COFAR blog

[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.

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.

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.

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.