COFAR asking Baker administration whether DDS residents and staff will be among first to get COVID vaccine

December 4, 2020 4 comments

In the wake of a recommendation earlier this week from a federal advisory panel that healthcare workers and residents of long-term care facilities get the first doses of the coronavirus vaccine, COFAR has asked the Baker administration whether that would include residents and staff in the Department of Developmental Services (DDS) system.

So far, we haven’t gotten an answer.

According to a Politico article, the recommendation on Tuesday of the advisory panel to the Centers for Disease Control (CDC) isn’t binding. But the article stated that many states that are putting together vaccination plans are looking to the CDC as a guide.

In an email on Wednesday morning to state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, I asked whether the Baker administration will include DDS residents and staff in its plans for distribution of the first doses of the vaccine that Massachusetts gets.

It appears the primary thrust of the recommendation on Tuesday of the CDC panel is to ensure the early vaccination of residents and staff of nursing homes and other long-term care facilities for the elderly.

Protecting residents of nursing homes from COVID-19 has been a priority of the Baker administration as well, given the large number of those residents that have died from the virus.

In my email to Sudders and Ryder, I noted that we support the early distribution of the vaccine in nursing homes, assisted living facilities, and correctional centers. But we want to make sure the DDS system is included in those distribution plans, and that it is clear that both group homes and developmental centers in the DDS system fall into the category of long-term care facilities, in the view of the administration.

We have long been concerned that the administration has overlooked the DDS system in its efforts to protect the state in general from the impact of the COVID pandemic.

The Politico article stated that Trump administration officials say that up to 40 million doses of vaccines from Pfizer and Moderna will be available by the end of 2020. That is enough to vaccinate 20 million people. Between 5 and 10 million additional doses are anticipated to be available per week in early 2021.

Pfizer and Moderna are both seeking FDA authorization for their vaccines.

End to lockdown

The vaccinations will obviously bring an end to the ongoing isolation of DDS clients in group homes and developmental centers. Those residents have been subjected to increasingly strict and often inconsistent lockdown measures during the current surge of the virus.

Most of the increased COVID cases in the DDS system have been among staff, but the burden of the lockdown has fallen most heavily on the residents themselves.

Deaths among DDS residents do not currently appear to be rising; but, as of the latest two-week surveillance testing period ending November 25, the number of staff testing positive for the virus in DDS provider-run group homes had risen from 504 to 526.

As of December 1, the number of residents testing positive in provider-run group homes actually appeared to be leveling off from the week before, at 175.

We’re sure that all of the residents in the DDS system and their families would like to know how the Baker administration is interpreting the CDC’s definition of long-term care facilities with regard to distribution of the vaccines. We hope we get an answer from the administration soon.

Outdated DDS visitation guidance leads to contradictory provider policies

December 1, 2020 1 comment

The Department of Developmental Services appears to be leaving it up to its residential providers to impose family visitation restrictions in light of the latest surge in COVID-19 cases in the DDS system.

This appears to have resulted in inconsistencies and contradictions among visitation policies among different providers, and potentially overly restrictive policies on testing and quarantines in some cases.

The last time DDS appears to have updated its visitation guidance was September 23, prior to the current COVID surge.

I sent an email query on Monday (November 30) to DDS Commissioner Jane Ryder, asking whether she intends to update the Department’s September 23 guidance on visitation, and whether some standardization of requirements for indoor visits and quarantines might be necessary. I haven’t yet received a response to my query, which was also sent to the DDS ombudsman.

Indoor visits banned, contradicting DDS guidance

At least three providers have recently banned indoor visits entirely by family members, and enacted varying requirements for testing and quarantining group home residents who were taken by family members home for Thanksgiving and other visits.

One provider is banning all visits of group home residents to their family homes until further notice.

The September 23 DDS guidance permits indoor visits by family members and allows off-site visits by residents.

The same provider, however, has not allowed any indoor visits since March, according to a family member. The provider has also sharply limited outdoor visits, and, as noted, banned out-of-group home visits.

In a directive issued last week, a second provider stated that visits to its group homes would only be permitted outdoors or via Zoom or Facetime.

Another provider stated that on-site visitation was being suspended until further notice “due to rising COVID rates nationally and in the state.”

Contradictory directives on quarantines after off-site visits

Different providers appear to have adopted widely varying policies on quarantining residents after the residents have left group homes even for short visits

One provider allows off-site visits by residents, but has lately required a three-day quarantine of any resident who is taken out of the group home.  Another provider now requires a 14-day quarantine for any resident taken out of state.

As one family member said, however, it is very upsetting to residents to be subjected to multi-day, in-room isolation after returning to a group home, and it results in “very little benefit.”

The September DDS guidance does not require quarantines if residents are taken off site, but states only that they must be monitored for 14 days after returning to their group homes. Quarantines are required only if the resident shows symptoms.

Providers have different requirements on testing after off-site visits

Providers similarly appear to have contradictory policies regarding COVID testing after off-site visits.

One provider has required that residents taken off site receive a negative COVID test less than 48 hours before returning to a group home or other DDS-funded setting.

Two other providers, however, appear to require residents taken off site to wait a minimum of 72 hours between getting tested and returning to the group home.

One of those providers requires the resident to remain at the family home for 14 days before even getting the test. Even if the test is negative, the provider’s directive states that the resident must remain in isolation in the group home for an additional 72 hours and then needs a second COVID test.

Staff don’t appear to be subject to similar restrictions

As we have reported, the biggest jump in COVID infections in the DDS system, in terms of absolute numbers, appears to be among staff.

The number of COVID-19 positive staff in all provider-operated group homes (in DDS and other agencies in the Executive Office of Human Services) rose by more than 100% in the two-week period ending November 11.  Yet, it is clear that staff regularly go in and out of group homes without the need for quarantines, in particular, unless they are symptomatic.

We have long suspected that the biggest risk to residents in the DDS system does not come from family members who visit them either outdoors or indoors under controlled conditions, but from staff who face few such restrictions.

We think DDS needs to reassess where the risks in the current COVID surge really lie, and to adjust their guidance accordingly. The burden imposed by restrictions on visits should not fall disproportionately on the families and the residents themselves.

Moreover, that updated guidance should be followed by all providers.

