements and safeguards.”

Klaskin added that “pop-up” testing locations are being set up across the state, “giving state and provider staff across multiple shifts another option for testing.”

We are continuing to monitor the testing of group homes across the commonwealth, and are hopeful DDS will make the right changes, particularly making the testing mandatory and repetitive. If that happens, we think and hope the numbers testing positive will peak sooner than they otherwise would, and will start to diminish.

DDS COVID-19 testing is underway, but pace is slow and it’s voluntary for staff

April 23, 2020 5 comments

While the Department of Developmental Services is now moving to test all residents in group homes throughout the state for COVID-19, COFAR is concerned about the slow pace of the testing and about a potentially major gap in the process.

That gap concerns the voluntary nature of the testing of staff in the thousands of group homes in the state. DDS officials acknowledged that staff can opt out of the testing and still continue to work in group homes.

More than 1,300 residents and staff of DDS group homes and developmental centers had tested positive for COVID-19 as of April 19, according to numbers that we are now beginning to get from DDS.

In the DDS group home system, 518 residents and 653 staff had tested positive, including both provider and state-employee staff.

More information has been available about the situation in the developmental centers than in the group homes.

As of April 19, 46 residents and 90 staff had tested positive at the Hogan Regional Center in Danvers. There has been one death at the center.

In the Wrentham Developmental Center, 14 residents and 13 staff have tested positive.

As of Wednesday, most clients at Hogan with COVID-19 were reported to have mild symptoms. Many were in recovery and had completed a 14-day quarantine period and  were symptom free. Workers at Hogan are reported to be fully gowned, gloved, and masked.

Staff testing is voluntary

Christopher Klaskin, the DDS ombudsman, said this week that staff in group homes can opt not to be tested even if residents in the homes in which they work are symptomatic or have tested positive. Under current DDS guidelines, the staff have to have their temperature taken before entering the residences and can’t have a temperature above 100.0 degrees.

COFAR is questioning the voluntary nature of the staff COVID-19 testing, arguing that staff who are positive but asymptomatic could be bringing the virus into group homes where the virus could then spread rapidly.

“Unless all staff and residents are tested, the virus still has the upper hand,” COFAR Board President Thomas Frain said.

Colleen M. Lutkevich, COFAR’s executive director, said the organization has received reports that testing of staff is not being offered by some providers and that each provider is making their own decision about it. Taking temperatures but not actually testing staff for the virus “misses all of the asymptomatic carriers in this vulnerable population,” Lutkevich said in an email to DDS.

Guidance issued by DDS to all providers on April 13 does not include any specific testing requirements for staff or residents other than stating that the permission of a guardian is needed before residents can be tested. DDS officials have stated that it would be unusual for a guardian to refuse to consent to testing of a resident for COVID-19.

Regarding staff, the DDS guidance states only that a staff member who does test positive for COVID-19, but who does not show symptoms of the virus, is excluded from working in the residence for at least seven days from the date of the test. A staff member who tests positive and who does have symptoms is excluded from working for three days after they have recovered from the illness and at least seven days since the symptoms first appeared.

Slow start to the testing

COFAR is also concerned about what appears to be a slow start to the testing of residents and staff in the group homes. Earlier this month, DDS announced that the state was contracting with Fallon Ambulance Service to begin testing staff and residents throughout the system.

Klaskin said DDS does not have a timeline for Fallon to complete its testing of what we are estimating to be 22,000 or more residents and staff in the DDS group home system. It’s unclear why the National Guard is apparently being used to test residents and staff in Department of Public Health (DPH) nursing homes and other long-term care facilities, but not in DDS facilities.

DDS reported that as of April 19, 1,964 residents and staff had been tested in DDS group homes and at the Wrentham and Hogan centers by Fallon. This averages to less than 196 tests a day over the first 10 days in the group homes.

In an email sent to a COFAR Board member earlier this month, DDS Commissioner Jane Ryder stated that Fallon had the capacity to do up to 1,000 tests a day.

DDS does not have data on total test numbers in group homes

It is apparently not possible to compare the number of residents and staff testing positive in DDS-funded group homes with the total number actually tested.

As noted, a total of 518 residents and 653 staff have tested positive in the group homes. That number, however, includes people tested before Fallon started, Klaskin said.

While Fallon has tested 1,964 residents in the past 10 days, Klaskin said DDS doesn’t have information on the total of the number of persons tested prior to Fallon. So there appears to be no way to compare apples to apples in that respect.

DDS testing numbers not broken out by either COVID-19 Command Center or DPH

DPH, meanwhile, continues to track and publicly report detailed numbers on COVID-19 cases in nursing homes and other long-term care facilities that the department oversees. But DPH does not report numbers on DDS long-term care facilities, including the group homes and developmental centers.

Even though the administration’s COVID-19 Command Center has begun putting out information that includes DDS facilities, the numbers for those DDS facilities are not broken out from the totals.

For instance, a Command Center report stated that as of April 19, 3,743 tests were done at 206 group homes and “care sites” involving 2,297 clients and 1,146 staff among facilities funded by DDS, DPH, the Department of Children and Families, and the Department of Mental Health. That information is potentially of limited value unless it were to show a breakdown of the numbers in the facilities for each of those agencies.

As we have noted to legislators and policymakers, the families and guardians of close to 10,000 DDS residential clients are still largely being left in the dark because so little information about their loved ones is forthcoming from the administration.

We have contacted the chairs of the Legislature’s Children, Families, and Persons with Disabilities Committee and asked them, among others, to follow up with the administration to urge improvements in these DDS testing and reporting practices.

Administration withholding information on COVID-19 conditions in DDS system

April 17, 2020 10 comments

Even as the Baker administration reports daily on COVID-19 infection rates among most of the population in Massachusetts, numbers of infected persons with intellectual and developmental disabilities appear to be being kept under wraps.

Information is coming out sporadically and anecdotally from the media and individuals on the ground.

The Boston Globe and other outlets reported this week that as of Tuesday, 276 people in Department of Developmental Services (DDS) residential settings statewide had tested positive as had 321 staff. Nine people receiving services from DDS had died from COVID-19.

Among the anecdotal information we’re getting:

  • While testing was completed last Sunday of residents at the Wrentham and Hogan Developmental Centers, the staff at Wrentham apparently did not get tested, as the administration had reported. DDS Commissioner Jane Ryder said late yesterday that testing of the Wrentham staff will now take place this weekend.
  • WCVB reported yesterday (April 17) that 40% of residents in three units at the Hogan Center had tested positive for the virus, according to the Massachusetts Nurses Association. The union said that 44 residents and 55 staff members have also tested positive.

While the Department of Public Health (DPH) provides daily updates on deaths and infections due to COVID-19 throughout the state, information has only been provided sporadically by the administration, and on a selective basis to the media, about the situation in the DDS system.

The number of deaths and COVID-19 positive cases in the DDS system appears to be rarely if ever mentioned in press briefings held by Governor Charlie Baker and Health and Human Services Secretary Marylou Sudders.

This raises a question whether the administration is placing a lower priority on protecting the DDS population from the virus than it is placing on other long-term care populations such as the elderly and even chronically ill.

