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ACLU and SEIU surprisingly and confusingly gang up on congregate care for the developmentally disabled during COVID crisis

July 13, 2020 3 comments

The American Civil Liberties Union (ACLU) and the Service Employees International Union (SEIU) are usually strong advocates of accountability and transparency in government.

That’s why it is surprising that both of those organizations appear to be using the coronavirus pandemic to further a longstanding agenda, which we never knew they shared, to privatize services to people with intellectual and developmental disabilities.

It’s particularly surprising that the SEIU, a human services employee union that represents caregivers in the state’s two remaining developmental centers, would be on board with closing down state-run care facilities.

In a petition filed June 23 with the U.S. Department of Health and Human Services (HHS), the ACLU, SEIU, and a number of other advocacy organizations appear to start off on the right track in criticizing the federal government for its mismanaged response to the pandemic.

The petition identifies nursing homes, Intermediate Care Facilities for the developmentally disabled (ICFs), and group homes as sites of large numbers of COVID-19 infections and deaths that could have been prevented with better guidance for infection control, more testing, and better patient and worker protections.

But the petition then goes on to make a number of, at times, poorly conceived and even confusing claims and recommendations that ultimately appear intended to support a privatized care agenda.

At least some of the confusion centers around group homes, which the petition lumps together with ICFs as sources of “congregate care.”

The petition suggests that among the causes of the infections and deaths is the federal government’s failure “to divert people from entering nursing homes or other congregate settings” or to increase discharges from those settings “to the community.”

The argument the petition makes is that reducing the population in all of those facilities would “make social distancing possible.”

The petition defines congregate settings as including ICFs, psychiatric facilities, and group homes. Yet, group homes are considered part of the community-based system of care in Massachusetts and other states.  As a result, it isn’t clear what the ACLU and SEIU mean in stating that people living in group homes would be among those in congregate settings who should move “to the community.”

The petition, moreover, calls for reducing the population of nursing homes and congregate settings by 50 percent. Should HHS neglect to act within three weeks to enact that and other suggested measures, the groups will sue, the petition states.

It is unclear whether the ACLU and SEIU mean that nursing homes, ICFs, and group homes should all be emptied of 50 percent of their residents, or where those residents would then go.

VOR, COFAR’s national affiliate, issued a statement sharply critical of the petition, maintaining that:

…the ACLU has cast its net too wide, and falsely claimed to represent the interests of everyone receiving federally funded services who is classified as elderly or who has intellectual and developmental disabilities. In doing so, it apparently assumes that all such persons look and feel alike and need the same supports and level of care.

Further confusion over the HCBS waiver

Adding to the confusion over group homes is language in the ACLU/SEIU petition calling on HHS to “provide incentives to states to redesign their Medicaid programs to expand Home and Community Based Services (HCBS) and other community-based services and supports” with the goal of the 50 percent reduction in the population in congregate settings.

Once again, that language is confusing in that group homes in Massachusetts and other states have long been recipients of federal funding under an HCBS waiver of Medicaid regulations governing ICFs. In asking for an expansion of Medicaid funding under the HCBS waiver, is the petition suggesting that the money go toward care in a setting other than group homes?

ACLU/SEIU petition misreads the Olmstead Supreme Court decision

The ACLU/SEIU petition further misreads the landmark Olmstead v. L.C. U.S. Supreme Court decision, which paved the way for expansion of privatized care. Although the 1999 decision held that community-based care should be made available for those who desire it, it nevertheless recognized the role played by institutional care for those who can’t function under community-based care.

The Olmstead ruling stated that the Americans with Disabilities Act (ADA) “does not condone or require removing individuals from institutional settings when they are unable to benefit from, or do not desire, a community-based setting.”

We have asked the SEIU’s Massachusetts affiliate, Local 509, whether it is in support of the ACLU/SEIU petition. We have not heard back yet, but we hope they are in a position to disavow it.

There is a lot to be concerned about regarding the efforts of both the federal government and the state government here in Massachusetts to protect persons with intellectual and developmental disabilities from the virus. We’ve raised a lot of those concerns over the past few months.

At the same time, and for that reason, we don’t think it is appropriate for any organization to use the pandemic to support an anti-institutional agenda.