State data appear to show COVID has been the leading cause of death this year in the DDS system

November 24, 2020 Leave a comment

Data obtained by COFAR from the state under a Public Records Law request unsurprisingly appear to show that COVID-19 has been the leading cause of death in the Department of Developmental Services (DDS) system since January.

Despite that, deaths among residents in the DDS system fortunately do not appear to be currently rising at as rapid a rate as COVID infections are rising among those residents. Most of the COVID-related deaths appear to have occurred during the first peak-COVID period in the state as a whole, in April and May.

The highest rate of COVID infection in the DDS system currently appears to be among staff. But the current death rate, if any, among staff isn’t publicly known. The Baker administration does not publish any current data on deaths among staff in the DDS system.

Data provided by the Disabled Persons Protection Commission (DPPC) under a public records request indicate that of the 650 residents in the DDS system who were reported to DPPC to have died between January 1 and November 4 of this year, the largest single reported cause of death has been COVID-19.

A total of 143 of the 650 reported deaths in the DDS system — or 22% — were reported to be due either solely or partly to COVID. That total includes numbers of cases where COVID was one of multiple reported causes.

Meanwhile, the number of COVID-infected residents and staff has surged in the DDS system in recent weeks. As shown in the first graph below, the number of DDS provider-operated group home residents testing positive for COVID-19 rose from less than 20, in one week in mid-October, to 131 as of the seven-day period ending November 17.

The graphs are based on weekly online state facilities data from the administration.

As the second graph shows, the number of COVID-19 positive staff in all provider-operated group homes (in DDS and other agencies in the Executive Office of Human Services) rose from 245 in the two-week surveillance testing period ending October 28, to 504 in the two-week period ending November 11.  That is an increase over the previous two-week period of more than 100%. The number of COVID tests increased over the previous period by only about 12%.

 

Source: EOHHS online weekly state facilities reports

At the same time, deaths among residents in the DDS system do not appear to be increasing at anywhere near the same rate as COVID infections. The rate of deaths of residents has stayed at less than five deaths per week in the DDS group home system since the end of October.

Between five and 10 deaths were recorded in the state’s two developmental centers in November, which does mark an increase over the absence of any deaths in the centers between the end of June and this month.

Data on causes of deaths are difficult to interpret

Data on causes of deaths, provided by DPPC, are not always clear and can be difficult to interpret. The data are based on causes of death as reported at or near the time of death to DPPC, and therefore appear to be unofficial.

As a result, it appears possible that some causes of death listed in the DPPC’s records may differ from causes listed in actual medical records of the deceased clients. However, DDS, which holds those medical records, would not disclose even aggregated numbers from those records of causes of death to us. (More about that below.)

All deaths in the DDS system must be reported at the time to DPPC; and DPPC did agree to disclose the aggregated numbers from those reports of the causes of those deaths.

As the chart below based on the DPPC data shows, COVID appears to have been the leading factor in causes of deaths of DDS clients since January, as reported to DPPC.  Respiratory failure was the second highest factor, followed by cardiac arrest, cancer, and aspiration pneumonia (caused by choking).

Source: Reports to DPPC

One other problem we had in trying to interpret the DPPC data was that many different types and combinations of causes of death were listed by that agency. As a result, we had to try some creative approaches to grouping the data.

For instance, we grouped respiratory failure and pneumonia into one category, and counted 96 deaths in that category, or 14.8% of the total deaths between January 1 and November 4. We would note that if COVID was listed along with respiratory failure or pneumonia, we counted it in the COVID category as well.

That appears to raise a possibility that the total of 143 COVID deaths would be an underestimate of the real number of COVID-related cases in the DDS system if COVID was actually a factor in more of the respiratory failure cases than was reported. It seems possible that in some of those cases, COVID may have been a factor, but wasn’t reported or known at the time to be a cause.

Death rate dropped in the summer

Most of the deaths that have occurred in the DDS system that have been either fully or partly attributed to COVID appear to have happened in April and May. As the graph below shows, those deaths rose sharply from less than five in the second half of March to a total of 56 in each of the months of April and May.

The deaths just as abruptly tailed off from June through the middle of October. It remains to be seen whether what appears to be a slight uptick in the number of deaths in the second half of October will continue.

Source: Reports to DPPC

 

Loophole prevents release of DDS data

As noted above, the data from DPPC on deaths are based on reports to the agency, sometimes on the same day as each death occurred. DDS, which apparently has official causes of death in its records, denied our request for the numbers of clients per month who died from all causes, including COVID.

Due to what we see as a loophole in the state’s Public Records Law, the state’s public records supervisor reversed herself last month, and gave DDS blanket authority to deny our request for that information. DDS claimed the information is kept in confidential patient records and is therefore confidential.

In asking for that same information from DDS, we were not asking, however, for information that could reveal the identify of any particular client. Yet the Public Records Law contains a blanket exemption, known as “Exemption (a),” that states that if a state agency has an enabling statute that says its records are private, that statute overrides the Public Records Law.

(The DPPC has been trying to change its enabling statute to explicitly state that its records are not public, possibly for the reason above. That agency apparently wants to be able to cite Exemption (a) in many records requests. We have opposed DPPC’s attempt to change its statute.)

As we’ve said before, we think there is a compelling need, particularly during the ongoing crisis over the virus, for government to be open and transparent with the public about the impact of the pandemic on the lives and health of ourselves and our loved ones. We see no reason for the apparent bunker mentality that has been adopted by agencies such as DDS in that regard.

DDS seeks to remove mother as co-guardian of her son after she saves his life

November 12, 2020 41 comments

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Nick Alemesis and his mother, Cindy

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home.  She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

Cindy said the other co-guardian for Nick, who is apparently paid by DDS, appears to live in Florida, and has been uninvolved in Nick’s care. Cindy sought unsuccessfully to remove that co-guardian last year in probate court.

It isn’t clear whether the current move by DDS to remove Cindy as co-guardian is in retaliation for her attempt to remove the other co-guardian. It is also unclear whether DDS wants to make that individual Nick’s sole guardian.

I emailed a request for comment on this matter on Tuesday (November 10) to DDS Commissioner Jane Ryder, and to Barbara Green Whitbeck, DDS assistant general counsel. Whitbeck signed the Department’s petition to the probate court to remove Cindy as co-guardian. Neither Ryder nor Whitbeck has yet responded to my request for comment.