Joe Corrigan, a COFAR member and member of the Wrentham Center Board, expressed his frustration in an email yesterday to Sudders and and DDS Commissioner Jane Ryder. He wrote,

Tell us where the decisions are being made. Tell us what the tipping point is for getting real and complete attention to (the Wrentham Developmental Center) and all DDS.  Tell us where our loved ones stand in the pecking order vs. the poor souls at soldiers homes, nursing homes.

COFAR has requested information on numerous occasions on testing results in the DDS system from Sudders and Ryder, and has gotten only limited answers and often no response. We were forced on Thursday to file a Public Records Law request with EOHHS, DDS, and DPH for records on the timeline for testing in the DDS and DPH systems.

Staff not tested at Wrentham Center

As we reported on Wednesday, the administration has engaged Fallon Ambulance Service, a private company, to carry out the testing throughout the DDS group home system and apparently in the state-run developmental centers.

However, contrary to reports from the administration, testing of staff has apparently still has not occurred at the Wrentham Center. The administration had reported that all residents and staff in the Hogan and Wrentham Centers had been tested last Sunday.

Earlier this week, a Wrentham staff member told COFAR Executive Director Colleen M. Lutkevich that, “at this time only the residents (at Wrentham) were tested.” The staff member added in an email that direct care staff were “doing a wonderful job of taking care of the residents at this time, but the reality is they are also the ones that will be bringing the virus in.  There have been several residents that have tested positive, but there still has not been any testing of the staff.”

Yesterday, a DDS official told Lutkevich that Fallon Ambulance said they “would work with us to come back to Wrentham to test the staff there,” but that he had “no specifics on when they may schedule us.” Late yesterday, however, Ryder informed Lutkevich that the testing would take place this weekend.

In his email to Sudders and Ryder, Corrigan pointed to the continued lack of testing of  staff at the Wrentham Center as a critical problem:

 I have no doubt that (administrators and staff at the Wrentham Center) are doing much with little in terms of distancing, etc. but please tell me what is the sense of testing residents without testing the staff who come and go daily and have to be the ones who brought in the virus to the already affected and, no doubt, growing number of victims.

Crisis highlights problem with privatized care

The testing problems are potentially compounded in the DDS group home system. Some 8,800 residents are dispersed around the state in more than 2,000 group homes, most of which are operated by corporate nonprofit providers to DDS. We are estimating that there are some 14,000 to 15,000 direct-care staff serving those residents. All of those people have become potential or actual targets of the virus.

No information has so far been forthcoming from the administration on how long the Fallon testing program will take in the group homes. Fallon is reportedly capable of testing between 500 and 1,000 individuals per day.  We are already hearing anecdotal reports about delays in scheduled testing by Fallon in some group homes.

Fallon is facing the prospect of having to test at least 22,000 residents and staff  in the residences.  That apparently doesn’t count the clinicians, physical and occupational therapists, nurses and others who may still be visiting those homes and might not be there when the testing is being done in a particular home.  We also have no information on testing plans for staff that is not working the shifts at the time of the mobile testers are there.

Group home model presents logistical problems

The COVID-19 crisis appears to show how potentially poorly the privatized care model is at protecting people during pandemics. DDS was reportedly able to test all residents and staff in the state run developmental centers in one day,  with the apparent exception, however, of staff at the Wrentham Center.

Due to the highly decentralized nature of the privatized group home system, it is probably impossible to do the necessary testing within a relatively short time frame unless the administration was to call in the National Guard or another source of large-scale assistance. This raises the question whether the administration considered that, and if so, why they rejected it with respect to the DDS system, but have adopted it for the DPH nursing homes.

It further appears that within the privatized community-based system, highly compensated executives should have been doing strategic planning for the potential occurrence of a pandemic such as this one, and apparently did not do that planning.

A single testing site for group homes might make more sense

COFAR President Thomas Frain suggested that given the wide dispersal of group homes around the state, it might make more sense to test all group home residents at one site such as Gillette Stadium in Foxborough.

Frain suggested that if testing at a site such as Gillette were made available and each group home took just one resident per day to the site for testing, all residents and direct-care staff could potentially be tested in as little as 10 days. That is based on Frain’s calculation that there are some 2,500 group homes in total, containing some 25,000 residents and staff.

“Instead of ambulances traversing the commonwealth, they could have put all of those ambulance people at a single testing site swabbing people,” Frain said. Some people who could not be transported, would have to be tested at their residences, and Fallon could do that.

In the final analysis, we think a quote from the late U.S. District Court Judge Joseph L. Tauro is unfortunately highly relevant to the situation today. Judge Tauro wrote:

The (intellectually disabled) have no potent political constituency. They must rely on the good will of those of us more fortunate than they, and the constitution…

DDS plans to test everyone in the system for COVID-19, but timeline still unclear

April 15, 2020 3 comments

The Department of Developmental Services (DDS) intends to test residents in all group homes in the state for COVID-19, DDS Commissioner Jane Ryder and other department officials told COFAR yesterday.

In a conference call, Ryder and other officials described a broad testing program that has already been completed in the state’s two developmental centers. As of this past Friday, the mobile testing program began in both state and corporate provider-operated group homes across the commonwealth.

Ryder said the group home testing program is being carried out by Fallon Ambulance Service in partnership with MassHealth. The ambulance service, which employs a team of testers, is based in Quincy, but operates across the state.

Ryder said residents and staff will be “prioritized” for testing if they exhibit flu-like symptoms. COFAR has raised questions about that policy and has called for immediate testing of all residents whether they are symptomatic or not.

Company will test in thousands of group homes in Massachusetts

There are 2,100 provider-run group homes dispersed around the state in Massachusetts, housing more than 7,800 residents, according to DDS. There are another 1,066 residents of state-operated group homes. During Tuesday’s conference call, the DDS officials did not offer a timeline for completing the tests, which are also intended to include staff in the residences.

Given that National Guard personnel are currently being used to test residents in nursing homes and other long-term care facilities in the state, COFAR has suggested that the National Guard might also be deployed to speed up the testing process in DDS group homes.

The testing consists of the use of nasopharyngeal swabs, which are considered the most reliable type of test. Results take from 24 to 72 hours to obtain, Ryder said.

We asked how many mobile testers Fallon Ambulance currently has and how quickly the testing can actually be done. No one answered that question during Tuesday’s conference call, although Ryder told a COFAR Board member in an email on Monday that “Fallon (Ambulance Service) has the ability to perform between 500 to 1,000 test per day.”

COFAR Board President Thomas Frain said an official with Fallon told him that given that the ambulance company is facing the prospect of testing close to 9,000 residents in both the state-run and provider-run group homes as well as an undetermined number of staff in those facilities, the testing was a “long-term” project.

DDS General Counsel Marianne Meacham said guardians can also arrange to have residents tested by their primary care doctors, and that the mobile testing program is seen as an addition to that.

DDS Chief of Staff Chris Thompson added that guardians and family can obtain “telemedical appointments” with MassHealth to discuss symptoms. They should go to www.buoy.com/mass

Questions about prioritizing residents for testing

COFAR has questioned the DDS policy of testing group home residents showing flu-like symptoms before testing anyone else. Frain maintained that research shows asymptomatic residents can be just as likely to transmit the virus as those exhibiting symptoms.