Administration withholding information on COVID-19 conditions in DDS system

April 17, 2020 10 comments

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

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

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

Among the anecdotal information we’re getting:

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

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

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

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

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

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

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

Staff not tested at Wrentham Center

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

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

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

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

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

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

Crisis highlights problem with privatized care

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

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

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

Group home model presents logistical problems

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

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

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

A single testing site for group homes might make more sense

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

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

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

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

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

Resident of group home was sickened by an inappropriate anti-psychotic medication as prescription was increased by 500%

March 2, 2020 5 comments

A group home administered an inappropriate and unnecessary anti-psychotic drug to an intellectually disabled woman and increased the dosage by 500 percent last year, according to the woman’s sister.

The 57-year-old woman, who we are referring to as C.J. for privacy reasons, developed tardive dyskinesia after being administered the anti-psychotic drug, Latuda, for nine months, according to her sister, Ellen O’Keefe, who is also an advocate for her.

The staff of the Canton-based group home also left the woman alone on two occasions last June and in January of this year in apparent violation of regulations of the Department of Developmental Services (DDS). The group home is operated by Delta Projects, Inc., a corporate provider to DDS.

In one instance, C.J. was admitted to a hospital for treatment of pneumonia after she was left alone by the staff in the residence, O’Keefe said. She was later admitted to the same hospital for treatment of symptoms of the tardive dyskinesia, her sister said.

Tardive dyskinesia is a serious disorder that caused further cognitive impairment in C.J. and involuntary, repetitive body movements, O’Keefe said. She said her sister has also begun to need a walker. O’Keefe, at COFAR’s suggestion, reported the use of the medication on C.J. to the Disabled Persons Protection Commission (DPPC).

O’Keefe said C.J., who has moderate intellectual disability, can’t read, but has very good communication skills.

Last week, O’Keefe and her family moved C.J. to a new group home run by a different provider, South Shore Support Services. O’Keefe said she was not offered an option by DDS of placing C.J. either in a state-run group home or a residence closer to her family; but the family accepted the placement DDS offered because they wanted C.J. removed from Delta Projects’ care as soon as possible.

C.J. had lived for about four years in the Delta Projects group home. The increasing dosages of Latuda were prescribed by Carine Luxama, a nurse practitioner with Nova Psychiatric Services in Quincy, a subcontractor to Delta Projects.

Ellen and Carole photo2.jpg

Ellen O’Keefe (left) and C.J.  C.J.’s apparently inappropriate placement on an anti-psychotic medication in her group home last year apparently resulted in tardive dyskinesia, a serious side effect.

According to records in the case, Luxama first prescribed a dosage for C.J. of 20 mg per day of Latuda in March 2019, and then periodically upped that dosage to 120 mg by November.  In December, at O’Keefe’s insistence and that of another of C.J.’s sisters (who has asked to be referred to by her first name, Nancy), Luxama agreed to discontinue the medication.

Luxama, who I reached last Wednesday (February 26), declined comment on her role in prescribing the Latuda medication for C.J., saying she is prevented from discussing the matter due to patient confidentiality.

According to Wikipedia, Latuda is used to treat schizophrenia and bipolar disorder — mental impairments that can produce delusions, hallucinations, and extreme mood swings. In addition to tardive dyskinesia, serious side effects of Latuda may include neuroleptic malignant syndrome, a potentially life-threatening reaction; an increased risk of suicide, and high blood sugar levels.

Newsweek magazine reported in 2015 on a study in the British Medical Journal showing that anti-psychotic medications were being “grossly over-prescribed” to people with intellectual disabilities. In the study of 9,135 people, 71 percent “did not have the kind of serious mental illnesses the drugs were designed to treat.”

“All along, we had no idea that Latuda was in fact an anti-psychotic medication,” O’Keefe said. “We believed it was in the same class of anti-depressant medications she had always been prescribed by her previous psychiatrists.” 

In 2015, O’Keefe signed a health care proxy statement on C.J.’s behalf, which gave her the authority to make all health care decisions for C.J. and “to give consent to any medical procedures, including treatment with anti-psychotic medication.” However, O’Keefe said that she never gave informed consent to the Latuda that C.J. was placed on, or to its increased dosages.