Support from church pastor 

Keith Phemister is pastor of the Lighthouse Baptist Church in Hudson, NH, which Cindy, her husband, and Nick have attended for the past 20 years.

Phemister strongly supports Cindy’s remaining as Nick’s co-guardian, and said he is baffled by DDS’s claim that she hasn’t made decisions in his best interest.

Phemister said Cindy can be abrasive at times, and that he has spoken to her about it. But he maintains her abrasiveness is because she feels that her son is being mistreated, and that she sometimes will speak her mind without thinking about how others might react.

“I know she (Cindy) is fighting for her son,” Phemister said. “It’s possible they (DDS) see that as a negative, but she loves her son and is fighting for him, and they’re holding that against her.”

Phemister said that on the evening Nick got ill in December 2018, Nick had attended Wednesday church services with Cindy. The church has a van that picked Cindy up from her home in Lowell, and picked up Nick from his group home in Dracut, and took them to the church in Hudson, NH. After the service, Nick started feeling ill, and was sweating and vomiting on the van ride back to Dracut.

Phemister said Cindy was so concerned, she had them detour and take Nick to Lowell General Hospital. Nick was later transferred to Mass. General. Phemister said the medical staff apparently told Cindy that Nick would have died had he not been brought to the hospital that day.

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

In a written statement, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he examined Nick on December 17, 2018, two days before Nick fell ill and was taken to Lowell General.

During the December 17 visit, Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m.

Ahmed’s statement added that “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, the doctor’s statement says Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, by then it was too late. Nick fell ill during the church service in the evening of December 19. During the ride back in the van, Nick was first taken on Cindy’s insistence to Lowell General Hospital. He was transferred a few hours later to Mass. General.

A document from Mass. General shows Nick was admitted on December 20 with fever, nausea, vomiting, lethargy, and abdominal pain. That was the start of an eight-month stay in the hospital.

At Mass. General, Nick had 13 operations to remove and replace the shunt in his brain, and seven procedures on his throat due to an infection caused by his trach tube, Cindy said.

According to the Mass. General document, Nick also underwent a subsequent operation for a perforated bowel caused by a piece of the infected shunt.

DDS and provider apparently failed to report hospitalization

Given Dr. Ahmed’s written statement regarding the missed ultrasound appointment, the LifeLinks staff were knowledgeable and responsible for bringing Nick to the appointment, and failed to do so – a potentially negligent act that could well have cost him his life.

Cindy said she immediately reported those circumstances to officials at DDS. It appears, however, that neither the provider nor DDS reported the matter to the Disabled Persons Protection Commission (DPPC), as required by the DPPC’s enabling statute and regulations. As a result, DPPC never investigated the matter or authorized DDS to investigate it.

In response to a query from Cindy earlier this month, DPPC responded that it had received no complaint report involving Nick’s hospitalization until Cindy herself filed a complaint about it last month.

The DPPC’s statute and regulations state that “mandated reporters” must report any situation resulting in a serious physical injury if there is reasonable cause to believe it was due to abuse or neglect.

Missed appointments continue

Cindy said she has been frustrated that the group home staff continued to miss appointments for Nick, even after his release from the hospital in July 2019.

A written statement from Jonathan Moray, a doctor with New England Neurological Associates of Lawrence, stated, for instance, that Nick missed an appointment on November 27, 2019, just a few months after he got out of the hospital.

A written statement last year from Tufts Dental School states that they could not schedule any further dental appointments for Nick “due to lack of updated medical paperwork.” That paperwork is required to be updated yearly, and nothing was on file since 2017, the Tufts letter stated.

Cindy said Nick’s teeth are still damaged from a trach tube that was inserted during his hospitalization.

DPPC screens out recent complaint

Unable to get an adequate resolution to her concerns about the missed appointments, Cindy filed the complaint last month with DPPC. But the agency screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form states that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

DDS attorney threatened to take away co-guardianship in 2019

Cindy said Barbara Green Whitbeck, the DDS assistant general counsel, first threatened to take away her co-guardianship of Nick last year, and falsely accused her of trying to improperly feed Nick while he was hospitalized.

Whitbeck has represented DDS in the ongoing probate court fight in which Cindy had sought to remove the DDS co-guardian. Cindy said that when she informed Whitbeck during a private meeting of her concerns about the other co-guardian and the alleged negligence of the provider, Whitbeck dismissed those concerns.

“She (Whitbeck) said the (LifeLinks) staff did nothing wrong,” Cindy said. “Then she accused me of feeding my son and keeping him sick in (Mass. General).” Cindy said she got up at that point to leave the meeting, and Whitbeck threatened her, saying if she left, she would lose her co-guardianship.

Cindy said the charge of improperly feeding Nick was untrue and “came out of left field.”

Cindy said that while she was at Nick’s bedside in the hospital, the nurses trained her in how to suction his trach tube and how to put his medication, which was crushed up in a type of pudding, into his G-tube. His trach had to be sanctioned every 20 minutes or so, she said.

Cindy feels Nick is continuing to be isolated in his group home

Cindy said Nick’s phone was recently taken away from him, and that he has had few social interactions since March. Before that, his church was his main source of social interaction.

Currently, Cindy’s contact with her son is restricted by the group home to once a week. Her phone contact with him is also apparently highly restricted. She was told in March that no in-house visits were permitted because of the COVID crisis, but said no one informed her that in-house visits were restored as of early October under revised DDS guidelines.

In an email on Oct. 8, Cindy complained to Nick’s service coordinator that the group home staff told her not to call Nick, and didn’t give her a reason for that. She said she sometimes goes for three to five days without hearing from him.

Cindy said those restrictions on contact have made it harder for her to keep track of the care Nick is receiving, and to monitor his medical needs. She said that when she called the house earlier this week to ask permission to visit her son, a staff member hung up on her.

Case fits a pattern

Unfortunately, this case fits a pattern we have seen in which DDS and sometimes providers themselves have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

Guardians, parents, and other family members can suddenly find their contact with their loved ones restricted or banned entirely, and their guardianship placed in jeopardy. They are frequently either ignored or threatened with punitive actions if they don’t agree to accept the providers’ decisions on care and services without complaint. (Examples of this are here, here, here, here, here, here, here, here, here, and here.)