Frain noted an NPR report this week concerning a nursing home in King County, Washington in which a third of the 82 residents tested positive for the coronavirus in mid-March. Half of those were free of fever, malaise and coughing when they were swabbed for the virus, though most went on to develop symptoms. The coronavirus “spread rapidly through the facility just two weeks after it was introduced by a health care provider, despite the nursing home’s policy of isolating residents with signs of COVID-19.”

Information on test results

In Tuesday’s conference call, we reiterated our call on DDS to publicly report infection rates of persons in the DDS system, and asked about getting periodic reports on the results of the mobile testing. Meacham said DDS will provide COFAR with testing numbers when the Department has data “from at least a full week so that we have a sense of the progress of testing our community.”

Alternative sites for relocated residents

Ryder said that for those residents who are symptomatic and need to be relocated from their residences, DDS has identified three sites at the Wrentham and Hogan Centers and at the former Templeton Developmental Center where there are spaces that can be used to quarantine individuals. Ryder said these are not planned to be medical facilities.

New COVID-19 guidance document for providers

Thompson also outlined highlights of a “comprehensive” residential program guidance document just issued and shared with providers.  The 16-page document updates the EOHHS guidance document of March 25. There is also a one-page summary document for all group home managers and staff.

Highlights include:

  • A requirement that all staff wear face masks during shifts. Those should be surgical masks when possible or else cloth masks that comply with CDC guidelines. In emergencies, providers can ask for personal protective equipment from the Massachusetts Emergency Management Agency (MEMA).
  • Staff will have their temperature taken prior to entering any residence. Anyone with a temperature of 100.4 or higher will not be allowed to enter.
  • Staff who test positive but show no symptoms will be restricted from working for at least 7 days. If they do have symptoms, they must stay away from work for at 3 days after they have recovered and at least 7 days after the first symptoms appeared.
  • If a resident shows symptoms or tests positive, the decision whether to provide on-site care or move the person to another location will be made on a case-by-case basis after consulting the local board of health. The family or guardian would have to be notified of any decision to relocate someone. (See discussion above about alternative sites at Wrentham, Hogan, and Templeton.)

Meacham provided the following links to the Department’s new guidance document and to its updated COVID-19 information on its website:

Please stay tuned for further information as we get it from DDS and other sources, including the promised test results.

COVID-19 testing program finally starting in DDS residential system, but scope is unclear

April 13, 2020 4 comments

We have been calling for COVID-19 testing of persons with intellectual and developmental disabilities and their caregivers in Massachusetts, and it appears the Baker administration has finally begun doing so.

In an email Saturday (April 11) to COFAR Executive Director Colleen M. Lutkevich, Marylou Sudders, secretary of Health and Human Services, said the administration “has started mobile testing for individuals in DDS (Department of Developmental Services) group homes.”

Also on Sunday, Lutkevich said she was informed that testing of residents and staff had begun at the Wrentham Developmental Center and the Hogan Regional Center in Danvers, the state’s two remaining Intermediate Care Facilities for the developmentally disabled (ICFs).

COFAR maintains that such testing is essential because group homes are potential targets for the rapid spread of the virus. The lack of testing of residents and staff in DDS residential facilities has contributed to a lack of resources for protection and care of both staff and residents.

While the testing is a welcome and necessary development, it remains unclear whether the administration’s plans call for testing of all residents in corporate provider-run residences funded by DDS, and what that testing timeline would be. There are 2,100 provider-run group homes dispersed around the state, housing more than 7,800 residents, according to DDS.

In an email sent Sunday to Sudders and DDS Commissioner Jane Ryder, Lutkevich and COFAR Board President Thomas J. Frain asked for clarification of the scope of the overall testing program and whether there are plans to deploy National Guard personnel to carry out the testing throughout the provider group home system.  The National Guard is currently being used to test residents in nursing homes and other long-term care facilities in the state.

Staff at the Wrentham Center were given the option Sunday of getting tested at Gillette Stadium in Foxborough, but most were opting to be tested at the Wrentham ICF. The Wrentham Center was using teams to go into each residence on the campus and was doing staff testing in tents.

There were 235 residents at the Wrentham Center and 117 residents at the Hogan Center as of the start of the current fiscal year. COFAR was informed that all Hogan and Wrentham Center residents and most of the staff had been tested as of Sunday.

At least one parent of a resident at a state-operated group home in the northeast region of the state reported on Sunday that testing was about to begin of residents there. There are currently 1,066 residents of state-operated group homes throughout the state, according to DDS.

COFAR has continued to call on Sudders to publicly report the results of any and all testing done of individuals in the DDS system.  Sudders last week denied COFAR’s request that the Department of Public Health (DPH) provide public updates on confirmed cases of infections and deaths in DDS-funded residential facilities.

On April 10, COFAR sent an email to Sudders asking for the basis and reasoning for her denial. DPH currently publishes daily updates on its website of the numbers of persons in the state who have died and who have tested positive from COVID-19. In addition, those daily updates list numbers of infected persons and deaths in “long-term care facilities.”

However, no information is reported in the DPH updates specifically on numbers of residents or staff of DDS-funded group homes or ICFs who have died or become infected even though those facilities also provide long-term residential care.

According to the published DPH data, approximately 50% of the COVID-19 deaths in the state are among residents of long-term care facilities. Frain maintained that care for those long-term care facility residents identified by the DPH “is funded similarly to care for the residential DDS population, and all of those individuals are very vulnerable and rich targets for COVID-19.”

In an email to Sudders on Saturday, Frain maintained that “in Massachusetts, many of the group homes are essentially petri dishes for the spread of the virus.”

According to media reports on April 9, 122 residents and 150 staff had tested positive for COVID-19 in DDS facilities. There had been 3 deaths reported. That is the latest information COFAR has been able to obtain on deaths and infection rates in DDS facilities because of the lack of public information from the administration.

COFAR and its affiliate, the Wrentham Family Association, have also called for distributions of personal protective equipment in the developmental centers and group homes, and asked that “appropriate precautions then be made for all who test positive (isolation, quarantine).”

A thanks to the media from Colleen

Thank you to everyone who helped with this effort to advocate for DDS clients and their families, especially our most reliable media friends at Channel 5 Boston, (Kevin Rothstein and Mike Beaudet), WGBH radio, (Isaiah Thompson and Mark Herz), the Salem News (Julie Manganis) and the Worcester Telegram (Elaine Thompson).  Their willingness to report on this story made all the difference.  Wishing everyone health and safety.

We need information on COVID-19 infection rates in DDS residential facilities

April 6, 2020 1 comment

[Update: We have been informed by DDS that they are preparing a statement in response to our concerns about the lack of information on COVID-19 cases in group homes, and are hoping to get it to us by today (April 7).  A DDS official said the Department has information on the number of COVID-19-positive cases in group homes. That information is reported to them by providers and local boards of health, but it is not part of the daily Department of Public Health report.]