I have received no response to emails I sent seeking comment on the case to several Delta Projects staff on February 20 and February 25, including to John Pallies, Delta Projects president and CEO.

Family disputes diagnosis of delusions

In her “psych medication” case notes, Luxama wrote on November 1 — some seven months after first prescribing the Latuda — that C.J. was experiencing hallucinations and delusions, and was “having conversations with people no one sees.”

However, O’Keefe strongly disputed that C.J. has ever been delusional, and said she had never previously been diagnosed as psychotic. She said C.J. frequently engages in “self talk,” a coping mechanism for many people with intellectual disabilities. Her self-talk, O’Keefe said, has sometimes been misinterpreted by group home staff as delusional behavior.

O’Keefe said C.J.’s mood swings have largely been the result of her unhappiness with the lack of work activities offered in her day program in recent years. (COFAR has reported that many former participants of DDS sheltered workshops have continued to experience a lack of work opportunities after the workshops were shut down by the state as of 2016.)

In 2014, C.J.’s then long-standing primary care doctor at Brigham & Women’s Hospital described her as suffering from “generalized anxiety disorder” and panic attacks resulting from “being far from her family, worrying about her mother’s health, and not having access to a peer group with whom she can interact and be active.” Anxiety disorder and panic attacks do not necessarily involve delusions or other forms of psychosis.

In her case notes prior to November 1, Luxama did not mention any psychotic or delusional behavior on C.J.’s part. In her notes dated March 25, when she first prescribed Latuda, Luxama wrote only that she was prescribing it for “mood swings.”

While anti-psychotic medications are sometimes used to treat non-psychotic anxiety disorder, at least one psychiatric study warned that:

…the side effect burden of some atypical anti-psychotics probably outweighs their benefits for most patients with anxiety disorders. The evidence to date does not warrant the use of atypical anti-psychotics as first-line monotherapy or as first- or second-line adjunctive therapy in the treatment of anxiety disorders.

Latuda falls into the class of what are known as “atypical” or “second-generation” anti-psychotics. The study added that:

…some patients with highly refractory anxiety disorders may benefit from the judicious and carefully monitored use of adjunctive atypical anti-psychotics. A careful risk-benefit assessment must be undertaken by the physician, on a case-by-case basis, with appropriate informed consent.

However, O’Keefe said she and Nancy, who is also an advocate for C.J., didn’t know that Latuda was an anti-psychotic medication until O’Keefe received a notice in December from Medicare stating that C.J. had been approved in November for another drug, Ingrezza. That sparked her curiosity, she said, and she looked up Ingrezza and found out it is used to treat tardive dyskinesia. Tardive dyskinesia is known to be caused by anti-psychotic medications.

O’Keefe said Luxama also did not disclose that C.J. was being treated with Ingrezza for tardive dyskinesia, and the group home staff did not respond when O’Keefe asked about the Ingrezza on three occasions in early December.

O’Keefe believes the continually increasing dosages of Latuda caused the tardive dyskinesia disorder, which was exacerbated by a final 50 percent increase in the dosage from 80 mg to 120 mg in mid-November. She said that last increase was not disclosed to her family by the group home until almost a month after the fact.

Left alone twice

During the period in which C.J. was losing cognitive functioning, she was left alone twice by the staff in her group home. In the first of those instances in June, she had pneumonia and was admitted to a hospital for treatment after a visiting nurse not associated with Delta Projects found her seriously ill on a couch in the residence.

C.J. was left alone in the residence for a second time in late January.

DDS Commissioner says leaving C.J. alone was “not acceptable”

O’Keefe reported the first incident in which C.J. was left alone in the group home to DPPC, and reported the second incident directly to DDS Commissioner Jane Ryder. O’Keefe cc’d COFAR in her January 31 email.

In a February 7 email in response to O’Keefe and to COFAR, Ryder maintained that “leaving an individual home alone is absolutely not acceptable and DDS has taken immediate and appropriate action.” 

Ryder said staff at Delta Projects “have been terminated as a result…and DDS has increased oversight and monitoring of the Delta residences.”  She added that DPPC was contacted “and a thorough investigation of the matter will be conducted.”