Without an attorney, family members and guardians can find themselves badly outmatched and outgunned by DDS’s extensive legal resources, particularly in probate court. The system is entirely unfair and designed to bully families into submission.

It shouldn’t have to be this way. We strongly hope that Cindy prevails in her battle to keep her guardianship, and will do everything we can to help her. But it will likely be an uphill battle.

What you can do

We urge people to call DDS at 617-727-5608 and ask to leave a message with the commissioner in support of Cindy remaining as her son’s co-guardian.

Also, please call your local state legislators (you can find them here), particularly if you live in the Lowell and Dracut areas, and ask them to contact DDS on her behalf. And please share this post on Facebook and other social media.

Administration now reporting human services staff COVID data, but not specifically for DDS

November 9, 2020 Leave a comment

After months of failing to report the COVID-19 status of staff working in provider-run group homes and other facilities funded by the Department of Developmental Services (DDS), the good news is the Baker administration is at least finally starting to take those numbers publicly into account.

Staff-related testing information is now contained in weekly state facilities reports, which are posted online every Wednesday evening.

The bad news is the testing data listed are for all “congregate care sites operated by state-contracted (human services) providers.” The numbers of provider staff testing positive are not broken down among facilities funded by DDS, the Department of Mental Health, the Department of Youth Services, and possibly other agencies falling within an umbrella agency — the Executive Office of Health and Human Services (EOHHS).

The latest weekly state facilities report doesn’t break the data down by individual provider either. And that’s not to mention that there is still no testing even being done on DDS community-based day program staff.

The newly reported numbers of total EOHHS provider-staff who have tested positive in the past month can be found on Page 6 of the latest weekly report.

In addition to the lack of a breakdown of staff testing numbers by EOHHS department, there are other questions about the nature of the data presented in the latest report. It’s not clear, for instance, what is meant in the report by “congregate care” staff, particularly whether that refers only to group homes or includes larger Intermediate Care Facilities (ICFs) such as the DDS-run Hogan Regional Center and Wrentham Developmental Center.

Also, the Page 6 data reflects two-week testing periods while the rest of the report shows current numbers of COVID cases in the latest week.

This lack of specific and clear information in the weekly reports continues to be concerning, particularly since the data that we do have shows what appears to be the start of a second wave of the COVID-19 virus within the DDS system, in addition to the second wave that has hit the state as a whole.

Data show a surge of provider staff cases

The staff data on Page 6 of the latest weekly state facilities report show that the number of staff testing positive for COVID-19 in all EOHHS provider-run group homes started from a baseline of 240 as of September 30. Those positive provider staff rose  by 91 in the first half of October, and by 245 in the second half of October, based on biweekly surveillance testing.

It is important to note that the baseline number of 240 is not a cumulative number of the total number of staff that contracted the virus since the start of the pandemic, but is only the number found to be positive during baseline testing conducted between August 1 and September 30.

The increase of 336 in positive staff cases during the two biweekly surveillance testing periods in October is a jump of 140%; and it would appear to mean that some 400 staff in provider-run group homes were potentially positive as of October 28.

Of course, the document doesn’t show how many of those staff are in DDS group homes, although DDS does have the largest number of group homes of any EOHHS department.

On page 2 of the report, the data show the number of residents testing positive in DDS provider-run group homes jumped from 46 to 65, as of the 7-day period ending November 3. The number of residents testing positive in state-operated group homes rose in that same period by only 1, to a total of 10.

State-operated “congregate care” staff cases

The number of staff, specifically in DDS, DYS, and DMH state-operated “congregate care” sites are also now listed on Page 6 of the latest weekly state facilities report. The number of those staff testing positive started from a baseline of 6 as of September 30, according to the latest report. Positive staff in those facilities rose by 2 in the first half of October, and by 20 in the second half of October.

Pages 1 and 2 of the weekly state facilities report have continued to list 7-day residential and staff data for both the Hogan and Wrentham facilities and state-operated group homes.

Surge in COVID cases could affect visitation

With the numbers showing, or at least implying, an increase in staff and some residents testing positive for COVID in the DDS system, DDS has indicated that it is leaving it up to providers to determine whether to reimpose restrictions on visitation by family members and guardians.

While visitation had been sharply restricted in the first several months of the pandemic, the latest guidance on the DDS website, which was issued in September, continues to allow both in-home and outdoor visitation.

However, as of the end of October, at least one provider was banning in-house visits. We received a notice from a parent of a resident of a group home run by American Training, a DDS provider, that all visits inside the provider’s group homes would be prohibited due to an increase in COVID rates in the Andover area. The parent said she was told visits to the home would still be permitted outdoors.

In response to a query from COFAR, a DDS spokesman said that despite the Department’s guidance, final decisions on visitation are being left to the discretion of the providers.

Unfortunately, we’ve heard about a number of cases in which providers have used the COVID crisis to ban or discourage visitation in order to keep family members and guardians in the dark about conditions in their homes.

Until a vaccine becomes available, it is clear that the COVID crisis will continue to present a major threat to DDS clients and staff, just as the crisis has for the general population throughout the country.

In the meantime, we hope that the Baker administration will take further steps to improve and clarify its public reporting of the testing status of clients and staff in the DDS system, and will provide clearer guidance and direction to both families and providers regarding visitation.

Questions surround supervision of DDS client with violent history

October 26, 2020 7 comments

Anthony Remillard, an intellectually disabled man who fatally assaulted another man at the former Templeton Developmental Center in 2013, has been released from prison to a group home amid lingering questions about his supervision.

Dennis Perry, who was also intellectually disabled, died in the sudden and unprovoked attack in which Remillard shoved him against the side of a boiler in the dairy barn of the former facility.

Nancy Perry Mias, Dennis Perry’s sister, told us in September that she had been notified that Remillard, who was convicted of the crime and served seven years in prison, has been placed in a group home funded by the Department of Developmental Services (DDS).

Nancy said her concern is for the residents at the group home, as Remillard obviously has violent tendencies and probably didn’t get the help he needs while in prison. “I do have sympathy for this man,” she wrote to us in an email, “but I just feel as if the other families at the group home could be blindsided as we were, when we found out his history.”

In response to a Public Records Law request we sent to DDS in September, the Department responded that it does not have specific policies to alert the police, families, the community, or other residents when people with violent or criminal tendencies are placed in group homes.