The state Department of Public Health posts daily updates on the numbers of deaths in Massachusetts and the number of persons infected with the coronavirus.

But virtually no information is available on the number of persons with intellectual and developmental disabilities who have died or been exposed to the virus.

As a result, we asked DPH Commissioner Monica Bharel in an email today (April 6) for a breakdown showing the numbers of deaths of residents of group homes and Intermediate Care Facilities (ICFs) funded by the Department of Developmental Services (DDS).

The daily DPH updates include numbers for residents of “long-term care facilities,” but those facilities are defined as nursing homes, rest homes and skilled nursing facilities.  Other forms of congregate care, including DDS group homes and public housing, are not part of that total.

So far, we received a response to our email from Marylou Sudders, Secretary of Health and Human Services, essentially denying our request for that more specific information on DDS facilities. We had cc’d Sudders in our email.

“At this time, the daily reporting is what the Department of Public Health that is made public is what is able to be reported,” Sudders wrote back. (Yes, that was her verbatim reply.)

Sudders added that she was referring us “to EHS (the Executive Office of Health and Human Services, which is actually her agency) and DDS for more specific information regarding congregate care facilities.”

In a further response to Sudders’ message, COFAR Executive Director Colleen M. Lutkevich wrote that, “This appears to be a circular conversation, and my frustration as the guardian and sibling of a severely intellectually disabled resident in DDS care… grows by the hour.”

Lutkevich noted that “we have consistently been unable to get accurate information from either DDS or EHS, the agency that you, yourself oversee.”

To the extent that DDS has given out information on deaths and infections, it has been in response to queries from news outlets. In those cases, the information has been given directly to those media outlets, not to the public as a whole. DDS has not responded to our own repeated requests for information.

Families and caregivers seeking information

We have been raising concerns for the past two weeks that the roughly 10,000 residents of DDS group homes are particularly vulnerable to a possible flare-up of the coronavirus.

Every day, we receive calls or emails from family members and persons working in the DDS system saying they are getting little or no information or guidance from the department regarding the crisis.

While the daily updates from DPH on deaths and infections is enormously helpful to the public, that information has limited value to persons with loved ones in the DDS group home system, in particular.

The posted DPH data break the numbers of confirmed cases down by county, age, gender, and in what DPH terms “long-term care facilities,” which are defined as nursing homes, rest homes, and skilled nursing facilities.

In our original email today (April 6) to DPH Commissioner Bharel, we noted that the April 4 DPH update stated that 480 residents of “long-term care facilities” had tested positive for COVID-19, and that confirmed cases were reported in 94 such facilities.

As of April 5, that number in DPH long-term care facilities had risen to 551 persons in 102 facilities.

We specifically asked for daily updates on numbers of deaths and confirmed cases in DDS-funded group homes and ICFs.  “The lack of that information has contributed to uncertainty and anxiety among families and caregivers of DDS clients,” we stated.

Most group home residents not being tested

In her response to Sudders, Lutkevich noted that DDS is not testing group home residents unless they have COVID-19 symptoms.  But many DDS residents cannot advocate for themselves, she said.

Nursing home residents can say when they do not feel well and usually can take their own temperature.  “They can accurately report,” Lutkevich said. “Our folks cannot, and so between the disability they face and DDS’s decision, or inability, to test, this leaves our loved ones ripe for the taking by COVID-19, leaving no evidence behind of why they are ill or have passed or if they are in danger in the first place.

“There is no time here,” Lutkevich’s email added.  “Our loved ones may be dying without anybody reporting that they died from this virus.  That seems very wrong to me.  DDS homes are being targeted with historical neglect and irreverence in the face of a deadly disease.”

Information coming from the media

The latest numbers we have on cases and deaths in the DDS system have come from the media. WGBH reported on April 3 that two DDS clients had died from COVID-19 infections.

In addition, DDS told WGBH News that as of April 3, an additional 67 individuals receiving DDS services and 71 employees working for DDS providers had tested positive for COVID-19. The news station noted that was a roughly 50% increase in positive cases among DDS residents from figures reported to WCVB just one day before; and a nearly 70% increase in infections among employees.

Lutkevich maintained that in a broadcast by WCVB last week, it appeared that Arc Mass Executive Director Leo Sarkissian, who appeared on the broadcast, had “very specific and granular information about statewide group home infections.” But Lutkevich noted that Sarkissian is not a state official and “is not empowered by the law to disseminate healthcare information.  He is being informed by corporate providers who have a relationship with Arc Mass.

“So, in the present environment,” Lutkevich added, “corporate providers are sharing this very important information amongst themselves, but families and guardians and the public generally have no idea as to the coronavirus’s impact on the DDS group home system.

“I urge all of you to rethink your reply and to do the right thing to help our families,” Lutkevich concluded.

This is not a time for the administration to hunker down and circle the wagons. They should be doing all they can to share information and show families and workers that they care.

 

Coronavirus has now claimed 2 lives in DDS system, and the Department still needs a plan

April 4, 2020 2 comments

With the first two deaths recorded in group homes and with dozens of residents and staff now infected with the coronavirus, COFAR is renewing its call for the Baker administration to develop a comprehensive plan to prevent what might be a catastrophic outbreak of the virus throughout the Department of Developmental Services (DDS) system.

COFAR is also calling for COVID-19 testing for all residents and staff and the immediate deployment of cleaning teams to group homes even if it takes a special appropriation.

WGBH reported yesterday (April 3) that two DDS clients have now died from COVID-19 infections.

In addition, DDS told WGBH News that as of Friday, an additional 67 individuals receiving DDS services and 71 employees working for DDS providers had tested positive for COVID-19. The news organization noted that is a roughly 50% increase in positive cases among DDS residents from figures reported just one day before; and a nearly 70% increase in infections among employees.

The WGBH story noted that COFAR has called for the closure of any group homes in which infections are detected and for the placement of individuals in safe alternative facilities. DDS, however, has not identified any such facilities.

COFAR maintains that the Baker administration needs to consider re-purposing available DDS facilities, including vacant space in the two remaining DDS developmental centers, as hospital settings for group home residents who test positive for the virus.

In its statement to WGBH News, DDS said no group homes have been closed due to coronavirus infections, and that testing “is being administered to those who meet the current CDC and DPH testing criteria.” DDS said those criteria include symptoms of infection, “so those not meeting that criteria have not been tested.”

COFAR, however, maintains that new research shows the coronavirus is largely transmitted by asymptomatic people, so all group home residents should be tested.

Last week, COFAR first raised a concern that DDS appears to lack a clear and consistent set of policies for protecting residents in its group homes and other residential facilities from COVID-19.

COFAR is further receiving reports of a loss of services among residents of group homes and a lack of protective equipment for staff in provider residences.

High executive salaries noted

COFAR President Thomas J. Frain maintained that high executive salaries for corporate provider executives show that money is available for protective equipment, better cleaning and disinfectant procedures, re-purposing vacant facilities as hospital settings, and better planning.

“There has been a lack of planning, safety and concern for residents and the working people who are laboring on through this crisis,” Frain said. “Billions of state dollars go to the providers each year and yet people are dying because of poor planning and dirty residences.”