Ryder did not respond to an email I sent to her on February 20, asking for comment about the medication issue.

C.J. photo1

C.J. on a family outing.

Inappropriate placement on anti-psychotic medication

O’Keefe told COFAR she was surprised to find out in December that C.J. had been placed on an anti-psychotic medication because C.J. is not psychotic and was not diagnosed as such by two other psychiatrists who have cared for her in the past. She said she was never prescribed that class of medication before.

On December 7, 10, and 20, O’Keefe sent three separate emails to Kelley Hegarty, director of residential supports at Delta Projects, asking why C.J. was prescribed a medication that was causing her to have symptoms of tardive dyskinesia. She said Hegarty didn’t respond to any of her emails.

On December 20, after first learning at C.J.’s annual physical that Luxama had raised her prescribed dosage of Latuda to 120 mg from 80 mg, Nancy emailed Luxama, saying that at that physical, she noticed that C.J.’s “whole demeanor, body language, and ability to communicate were greatly impaired.”

“Who ordered this drastic change (in medication), when, and why?” Nancy asked in the email. According to Nancy, C.J. was exhibiting “multiple, troubling side effects” such as rigidity, hand shaking, psychomotor impairment, loss of balance, stiffness of arms and legs, dark colored urine, and flat affect in her face.”

Nancy asked that all of C.J.’s medications be reviewed and that “serious consideration be given to lowering the dosage of Latuda with a goal of slowly tapering her off this medication and eliminating the known side effects that this drug causes.”

Some two weeks after Ellen began inquiring about the Latuda and its apparent side effects, Nancy finally received a response on December 20 from Hegarty of Delta Projects. Luxama was out of the office that week, but Hegarty said she had been able to reach her and that Luxama had “agreed” to decrease C.J.’s dosage of Latuda from 120 mg to 60 mg per day. 

On December 27, Tori Petti, Delta Projects residential manager, provided O’Keefe with a timeline of C.J.’s Latuda dosages. O’Keefe said she and Nancy had insisted on the timeline after discovering that the dosage had been increased from 80 mg to 120 mg without their knowledge.

O’Keefe said the last increase in the dosage of Latuda resulted in a two-week stay for C.J. in January at Milton Hospital where she needed physical and occupational therapy related to her tardive dyskinesia symptoms.

According to Petti’s timeline, Luxama first prescribed a dosage of 20 mg per day of Latuda starting on March 25, and raised that dosage on May 6 to 60 mg because C.J. was “appearing ‘more disorganized and paranoid.”

Then on November 1, Luxama increased the prescribed dosage of Latuda to 80 mg and then to 120 mg on November 14, “due to increased anxiety, mood swings, irritability, paranoia, delusions, and aggressive panic attacks,” according to Petti’s timeline.

O’Keefe, however, later challenged those assessments of C.J.’s behavior, stating in a January 14 email to Luxama that “no reasonable examples of this behavior were cited in your notes.”

The real problem, O’Keefe maintains, was that C.J. was experiencing negative side effects of increasing dosages of an inappropriate medication. “The Latuda was causing an alarming decrease in her cognitive awareness and physical endurance,” O’Keefe said. “She became more docile and passive so Delta staff could handle her more easily and suppress her independence.”

O’Keefe said that on December 27 and January 3, she sent emails to Luxama, seeking her rationale for the final increase in the Latuda dosage to 120 mg. She said she got no response until January 7, when Luxama emailed her and seemed to place responsibility on the Delta Projects staff for not having informed O’Keefe and Nancy of the November dosage increase.

“Being new to (C.J.)’s care team, it was my understanding that (Delta) staff would be communicating the outcome of appointments with all involved parties, and that I would be available to answer any questions or concerns anyone might have,” Luxama stated in the January 7 email.

But while Luxama said she would be available to answer questions and concerns, O’Keefe said Luxama didn’t respond to her follow-up email with further questions on January 14.

In that January 14 email to Luxama, O’Keefe said she and Nancy believed Luxama was relying on assessments of C.J’s mental state by non-clinical staff in her group home and day program. O’Keefe said that C.J. was “very unhappy” because her day program had “practically stopped offering her enclave work (and) there is nothing ‘meaningful’ for her to do.” C.J.’s mood, Ellen told COFAR, “was largely the result of her environment, not because she had mental illness.” 