DDS does provide special staff training, known as Crisis Prevention, Response and Restraint (CPRR), in group homes that house persons with potentially violent behaviors, an official stated. But it is not clear whether the group home to which Remillard has been admitted has implemented the CPRR curriculum, as specified in DDS regulations.

We’ve blogged about this case a number of times, also questioning the lack of supervision of Remillard at Templeton. We’ve also questioned whether it was appropriate to place him in prison where he wasn’t likely to get treatment, but would possibly be exposed to even more violence.

While Templeton was a functioning Intermediate Care Facility (ICF), it housed a number of clients with violent behaviors. But Remillard was a resident there after the facility was targeted for closure and was being phased down. Templeton was closed in 2015.

Although an internal DDS investigation of Perry’s murder cleared the Templeton staff of any omissions of care, we raised questions about the lack of thoroughness of the DDS report and the fact that the Department was essentially investigating itself in the matter.

In September, after learning of Remillard’s release from prison, we filed the public records request to determine what policies DDS has to protect other residents and the community when potentially violent residents are placed in DDS facilities. We asked, among other things, for any policies to alert the police and other residents and guardians and members of the community to the criminal backgrounds of clients in group homes.

DDS stated that it doesn’t have any policies of its own on alerting family members or the police in those cases. The DDS response stated only that the Department “supports” clients in following laws requiring them to register as sex offenders or to report to law enforcement or probation.

The only thing DDS stated that it has specifically done to ensure the safety of clients in these cases is to have developed the CPRR training program for staff of facilities with residents who have violent behaviors. As part of the their response to us, DDS included an “approved CPRR” workbook, dated 2017 and titled, “Proactive Approaches to Behavioral Challenges.”

The focus of the workbook is on “de-escalation and prevention of challenging behaviors.” The document describes a 20-hour training curriculum, and states that staff in group homes with potentially violent residents receive 1-year certifications in the use of “least restrictive techniques” and in the use of restraints as a last resort.

The workbook discusses the importance of providing reassurance and support to residents who exhibit “challenging behavior.” It states that many people who become violent do so out of feelings of powerlessness and vulnerability. The workbook suggests that “helping this person feel stronger and safer is a major means of reducing the probability of aggression.”

The workbook also states that most people exhibit “cues” or warning signs of aggression, and that “knowledge of these and their typical order of occurrence is a key to having a positive outcome to the situation.”

The workbook then lists several handholds and other techniques as “a last resort” to control physically aggressive individuals who endanger themselves, staff, or others. The techniques are presented in a sequence of least restrictive actions to most restrictive.

We assume, or hope, that Remillard has been sent to a group home that provides that training. We have no way, however, of evaluating the quality of the training described.

Ultimately, a single training curriculum is probably not sufficient to ensure the proper supervision of potentially violent individuals in the DDS system, and to keep other residents and the community safe.

This case is yet another reason to question the state’s longstanding policy of closing highly supervised ICF-level facilities such as Templeton, and then privatizing those functions.

But those types of questions have not been raised in recent years by the Legislature or successive administrations about either this case or any number of other abuse and neglect cases that afflict the DDS system with tragic regularity. The Legislature’s Children, Families, and Persons with Disabilities Committee has blown opportunity after opportunity to examine these systemic problems.

The Committee is a symbol of legislative failure in this regard, but it is hardly alone in that. The state Attorney General’s Office has similarly failed to take action to protect persons with developmental disabilities.

Nancy Perry Mias and other members of her family initially sought help from members of the state’s congressional delegation in obtaining an independent investigation of the DDS system in the immediate aftermath of Dennis Perry’s killing. They met with the staff of U.S. Senator Elizabeth Warren and with Representative Jim McGovern himself.

They all promised to look into the matter, Nancy said, “but we never heard a word back from them.” She said McGovern even said at the time that, “You certainly deserve an apology.” But, she said, the family never got one.

Baker’s revised budget for the current year would cut funding for day programs, increase funding for implementing ‘Nicky’s Law’

October 20, 2020 4 comments

Governor Charlie Baker last week proposed a revised state budget for the current fiscal year in light of the COVID crisis that would boost funding for some programs for persons with developmental disabilities, but would sharply cut day program funding.

The community-based day program cut reflects the impact of the COVID pandemic on in-person programs, according to a statement from the Department of Developmental Services (DDS). The resulting changeover to virtual programs on platforms such as Zoom has not been welcomed by some families and guardians who say the quality of in-person programs cannot be replicated on virtual platforms.

Baker’s $45.5 billion state budget does contain a proposed increase of $780,000 over his original plan in January in order to fund the implementation of “Nicky’s Law.” The new law would create a registry of names of caregivers in the DDS system who have had abuse cases substantiated against them.

It isn’t clear, however, that Baker’s budget plans will be approved by the Legislature. The governor’s revised budget proposes increases in overall state spending beyond what he proposed in January despite the projected loss of $3.6 billion in state tax revenues due to the pandemic.

Overall, the impact of the governor’s revised budget on programs and services funded by DDS appears mixed. Also, while Baker’s budget would boost Medicaid funding by  $834 million, it isn’t clear how that would affect DDS programs.

Day program funding would be cut

As noted, the news isn’t good in Baker’s revised budget for the provider-based line item for community-based day programs (5920-2015). The budget proposes a cut of $22.4 million, or 9.2%, in that line item when adjusted for inflation.

Baker had originally proposed a 6% increase in the day program line item in January.

DDS Ombudsman Chris Klaskin issued a statement from the Department that appears to indicate that a significant number of DDS clients aren’t attending day programs in light of the pandemic:

The proposed funding level incorporates revisions to (day) program forecasts as a result of DDS provider agency closures, reduced demand for services, and capacity requirements to maintain physical distancing in transportation and congregate settings advised by the Centers for Disease Control and Prevention (CDC).

Over the course of COVID-19 pandemic, DDS and its agency providers have worked in partnership to accelerate and incentivize alternative day programming in virtual and remote settings (i.e. Zoom classes) to supplement in-person services in the interim.

Some families have indicated to us that Zoom-based activities don’t work well with their loved ones who are DDS clients. At the same time, those families do not want to expose their loved ones to possible COVID infection in in-person programs.