DDS not providing information

COFAR Executive Director Colleen M. Lutkevich said COFAR recognizes that DDS is dealing with an unprecedented situation and is facing a tremendous responsibility to keep its system functioning due to the crisis. At the same time, she said, the Department needs to move faster on a comprehensive plan and needs to do better in providing clear and timely information to families.

There appears to be no information coming from the Department on such things as whether family members can accompany their loved ones to hospitals or other medical treatment facilities. Also unclear is whether DDS or providers notify families or guardians if their loved ones test positive, and whether residents are not tested unless they have symptoms.

DDS Commissioner Jane Ryder did not respond to an email request from COFAR on March 31 with questions about departmental policies and testing. COFAR had also requested data on virus-related infections among DDS clients and staff.

“Timely and accurate information is vitally important for families to have right now,” Lutkevich said. “Withholding this information from the public is not going to reassure people, and it does not provide assurance that the Department and the administration are handling this crisis adequately.”

COFAR has filed a Public Records request to DDS for the information described above.

Residents losing services

Meanwhile, COFAR is receiving reports from families and others that many residents in the DDS system are losing services altogether as caregivers are being ordered by providers in some cases not to enter residential facilities or homes.

COFAR received an internal memo from an employee at one provider agency stating, “We are doing our best to keep the clients in the house safe from the virus, but in the event one of them does get sick, do we have guidelines in place on how to deal with the situation?” Among other problems cited in the memo was a lack of protective equipment for staff.

A source said the provider’s office was closed as of Saturday (April 4), and “no one is basically in charge, no DDS oversight.”

Please call the administration and your legislators

We are asking people to call or email DDS, Governor’s office, EOHHS, and their local state legislators to insist that DDS:

  • Develop a plan immediately to test, isolate, and relocate ill residents
  • Test and quarantine staff
  • Issue requirements on cleaning and disinfecting all residential facilities
  • Make sure appropriate protective equipment is provided to all direct care personnel in provider group homes and state-operated group homes and Intermediate Care Centers (ICF’s)
  • Re-purpose available facilities as hospital settings
  • Make sure services are continuing to be provided to all DDS clients
  • Provide accurate and timely information about the virus and infection rates, as well as DDS visitation and other policies to families, guardians, and the public

Here is some contact information:

Governor’s Office: Governor Charlie Baker
Email: cis@sec.state.ma.us.
Phone Number: 617-727-7030.

Department of Developmental Services: Commissioner Jane Ryder
Phone 617-727-5608
Email: Jane.F.Ryder@massmail.state.ma.us

Executive Office of Health and Human Services: Secretary Marylou Sudders
Phone: (617) 573-1600
Email: marylou.sudders@state.ma.us

You can find contact information for your legislators at: http://www.wheredoivotema.com

You can also send questions or concerns to us by emailing either Colleen Lutkevich at collen.lutkevich@cofar.org, Thomas J. Frain, Esq. at tjf@frainlaw.com, or David Kassel at davidskassel@gmail.com. We will forward your concerns to DDS and EOHHS.

DDS must develop a clear coronavirus policy for residential facilities and providers

March 26, 2020 5 comments

As the number of people infected with the coronavirus continues to grow in Massachusetts, the Department of Developmental Services (DDS) appears to lack a clear and consistent set of policies and plans for protecting residents in its group homes and other residential facilities.

Instead, there appears to be a patchwork of statements and sometimes contradictory policies on the DDS coronavirus website page.

We are concerned that to the extent DDS has developed policies on how residents should be cared for and what precautions should be taken by staff, current protocols will be inadequate to protect residents of any DDS-run or corporate provider-run facility should one or more of the residents become exposed to or infected by the virus.

At least one set of guidelines sent out by DDS to providers this past weekend appears to imply that residents of group homes must be removed from those facilities if even one resident becomes infected. But DDS appears to have no plan for where those residents would be taken.

If residents in several homes become infected, the system could become quickly overwhelmed.

In phone contacts on Wednesday (March 25), DDS officials acknowledged the Department has no long-term plan for relocating infected residents from their residences if the pandemic becomes worse.

We are recommending to DDS that a single, comprehensive plan be developed immediately to address all contingencies in the Department’s residential system, including the possibility of removing infected residents from group homes and placing them in DDS-run hospital settings. That might involve re-purposing closed day program facilities or finding and re-purposing available space in the state’s two remaining Intermediate Care Facilities (ICFs).

We have already heard of instances in which individual providers have opened new group homes or re-purposed existing facilities to be able to respond to those contingencies.

Current guidance documents are contradictory and potentially inadequate 

DDS appears to have been relying on a guidance document from the Department of Public Health (DPH) to cover COVID-19-related precautions and procedures in residential programs in the DDS system.

The March 16 DPH guidelines state, among other things, that patients with known or suspected COVID-19 should be cared for in a single-person room with the door closed.

But COFAR Board President Thomas J. Frain said he is concerned that most group homes are too small to ensure that an infected or ill resident could be effectively isolated from the other residents of the residence.

Meanwhile, a second guidance document, dated March 20, which DDS informed Frain had been sent to all providers this past weekend, appears to imply that any resident of a “household”-sized facility who is suspected of even having had “close contact” with someone known to have the virus should be removed from the residence for 14 days.

Group homes are effectively households, Frain said. If one person does test positive for the virus, everyone else in the residence will essentially have had close contact with them. So the second directive would imply that if one person is exposed or is sick with the virus, everyone would need to be quarantined, meaning they would have to be taken somewhere else for 14 days.

Frain maintained that group homes, which often utilize shared bathrooms, are not large enough to isolate an ill resident and protect other residents from becoming infected by the first resident or by infected staff.

The problem is compounded by the fact that DDS has no plans for how to remove and quarantine infected residents safely, promising only to develop them in the future.

High-level advocacy needed for persons with intellectual and developmental disabilities

COFAR stressed to DDS officials the need to advocate on behalf of DDS clients and their families with Health and Human Services Secretary Marylou Sudders and with Governor Baker. “These most vulnerable members of our society have many competing interests from other populations and agencies, but DDS residents cannot self-advocate,” COFAR Executive Director Colleen M. Lutkevich said.

Lutkevich maintained that the lack of planning and advocacy extends to DDS clients in settings other than group homes such as adult foster care and staffed apartments, and even to individuals living at home with their families. “If a person lives alone in an apartment, and even if DDS staff checks on them – what happens when that person becomes ill?” Lutkevich asked.

COFAR suggests repurposing of available facilities

COFAR is urging DDS to require each provider to develop a plan to remove and relocate residents if group homes are forced to close due to infection and quarantine. Those plans could include the re-purposing of currently closed day programs and their staffs, empty quarters or buildings at ICFs, and other appropriate and available locations.  Several providers are already beginning to work on this, and their models of re-purposing facilities could be shared with other providers.

In addition:

  • DDS and the Baker administration should seek out federal disaster assistance for help with relocation and care of infected group home and other facility residents.
  • Ongoing staff training is needed, particularly if day program staff are retrained to help care for ill residents.