Referring to Luxama’s alleged reliance on the group home and day program staff assessments in prescribing the Latuda, O’Keefe’s January 14 email added:

The individuals who support (C.J.) day-to-day and made these ‘clinical type of evaluations’ about her behavior do not truly understand the repercussions in their ‘choice’ of words they used in describing (C.J.), and in our opinion this is a very dangerous practice. Why didn’t you ever elicit our input?  When we started this relationship, you agreed to a team approach – including input from Nancy and I who are also her advocates.

Meanwhile, Luxama’s agreement to reduce the Latuda dosage in December apparently did not result in a reduction in C.J.’s symptoms of tardive dyskinesia, at least in the short term.

On January 8, C.J. was taken by ambulance to Milton hospital for testing, according to an email to O’Keefe and Nancy from Petti. “We believe there is a neurological issue with C.J. as her cognitive abilities continue to decline,” Petti’s email added.

In her January 14 email to Luxama, O’Keefe stated that When C.J. was admitted to Milton Hospital, “the emergency doctor noted she was ‘highly medicated’ and inquired about the anti-psychotics she was taking as her cognitive ability was so impaired.” O’Keefe added in her email that the ER doctor “also noted she (C.J.) had trouble moving her jaw and couldn’t speak.  Are you aware that she has had accidents due to incontinence now? We have since learned that this is also one of the adverse side effects of Latuda.”

The day before, O’Keefe stated in a January 13 email to Luxama that “we want her OFF that medication now.” (Emphasis in the original.) Nancy also sent a similar email to Luxama and cc’d DDS officials, making the same request to discharge C.J. from the Latuda immediately. “She (C.J.) does not like the ‘way it makes her feel’ nor does she like the many negative side effects she has had to suffer through,” Nancy’s email stated.

That same day, Luxama did respond to Nancy, stating in an email that she was “sorry to hear she (C.J.) is not liking how the medication makes her feel and will send an order to the residence to discontinue the medication effective immediately. Thank you for reaching out.”

O’Keefe said C.J. is still suffering from the severity of Latuda’s side effects even though she has not been taking it for over a month. She said that in addition to needing a walker, C.J. now has difficulty with fine motor skills and has hand tremors. 

Violations of regulations

We are concerned that the prescription and administration of Latuda to C.J. violated DDS regulations, which state that no medication may be used without informed consent or “in quantities that interfere with the individual’s habilitation.” Habilitation refers to  services and supports that help DDS clients keep or improve skills and functioning for daily living.

In addition, the regulations state that medication “shall not be used by programs…for the convenience of staff or as a substitute for programming.”

It also appears that the inappropriate administration of Latuda to C.J. caused serious physical injury to her, which constitutes abuse under DPPC’s enabling statute. Serious physical injury is defined in DPPC regulations as including “harmful symptoms resulting from the use of medication or chemicals without informed consent or appropriate authorization.”

Left alone for first time in group home

In June 2019, a visiting nurse who was treating C.J. for pulmonary disease arrived at her group home and found her very ill in the residence on a couch. According to O’Keefe, the nurse, who is not associated with Delta Projects, said the only Delta Projects staff member in charge of the clients told her she needed to leave to drive another client to work.

O’Keefe said the Delta staff member made the assumption it was okay to leave C.J. even though it was DDS policy that a residential staff member must always be present. When the visiting nurse completed her scheduled visit with C.J., she needed to leave to see her next client, but did not want to leave C.J. alone. O’Keefe said the nurse found that C.J. was becoming increasingly lethargic and dehydrated.

O’Keefe said that after the nurse waited for over an hour for the Delta staff member to return, “she became exasperated and worried about CJ’s well-being,” and called O’Keefe.   

O’Keefe said that when she arrived at the group home, “I immediately took the nurse’s advice and didn’t wait for the Delta staff member to return because it was obvious my sister needed immediate medical attention.”  She took C.J. to Milton Hospital where she was admitted for dehydration and pneumonia. She was placed on an IV for 3 days.