We have noted that while staff working in residential DDS programs are now required to be tested for COVID-19, there still is apparently no such requirement for staff in day programs.

I sent a follow-up request to Klaskin today for information on the number of day program agencies that have closed, and the amount of the drop-off in demand for the programs.

Transportation funding would be boosted

In addition to the increased funding for the implementation of Nicky’s Law, Baker’s revised budget proposes a $3.5 million, or 11.7%, increase in the DDS transportation line item (5911-2000). It’s not clear why that provider-based line item would be increased by such a large percentage at the same time that the day program line item is being cut.

Mixed news for provider-run group homes

It appears the largest DDS line item — provider-operated group homes (5920-2000) — would get a very modest increase from Fiscal 2020 under the governor’s proposal. It’s actually a small cut of 0.33% when adjusted for inflation.

However, despite that apparent slow-down in funding this year, the provider-run group home line item will have been boosted since Fiscal 2012 by almost $423 million, or 49%, to $1.28 billion, if Baker’s proposal is adopted.

We have frequently noted that overall, the Legislature and successive administrations have steadily increased funding for privatized DDS-funded functions while either cutting or providing minimal increases in funding for state-run services.

Also, the governor proposed what appears to be a big increase in the Chapter 257 Reserve Fund (1599-6903), which goes to the residential providers in the form of rate increases. Baker would increase that line item by $119 million to $160 million. It isn’t clear, though, that the entire increase would take effect in the current fiscal year, which would be half over by the time the governor’s budget were to go into effect.

State-run developmental center funding cut as usual

Funding for the two remaining state-run developmental centers (5930-1000) would be cut as usual. Baker’s revised budget would cut the line item by $1.7 million, or 1.6%, when adjusted for inflation. That line item will have been cut  by more than $70 million since Fiscal 2012. Since then, four of six remaining centers have been closed.

Under Baker’s revised budget, the relatively small state-operated group home line item (5920-2010) would get a modest increase of $3.86 million this year, or 1.7%, when adjusted for inflation.

Also, the DDS administration line item (5911-1003) would get a proportionally larger increase of $4.5 million, or 6%. At least some of that funding is for DDS service coordinators, who manage and oversee services to thousands of DDS clients.

Funding increased to implement Nicky’s Law

One piece of potential good news is that the governor’s revised budget would boost funding to the Disabled Persons Protection Commission (DPPC) by $909,600, or 18.6%. That is $781,000 more than the 2.6% increase that Baker proposed in January for the DPPC.

As noted, the additional funding is intended to implement Nicky’s Law. That funding would enable the administration to avoid a lengthy delay in implementing the long-sought legislative initiative to prevent abusive caretakers from continuing to work in the system.

A member of the staff of state Representative Kay Khan, House Chair of the Legislature’s Children, Families, and Persons with Disabilities Committee, said the additional $910,000 for the DPPC is a pro-rated amount. It is based on the DPPC’s original Fiscal 2021 request for $1.2 million to establish the registry.

Andrew Levrault, DPPC assistant general counsel, said the agency anticipates hiring additional investigatory and legal staff, in part, to defend the agency in legal appeals of the placement of individuals on the registry. He said more than 700 provider agencies are expected to access the registry each year to conduct checks on thousands of prospective employees.  In addition to the investigative and legal staff, the DPPC “needs to substantially expand its information technology infrastructure” to meet the registry access needs of the providers.

As usual, the budget process raises many concerns about the near-term and long-term future of care for those in the DDS system; and answers are often hard to come by. The COVID crisis is vastly complicating an already complicated process.

Confirming our concerns, the Globe reports the administration is withholding COVID testing info

October 13, 2020 3 comments

The Boston Globe has recently been reporting that the Baker administration is withholding COVID-19 testing information from the public regarding nursing homes and other congregate care facilities.

Unfortunately, the Globe has repeatedly failed to mention that these “other congregate care facilities” include group homes and developmental centers in the Department of Developmental Services (DDS) system.

But a Globe editorial on Monday, (October 12) confirms our own reporting about the lack of public information from the Baker administration about COVID testing.

As the editorial stated:

…it’s worrisome that the Baker administration has provided only partial access to important COVID infection data in nursing homes and other long-term care facilities, even after the governor signed a law to enhance data reporting.

We have been posting for months about this issue as it relates to the DDS system. Our latest post on October 7 discloses that the administration’s online Weekly State Facility reports do not contain any COVID testing data on what may be more than 25,000 staff working in provider-operated group homes.

Further, as we reported, there is no information listed in the weekly reports on the numbers of deaths of staff working in any type of DDS setting. Data provided by DDS in June showed that anywhere from 3 to 15 staff members in group homes had died of COVID-19 as of the end of that month.

In addition to the missing staff data in the weekly reports, the positive test numbers for residents of DDS facilities are not cumulative, and there are no exact numbers given when there are less than 5 deaths or positive cases in any category in a given week.

Globe finds similar lack of data

With regard to nursing homes, the Globe has found many of the same information problems that we have disclosed with regard to DDS. The Globe reported last month that the administration is providing ranges of numbers rather than exact numbers on nursing home residents testing positive; and the newspaper said there is no cumulative testing data in the administration’s reporting on certain assisted living facilities.

MassLive reported on October 1 that no data is published by the administration, as required by a new public reporting law, on whether people who tested positive for COVID-19 have a disability.

Administration strategy to withhold COVID information

Given our findings and the reporting by the Globe and MassLive, it appears withholding COVID-related information is a deliberate strategy by the administration.

In early August, we reported that internal emails in June among the Baker administration’s top human services administrators revealed an apparent consensus to reduce public reporting of COVID-19 test results in congregate care facilities.

That consensus appears to have led to decisions to stop publicly reporting cumulative COVID testing data, and not to report test data on DDS provider staff working in group homes. For reasons that are unclear to us, the administration publicly reports only the number of staff testing positive in state-run group homes.

In one email, a senior manager at MassHealth appears to have wanted to “sunset” congregate care reporting in general. That was apparently just as Governor Baker was signing legislation into law that would increase reporting requirements about COVID-19 infection rates in congregate care facilities.

Lack of compliance with Public Records Law

It’s not clear whether the Globe or any other state media outlet followed up on our reporting on those internal emails.