Single set of guidelines needed

We think all of the plans described above need to be part of a single, comprehensive set of guidelines that should be developed for all of DDS’s residential facilities, both state and corporate-provider-run, during the pandemic.  That comprehensive policy document should be communicated in writing to all facility managers.

A primary function of DDS is to make sure its residents are protected, whether in a state-operated group home, a corporate-operated group home or an ICF. DDS regulations define a “serious risk of harm” as “a significant exposure to serious physical injury or serious emotional injury.”

DDS’s current policies do not inspire confidence that the department is currently able, in this ongoing pandemic, to meet the standards for protection and safety that are codified in its statute and regulations.

Reducing the impact of the coronavirus on persons with developmental disabilities

March 20, 2020 1 comment

As the conoravirus pandemic grips our nation and so many other countries around the world, we are joining with other advocacy groups in urging policy makers and elected officials to be mindful of the especially devastating impact this illness can have on persons with intellectual and other developmental disabilities (I/DD).

We are trying to do our part in making the public aware that because so many people with I/DD have underlying medical conditions, they are likely to be among the groups with the highest rates of mortality from the COVID-19 virus.

New COFAR coronavirus information page and recommendations on testing and visitation 

Today, we launched a new coronavirus information page on our website at www.cofar.org that is intended as a resource for families seeking information about the coronavirus and how to advocate for and protect their loved ones in the care of the Department of Developmental Services (DDS).  You can link directly to the page here.

One of our main recommendations on the new page so far is that if a resident, or staff member caring for a resident, tests positive or is exposed to the coronavirus, family members and guardians should be informed immediately.

We are also concerned that DDS and at least some residential providers may not be implementing uniform policies on visitation of loved ones and testing of healthcare workers in group homes and other residential settings.

We are recommending that all DDS residential facilities adopt the state Public Health Department’s policy regarding access by healthcare workers to nursing homes. Those facilities must confirm that the healthcare worker does not have a fever by taking each worker’s temperature upon arrival for each shift.  The healthcare worker’s temperature must be 100.3 degrees Fahrenheit or lower in order to enter the facility and provide care.

We are also recommending that consideration be given to visits by family and guardians and that they be subject to the same restrictions as those placed on staff. In general, we recommend that visits be relegated to outdoor areas (weather permitting), after hand-washing and maintaining at least a 6-foot social distance between people.

Federal legislation on coronavirus needs to take people with I/DD into account

We are also joining other advocacy organizations in noting that while Congress has so far passed two major coronavirus-related relief bills, more help is needed to support people with disabilities and their families.

We are urging our members to call or email their congressmen/women and senators and ask them to support increased federal funding for coronavirus-related relief programs for persons with developmental disabilities.

Congress has so far passed two major coronavirus bills, but more help is needed to support people with disabilities and their families. The most recent legislation enacted is the Families First Coronavirus Response Act, which includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic
  • $250 million in additional funding for food programs, including home delivery food programs, for the elderly and disabled
  • Waivers to some requirements for school lunch programs
  • Waivers to work requirements to be eligible for SNAP food programs
  • New, temporary requirements that employers with more than 20 employees offer some paid sick leave time to their employees
  • Extensions to, and additional funds for, unemployment benefits
  • Free COVID-19 testing without co-pays or deductibles

But the legislation does not include funding for caretakers for adults with disabilities or seniors whose programs have closed or whose workers are sick.

A major stimulus package was still pending today (March 20) in Congress that will reportedly provide cash payments directly to most Americans. There are many questions, however, about what that legislation will include. We want to make sure the pending legislation covers additional money for caretakers of adults with disabilities whose programs have closed or whose workers are sick.

We are also requesting that people ask members of Congress to support increased asset limits for people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid. Because of those asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid benefits.

You can find your elected representatives here: https://www.usa.gov/elected-officials.

You can also send questions or concerns to us by emailing either Colleen Lutkevich at collen.lutkevich@cofar.org, Thomas J. Frain, Esq. at tjf@frainlaw.com, or David Kassel at davidskassel@gmail.com. We will forward your concerns to DDS.

DPPC report appears biased in downplaying evidence of abuse in choking case 

March 12, 2020 Leave a comment

Last April 19, Michael Person arrived at his daughter, Maria’s, group home in Peabody and found her unresponsive and breathing shallowly.

A member of the group home staff was at Maria’s bedside, unaware that there was a problem, and was feeding her calcium through her g-tube. The group home is run by the May Institute, a corporate provider to the Department of Developmental Services (DDS).

Maria, who is 22, has a genetic abnormality that resulted in an intellectual disability and complex medical issues, including seizures and a susceptibility to aspiration pneumonia.

Michael, who knew immediately that Maria’s life was in danger, said he lifted her up, took her out of the residence and drove her to his own home where he keeps a tank of oxygen for her. After reaching his home within six minutes, he administered the oxygen. He then called 911.

Maria was stabilized by the local ambulance company and rushed to Winchester Hospital, and was then transported to Boston Children’s Hospital by the latter hospital’s critical care transport team. She was placed on life support in the Boston Children’s Hospital Intensive Care Unit for 14 days, and remained in the hospital for a total of 27 days.

Although Maria was diagnosed with aspiration pneumonia and needed intubation, she survived and is now living in a state-operated group home run by DDS.

Michael and Maria Person1

Michael and Maria Person. Michael believes Maria would have died of aspiration pneumonia within half an hour if he had not arrived when he did at her group home. Yet DPPC found no evidence of neglect in the case. (Photos courtesy of Michael Person)

The Disabled Persons Protection Commission (DPPC), which investigated the incident, found no substantiated abuse or omission of care in the case. The DPPC report had labeled two of the group home staff members as “alleged abusers” or “Alab1” and “Alab2.”

The DPPC report stated that the medical team at Boston Children’s Hospital was not able to say specifically what caused the aspiration pneumonia, or if any delay in treatment had caused a worsening of Maria’s condition.

“Without evidence of a specific cause of the condition, no connection can be made to (the alleged abusers) and any reported act or omission on their part,” the report concluded. The report also concluded that there was no act or omission on Michael’s part in the delay in Maria’s care.

Recommendations were included in the report, with no further specifics, for “retraining all staff members on choking prevention” and individual meal plans, and ensuring that documentation regarding specific care-giving needs are “clear and in place” before an individual moves into a residence.

Michael believes the DPPC report was deficient, and that the group home staff were at fault in failing to recognize Maria’s obvious symptoms of respiratory distress. Had he not happened to arrive at the group home at the time he did, Maria would surely not have survived for more than another half hour, he maintains.

Michael also believes that Maria contracted aspiration pneumonia because her food was prepared incorrectly by the group home staff on April 18, the day before he found her unresponsive. She can only eat a specially prepared pureed diet of “honey thickness.”

The day before Maria was found unresponsive by Michael, she vomited in her day program after eating a lunch prepared by the group home staff. The DPPC report acknowledged that the next morning, she had a cough and congestion, and that the staff later observed spit bubbles in her mouth; but the staff did not seek advice from medical professionals about those symptoms.

After reviewing the DPPC report, we share a number of Michael’s concerns about it. Overall, the report does appear to downplay key evidence that might have the potential to substantiate abuse in this case.

For instance, while the report stated that the medical team at Boston Children’s Hospital was unable to say what had caused the aspiration pneumonia, it is not clear that the investigator interviewed members of the team directly. The report stated that the investigator spoke to a hospital official whose identity was redacted and who had previously spoken to Maria’s medical team.

It is also hard to believe the reported assertion that delaying medical care would not necessarily worsen aspiration pneumonia.

There are also a number of turns of phrase in the report, as discussed below, that raise questions whether the investigator held a bias against Michael.

DPPC defines “abuse” as “an act or omission that results in serious physical or emotional injury.” “Omission” is defined as “a caregiver’s failure, whether intentional or not, to take action to protect a person with a disability…to the degree it causes a serious injury.”

It seems clear in this case that the staff in Maria’s group home failed to take action to protect her despite the fact that she was exhibiting potential signs throughout the day of respiratory distress, and that she experienced a serious physical injury as a result.

Even if it wasn’t clear early in the day that her coughing, congestion, and spit bubbles were signs of a potentially serious illness, the staff didn’t seek medical advice about those symptoms. By 3 p.m., when Michael arrived, a staff member was then not attentive enough to notice Maria was unresponsive and potentially in a state of medical distress even as she was feeding her though a g-tube.

On Monday (March 9), I sent an email to Andrew Levrault, DPPC’s assistant general counsel, inviting comment on the case and the commission’s investigation.

Also on Monday, I emailed Lauren Solotar, president and CEO of the May Institute, asking for comment on the case and any measures the provider has taken to make sure this kind of incident doesn’t happen again. Thus far, I haven’t gotten a response from either Levrault or Solotar.

The following are some of our specific concerns about the DPPC’s report in this case:

The DPPC report appears to have attempted without evidence to discount Michael’s assertion that Maria was in a crisis state when he found her

The DPPC report appears in several instances to have attempted to discount Michael’s assertion that he believed Maria was in a state of crisis when he first saw her in the group home on April 19. The implication of the report in those instances appears to be that because Michael did not really believe Maria was in crisis, the staff cannot be blamed for failing to recognize she was in crisis either.

Yet the evidence clearly shows that Maria was unresponsive and possibly not breathing, and Michael was acting on that basis. Michael insists that he knew from the moment he saw Maria that she was in distress.

Maria recovering at BCH

Maria recovering at Boston Children’s Hospital from the aspiration pneumonia.

That there was a crisis situation is evident in the reports from the Wakefield Fire Department and Acton Ambulance, which arrived at Michael’s house at about 3:30 p.m. Those reports described Maria as “unconscious,” “unresponsive,” and being in a “coma.” Maria was diagnosed in Winchester Hospital Emergency Room as being in respiratory distress and having pneumonia.

But in one instance, the DPPC report included a statement from one of the alleged abusers that after Michael arrived at the group home, he “chit-chatted” with her, implying that he didn’t show a sense of urgency at the time.  The report added that “Alab1 reports (Michael) conversationally told her he’d likely take (Maria) to the hospital over the weekend.” (My emphasis.)

Michael insists that he never chit-chatted or spoke conversationally about taking Maria to the hospital. He told COFAR that upon arriving at the group home, he walked into his daughter’s room and immediately knew something was wrong. “I saw she was passed out, gray and clammy,” he said, adding that when he picked Maria up, “her head just flopped over. There was no chit-chat,” he said.

The report further quoted “Alab1” as saying Michael told her “it looks like a nebulizer weekend,”  and that he “was going to go home, pack a bag and take her to Boston Children’s Hospital.”

Michael similarly denies he held any such conversation with the staff member. The DPPC report, however, didn’t note Michael’s denials. Michael contends the investigator never asked him to respond to claims made about his statements by the alleged abusers.

In another instance, the report included the following statement regarding Michael’s interview with the investigator: “(Michael) reported that (Maria) was in extreme medical crisis, yet he drove her to his home for oxygen, then called 911 for transport.” (My emphasis.)

The word “yet” implies that there is a contradiction between what Michael reported and what actually happened. But the evidence does not show any contradiction. Michael said he drove her to his home because he wanted to get her oxygen as quickly as possible.

That use of the word “yet” was not a fluke or simple carelessness in language because the report used similar language to make virtually the same point in other instances.

In one of those cases, the DPPC report did not even state that Michael’s purpose in driving Maria to his home was to get oxygen for her. According to the report, a DDS official stated that:

(Michael) told him (the DDS official) he thought it was a ‘medical emergency’ when (Michael) arrived to pick up (Maria); however (Michael) did not call 911 until after (Michael) drove (Maria) home, which according to (Michael) took six minutes. (My emphasis.)

In yet another instance, the DPPC report stated that Michael reported that Maria was “gray in color, lifeless, and had weak limbs.” But the the report followed that with the statement, “However,  Alab1 states when (Michael) arrived to pick up (Maria), (he) …provided Alab1 with tips regarding Maria’s glasses, baseline, and AFOs (ankle-foot orthosis braces).” (My emphasis.)

Once again, Michael denied that he held such a conversation with the staff member.

Michael told COFAR that he “panicked” when he saw Maria and rushed out of the house, carrying her to his van. He said that while his house is 14 minutes away from the group home, he held his hand on the horn the entire way to his house and ran every red light. He got to his house in six minutes, ran inside and got the oxygen and administered it to Maria.

The apparent implication of the DPPC report that Michael didn’t perceive Maria to be in distress because he “chit-chatted” with one of the alleged abusers, provided her with tips about Maria’s care, and then wasn’t concerned enough about the situation to immediately call 911 is at odds with what Michael says happened and what the evidence indicates happened.

At another point, the report did acknowledge that another staff member, who was apparently not involved in Maria’s care, stated that they knew something was wrong because “(Michael) was going too fast in taking (Maria) to his van.”

The DPPC report accepted what may be second-hand claim that a delay in getting medical care would not necessarily have worsened Maria’s condition.

The DPPC report stated that the investigator interviewed a Boston Children’s Hospital official who had spoken to Maria’s medical team at the hospital, and that the team members were “unable to say what was the cause of Maria’s pneumonia or if the delay in obtaining medical care may have worsened her condition.” The identity of the hospital official who was interviewed by the investigator was redacted in the report.

The language of the report implies that the DPPC investigator did not directly or personally interview Maria’s medical team, but rather relied on a second-hand description of what the team members believed to be the case. It that was the case, it would be a glaring shortcoming in the report.

The DPPC report’s main argument for its finding that there was no abuse in the case was that Maria’s medical team was not able to say specifically what caused the aspiration pneumonia, or if any delay in treatment had caused a worsening of Maria’s condition.

It’s hard, in particular, to imagine a case involving aspiration pneumonia in which a delay in obtaining medical care would not worsen an individual’s condition. Maria clearly needed immediate medical attention when Michael found her unresponsive in her group home.

In our view, the apparent failure to directly question the medical team about those reported claims raises significant questions about the veracity of the report’s conclusions.

The DPPC report appeared to downplay the staff’s responsibility for either spotting signs of aspiration or seeking medical advice

As noted, the DPPC report stated that on April 18, after eating lunch at her day program, Maria vomited.