However, the Globe did file its own public records requests in June for internal emails on COVID testing; and, like us, they’ve gotten little information. The Monday editorial stated that the Executive Office of Health and Human Services (EOHHS) was not complying with orders from the Public Records Supervisor to release the records to the Globe.

We have also reported that the administration has not complied with orders by the Public Records Supervisor to provide us with records or responses to numerous public records requests regarding COVID testing in the DDS system.

Meanwhile, our repeated requests over the past six months to Health and Human Services Secretary Mary Lou Sudders for information about the administration’s response to the virus have all been ignored.

Globe calls for accountability, but the newspaper itself has a blind spot

In its editorial, the Globe gave Governor Baker credit for bringing the pandemic “more or less under control in the state.” But the newspaper maintained that, “we can’t afford any more blind spots. The public needs to keep a close eye on the trends — and hold the state accountable when required.”

We agree that the administration’s lack of adequate public reporting on the COVID crisis shows it is failing to hold itself accountable for its response to the crisis. We hope that changes.

Yet the Globe and the rest of the media in Massachusetts have their own blind spot in that they appear to be largely uninterested in issues facing people with intellectual and developmental disabilities in the state.

We hope that the administration finally ends its circle-the-wagons approach when it comes to providing information and relevant data about the COVID crisis.

At the same time, we hope both the administration and the media will stop treating people in the DDS system as an afterthought at best, particularly with regard to the pandemic.

No Data: DDS group home staff data largely absent from administration’s public COVID test reports

October 7, 2020 5 comments

Even though the Baker administration announced in August that they were requiring staff to be tested for COVID-19 in group homes for persons with developmental disabilities, it appears only a small portion of the results of those tests on staff are being made publicly available.

The administration’s Weekly State Facility Reports list numbers of state-operated group home and developmental center residents and staff who are currently COVID positive. But they do not contain any COVID testing data on what may be more than 25,000 staff working in the much larger network of provider-operated group homes.

Further, there is no information listed in the weekly reports on the numbers of deaths of staff working in any type of DDS setting. Data provided by DDS in June showed that anywhere from 3 to 15 staff members in group homes had died of COVID-19 as of the end of that month.

We created the chart below based on the administration’s online Weekly State Facility Reports from May 26 through the most recent report, dated September 29. (You can click on the chart to make it larger.)

The chart illustrates the data gaps, and points to some other problems with the way the administration reports the results of COVID testing in the Department of Developmental Services (DDS) system. In addition to the missing staff data, the positive test numbers are not cumulative, and there are no exact numbers given when there are less than 5 deaths or positive cases in any category in a given week.

We also have questions about the data on “residents recovered” from COVID. A note to the data states that the numbers “do not include all facility cases and recoveries over time.” As a result, it isn’t clear what portion of all recovered residents are included in the data.

As discussed below, the number listed in the weekly reports for residents having recovered from the virus in state-operated group homes — 146 — did not change from July 21 through September 29.

There is no similar data listed in the reports on recovered staff.

There are some 4,800 staff caring for some 1,400 residents in state-operated group homes and developmental centers run directly by DDS, according to the administration.

DDS has no figures on the total number of staff caring for the 7,800 residents in provider-run group homes around the state; but we are estimating that the number of such staff may be higher than 25,000.

EOHHS reports provide more limited data even for residents

The chart illustrates the gaps in staff data by including categories labeled “no data.”

Even with regard to residents, the Weekly State Facility Reports provide exact numbers only if more than 5 residents are positive or have died in a given week. As the chart shows, there are a number of entries that say <5, meaning the true numbers are anywhere from 1 to 4.

As a result, it can’t be determined in those instances exactly how many individuals were positive with COVID or died in a given week, in given settings.

For instance, it can’t be determined for the week of September 29 how many group home residents actually died of the virus. The data state only that the number was <5. It’s not clear why the numbers aren’t more exact. Among other problems, listing the data as a number range precludes adding numbers from different weeks together to obtain cumulative totals.

Data reporting changeover as of October 1

From April through September 30, DDS did provide us, upon written request, with total numbers of residents and staff testing positive in all group homes and developmental centers. DDS also provided exact numbers and provided cumulative testing data.

DDS has now referred us for testing numbers going forward to the Executive Office of Health and Human Services (EOHHS), which posts the Weekly State Facility Reports.

Since June 16, the Weekly State Facility Report numbers are for the current week only. Prior to that date, the reports did offer cumulative testing numbers, which are listed in red font in the chart above.

The changeover in data reporting from DDS to EOHHS coincides with a new testing system under which DDS and other human services providers must arrange for their own COVID testing.

I emailed Health and Human Services Secretary Mary Lou Sudders on Monday to ask whether EOHHS can provide us with more complete data, similar to the data that DDS provided.  I also emailed Helen Rush-Lloyd, records access officer for the Department of Public Health (DPH). I was told DPH actually produces the Weekly State Facility Reports.

Neither Sudders or Rush-Lloyd has responded to my emails.

No longer listing cumulative data for positive tests

As noted, the Weekly State Facility Report data on positive test results are no longer cumulative. The reports list the number of group home and developmental center residents who are currently positive each week.

While previous weekly reports are available online, it isn’t clear if cumulative positive testing totals can be gleaned from them. As noted below, it also isn’t clear whether the numbers of recovered residents are actually cumulative.

The week of June 16 may have  been the last Weekly State Facility Report listing clearly cumulative data. As of June 16, the report listed a cumulative total of 1,428 state and provider-operated group home residents as having tested positive.

That number, however, does not line up with our data from DDS. DDS at that time reported a cumulative total of 1,575 group home residents as having tested positive.

COVID recovery numbers didn’t change for state-operated group home residents

As noted above, it isn’t clear what the numbers listed in the Weekly State Facility Reports for recovered residents actually means, or whether the numbers are cumulative. The reports list the category as “Current Clients Recovered.”

A note at the bottom of each report states that the numbers listed for recovered residents “do not include all facility cases and recoveries over time.”

Recovered patients are further defined as having tested negative or having met symptom and time-based recovery guidelines issued by the Massachusetts DPH and federal Centers for Disease Control.

As the chart above shows, the number of state-operated group home residents listed as recovered remained at 146 from July 21 through the end of September. Prior to July, a cumulative total of 156 residents of those facilities were listed as having contracted COVID-19.