The DPPC report stated that while two individuals, whose identities were redacted, assessed Maria on April 18, “neither… thought she needed medical attention.” And while an individual, whose identity was also redacted, did consult Michael after Maria vomited that day, that individual also “did not follow up with…any other medical professional.”

According to the DPPC report, a May Institute employee, whose identity was redacted, stated there were no indications Maria was in distress at that time or that she needed to be hospitalized. However, the employee instructed the group home staff to monitor Maria for worsening symptoms after she had vomited, including checking for respiratory distress.

The next morning, April 19, the group home staff decided to keep Maria home from her day program, and noted that she seemed lethargic and was congested and sneezing, and had a runny nose.  The DPPC report stated that the group home staff contacted Michael regarding those symptoms, and Michael responded that Maria appeared to be sick and they “should let (her) rest.”

At 12:20 p.m. on April 19, the report stated, one of the staff members noticed spit bubbles in Maria’s mouth. The report stated that at that point, “Nursing advised staff to follow up with (Michael), which staff did. However, (an individual whose identity was redacted) was not notified…and there was no followup with any other medical professional,” the report stated.

As the DPPC report had stated, the staff was on notice that they should be checking for respiratory distress, and Maria was known to be at risk of aspiration pneumonia. Yet when Maria began to display symptoms that were consistent with that, the staff  repeatedly consulted Michael rather than medical professionals.

The DPPC report, in fact, included, as an “additional finding of risk,” that:

During (Maria’s) short time in the (May Institute) residence, the agency staff sought guidance from (Michael) rather than feeding specialists or outside medical professionals with regard to (Maria’s) feeding protocols and medical diagnoses.

It appears that the DPPC was both crediting the staff for consulting with Michael regarding Maria’s symptoms and criticizing the staff for doing so. Michael was not at the residence at the time to observe Maria until he arrived in the afternoon when she was already unresponsive. He is also not a medical professional.

The report downplayed the possibility that Maria may have aspirated on wrongly prepared food

The DPPC report included a statement from a Boston Children’s Hospital employee, whose identity was redacted, that Maria could aspirate if food was prepared too thick. The report then stated that the hospital employee added that there were “multiple other ways she could have aspirated.”  None of those other ways in which she could have aspirated were listed.

Michael said he believes the cause of Maria’s aspiration pneumonia was likely improperly prepared food by the group home, which Maria ate for lunch the day before she became unresponsive.

Maria with pureed foods

Maria at Boston Children’s Hospital with pureed foods and liquids that she is able to consume.

The DPPC investigator interviewed a day program staff who said there were times when Maria’s food “wasn’t good” when she arrived there and they would reprocess it. The report also interviewed one individual, whose identity was redacted, who said there was a clinical note that Maria aspirates on all liquids unless it is prepared to a honey consistency.  Another individual, whose identity was also redacted, said Maria was at risk of aspirating on “all oral intake” and needs smooth purees.

The report further stated that Michael reported that there were lumps in Maria’s food as well as that her food was too thin and runny on April 12, and a photo confirms that.

However, the report concluded, as noted, that there wasn’t sufficient evidence to identify the food prepared on April 18 as the cause of Maria’s aspiration pneumonia.

It appears that the DPPC investigator did not interview the alleged abuser, who had prepared Maria’s food on April 18, about issues involving the food preparation until July 26, more than three months after the aspiration incident.  At the time of that interview, the alleged abuser said she couldn’t recall what food Maria had been given, according to the report.

The DPPC report added that Alab1 stated that although Michael had been critical of the texture of the food prepared on April 12, it was the same texture as the food Alab1 had prepared on April 10 and had fed to Maria that day and the next.

The report did not explain how Alab1 was able to remember the texture and consistency of the food she prepared on April 10, but could not remember what food she prepared on April 18. That latter date was the day Maria vomited after eating lunch.

Perkins School had emphasized need for food to be pureed

Maria had actually moved into the May Institute residence on April 10, only nine days before the incident occurred in which Michael had found her unresponsive. She had previously lived at the Perkins School for 19 years.

Michael said the Perkins School staff knew how to prepare Maria’s food to the proper consistency to prevent her from choking on it. The May Institute staff, however, often made her food either too lumpy or else too runny, Michael said. Either way, it could cause Maria to choke.

A “transition portfolio” prepared by the Parkins School for Maria mentions in at least two places the need for Maria’s diet to be “puree (no lumps).”

Michael was only fully interviewed once by the DPPC investigator

Michael contends that the DPPC investigator fully interviewed him only once, on April 23, and never re-interviewed him to respond to statements made by the alleged abusers concerning his statements or sense of urgency at the group home.

In an appeal of the findings of the DPPC report, which Michael filed on November 20, he stated that he had “highly relevant first-hand knowledge of events in question, which were not gathered by the investigator.”

In a January 7 letter denying Michael’s appeal of the findings in the DPPC report, Levrault, DPPC’s assistant general counsel, stated that the investigator “had phone and email contacts with (Michael) on five occasions subsequent to (the April 23 interview). Thus (Michael) had ample opportunities to provide information to the investigator concerning the allegations.”

However, Michael contends that with one exception, he had himself initiated the subsequent calls and email contacts to ask only about the status of the investigation. (He said the investigation took eight months, yet he had initially been told it would take only one month.)

That exception was on July 19, Michael said, when the investigator called him to ask if he had any documents concerning how Maria’s food should be prepared. He provided several documents to the investigator indicating that her food had to be pureed, lump free. Other than that, he said, the investigator never asked about issues in the case.

In particular, Michael said, the investigator never followed up with him to discuss statements made by the alleged abusers about him.

Levrault’s appeal denial letter did not actually say that Michael was further interviewed during the subsequent phone calls and email contacts, but only that he had “multiple opportunities to provide information to the investigator concerning the allegations.”  In fact, Michael did provide additional information, but he claims it wasn’t considered in the report.

The case appears to present evidence of omission of care

In his denial of Michael’s appeal, Levrault noted DPPC’s definition of “abuse” as “an act or omission that results in serious physical or emotional injury.”

As I noted above, that seems to be an accurate description of what happened in this case. The staff took no action to protect Maria even though she was in a state of physical distress. The minute Michael walked into the room he recognized the signs of that distress. That the staff person was right there attempting to feed Maria, indicates, at best, a lack of basic training in their job.

Moreover, that staff person and potentially other staff in the residence appear to be at fault in failing to seek medical attention earlier in the day and potentially the day before when Maria vomited after eating lunch.

We have frequently called for more resources for DPPC because the commission is the only independent state agency that is authorized to investigate abuse of disabled adults in Massachusetts. But cases like Maria’s call into question whether DPPC, like DDS, gives deference to providers in its investigations and discounts evidence provided by family members and guardians.

All too often, we hear complaints from those family members that abuse investigations done by DDS and DPPC did not fully consider the evidence and wrongfully came to the conclusion that no abuse had occurred.

This case certainly appears to provide evidence to support that claim that the state’s processes and procedures for investigating abuse of the developmentally disabled do not always operate fairly or impartially, and that reforms of the system are needed.

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