From June 15 on, as many as 24 additional state-operated group home residents, or as few as 6, contracted the virus, according to the data. It isn’t clear whether the 146 listed each week as having recovered represents the same group of residents, and whether no additional residents recovered from the virus after July 21.

We have similar questions about the number of residents listed as recovered in provider-operated group homes. While 1,187 residents of those facilities were listed as recovered in the June 23 Weekly State Facility Report, that number rose by only 52 — to 1,239 — as of September 29.

It isn’t clear to us whether only 52 additional residents recovered from the virus in the provider-run group homes in the three-month period after June 23. It is also unclear what the cumulative total was of those residents testing positive was during that same period of time.

We hope that EOHHS improves its public reporting of COVID testing results in the DDS system by eliminating the gaps in the data, making all the numbers exact, and providing cumulative data in addition to current data.

In not providing clear and complete reporting on the COVID crisis in the system, and in failing to respond to questions about the reporting, the administration loses a bit more of its credibility every day in that respect.

Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled

September 30, 2020 6 comments

As the nation celebrates the life and judicial legacy of the late U.S. Supreme Court Justice Ruth Bader Ginsburg, we would like to recognize and set the record straight about her major contribution in one particularly vital case to the rights of persons with cognitive disabilities.

Ginsburg wrote the majority opinion in Olmstead v. L.C., which has been characterized as the most important civil rights decision for people with disabilities in our country’s history. It may have certainly been that, but not, as is usually claimed, because it held that “unjustified isolation (in institutions) is properly regarded as discrimination based on disability.”

That statement is only half the holding of Olmstead. There was another major element of Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t.

As our national affiliate, the VOR, has pointed out, Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

In other words, the greatness of Ginsburg’s contribution to the rights of the disabled was that her decision was all about choice. It provides a choice between community-based care and institutional care to persons with cognitive disabilities.

In announcing the Olmstead decision on June 22, 1999, Ginsburg stated that that the answer was “a qualified yes” to the question whether the Americans with Disabilities Act (ADA) “…may sometimes require a state to place persons with mental disabilities in community settings rather than in state institutions.”

The key word here was “qualified.” Ginsburg’s majority opinion held:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

The majority decision included a reference to amicus brief submitted by VOR, which stated that:

Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.

Decision has been misinterpreted

Despite those clear statements, Olmstead has continuously been misinterpreted by policy makers, administrators, and even governmental agencies as requiring the closure of all remaining state-run congregate care facilities in the country and privatizing all remaining residential care. What these advocates have done is to take the choice out of it.

The U.S. Department of Justice’s Civil Rights Division, for instance, has mistitled its technical assistance website, “Olmstead: Community Integration for Everyone.” (my emphasis). That is simply not true. Olmstead clearly implied that community integration isn’t for everyone.

In line with this misinterpretation, the DoJ has for years filed lawsuits around the country to close state-run care facilities, whether the residents and their families and guardians have opposed those closures or not. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by VOR.

While the DoJ has not filed such a suit against the State of Massachusetts, that may be because the state closed four out of six developmental centers that were in operation in the state as of 2014.  Olmstead, however, has been used as a justification in Massachusetts and other states for closing sheltered workshops, as Massachusetts did as of 2016 over the objections of many of the participants and their families.

Those acts and outcomes are not consistent with the plain language of Olmstead regarding the importance of the individual’s personal choice. Nevertheless, facility closure advocates consistently cite Olmstead as justifying their actions.

Community-based care was appropriate for original plaintiffs

The Olmstead lawsuit was brought on behalf of Lois Curtis and Elaine Wilson of Georgia, who both had diagnoses of mental health conditions and intellectual disabilities, according to a website created by attorneys with the Atlanta Legal Aid Society, who represented the women in the case.

Curtis and Wilson had asked the state of Georgia to help them get treatment in the community so that they would not have to live in a mental hospital.  According to the Atlanta attorneys, the doctors who treated Curtis and Wilson agreed that they were capable of living in the community with appropriate supports. However, both women had been waiting for years for their community-based supports to be established.

Thus, the original plaintiffs in the Olmstead case satisfied at least two of the three conditions that Ginsburg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsburg recognized that might not be true of everyone in institutional care.

Olmstead wrongly used to justify continuing privatization of DDS services

The Olmstead decision is based on regulations in the ADA that stipulate that public entities should provide services and programs in “the most integrated setting appropriate to the needs” of persons with disabilities.

In Massachusetts, administrations have long contended that the most integrated settings exist in the form of community-based group homes, the majority of which are run by corporate providers that receive state funding.

The problem with this view is that there have been countless examples of group homes that offer residents little opportunity for community integration. Yet the argument that group homes are more integrated than developmental centers is ingrained among policy makers, journalists, and others. This has made it accepted wisdom that all state-run congregate care facilities should be closed — an outcome that will ultimately lead to complete privatization of care.

That appears to be the goal of federal agencies such as the Centers for Medicare and Medicaid Services (CMS), which has issued regulations and provided billions of dollars in grants intended to boost the privatized group home system around the country.

On September 23, for instance, CMS announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. As a CMS press release put it, this funding “will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing.”

But while this outcome is termed a choice, the closure of the institutions will actually eliminate the choice that Ginsburg articulated in Olmstead. The VOR amicus brief, as noted, stated that on a case-by-case basis, the most integrated setting may be an institution.

The Disability Integration Act of 2019 would further erode Olmstead choice

Unfortunately, the notion that community-based care is the only appropriate option for people with cognitive disabilities is so ingrained and pervasive that the entire Massachusetts congressional delegation signed onto a bill last year, which would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

The bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would potentially threaten the Wrentham Developmental and Hogan Regional centers in Massachusetts, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

The legislation calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). As such, the bill does not comply with the choice provision in Olmstead.

We have contacted the members of the members of the state’s congressional delegation to urge them to support a change in the language of the bill to respect the choice of individuals, families, and guardians either to get into or to remain in congregate care facilities.

Given that the two versions noted above of this bill are still pending in House and Senate committees in Congress, we plan to remind the members of the Massachusetts delegation of the legacy and words of Ruth Bader Ginsburg.

In 1999, Justice Ginsburg endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity. Now at the time of her passing, we think it is important to remember and reflect on that.

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