In an email to O’Keefe on June 27, Colleen Mulligan, DDS area director, stated that she was requesting that Delta Projects “train/ re-train staff on (C.J.)’s medical needs…to ensure that this does not happen again.” Mulligan’s email added that, “At a minimum, the morning staff should have called the main office/Delta on-call person if they did not know what to do. They should not have left her…”

Nearly four months later, O’Keefe said, she received a call from a DDS investigator who had questions about the June incident. “After several questions,” O’Keefe stated in an October 25 email to her sister Nancy, “she (the DDS investigator) “came to the consensus that C.J. should be in a group home with nursing oversight, which I explained Delta does not have.”

Left alone for second time

But the June incident did not mark the last time C.J. was left alone in her group home. It happened again on January 31, O’Keefe said in the email sent that day to DDS Commissioner Ryder.

Once again, it appears DDS regulations were violated by the group home. It appears that the violations were of regulations stating that providers of residential supports must assure the presence of staff whenever an individual is present in the home.

“We are shocked and horrified that DDS would continue to contract with an organization such as Delta Projects who have proven over and over again their inability to provide safe care for our family member,” O’Keefe stated in the email to Ryder. “Agencies like Delta Projects are entrusted with caring for society’s most vulnerable population and DDS is responsible to ensure they are in compliance.”

Governor’s FY ’21 budget encourages more privatization of DDS programs

January 30, 2020 1 comment

Continuing an ongoing pattern, Governor Baker’s proposed state budget for the coming fiscal year is far more generous to corporate provider-based programs overseen by the Department of Developmental Services (DDS) than to DDS state-run programs.

Last week, Baker unveiled his $44.6 billion state budget plan, which would provide $2.15 billion in funding to DDS-related line items.

We’ve been concerned for years that the Legislature and a succession of administrations have underfunded DDS state-run budgetary line items — a trend that only encourages further unchecked privatization of those services.

Some key details of our analysis of Baker’s proposed budget for DDS are below:

State-run program line items

A key state-run program to start with is the DDS network of state-operated group homes.

Under Governor Baker’s Fiscal 2021 budget, the state-operated group home line item would be increased by $6.4 million over the current year, which is only just above the rate of inflation. The increase would bring the state-operated group home line item to $237.8 million in Fiscal 2021.

State-run group homes provide a critical backstop of care due to their low staff turnover and relatively low per-client abuse rate. Yet, data also show the number of residents in state-operated group homes has been dropping as the administration and Legislature have targeted more funding to the much larger network of corporate provider-operated group homes. DDS also does not routinely offer state-run group homes as a residential option to individuals.

Meanwhile, the state-run developmental centers line item would be cut in the coming year, continuing the pattern over the past decade. The developmental centers also provide an important backstop of care for some of the most profoundly developmentally disabled residents of Massachusetts.

Under Baker’s Fiscal 2021 budget, the cut in the developmental centers line item would be $560,000, which would amount to an inflation-adjusted cut of almost 3%. That would drop the line item to $104.3 million in Fiscal 2021.

The DDS administration line item, which includes critically needed DDS service coordinators, would actually get a modest increase under the governor’s budget. That line item would be raised by $5.3 million over current-year funding, to $80.2 million. That would amount to an increase of 4.6% when adjusted for inflation.

But among those three state-run program line items (state-operated group homes, developmental centers, and DDS administration), the average overall increase from the current year would be less than 1% when adjusted for inflation.

Moreover, since Fiscal 2012, those three line items will have been cut by an average of about 1.3% in inflation-adjusted terms. The developmental center line item alone will have been cut by $73.5 million, or more than 40%, since Fiscal 2012.

The two charts just below illustrate the trend lines since Fiscal 2012 for key state and provider-run programs in the DDS system.

Chart on provider group home vs. developmental center funding

 

Chart on other provider vs. state-run program funding

The corporate provider line items

In contrast to the state-run programs, three key provider-based line items — corporate provider group homes, provider-run day programs, and transportation services — would be increased on average by 4% from the current fiscal year, under Baker’s budget. Since Fiscal 2012, those three line items will have been increased, on average, by almost 90%.

Baker’s Fiscal 2021 budget proposes increasing the provider group home line item by $9.5 million, to $1.287 billion. That is a relatively small increase, given the size of the line item, and actually would amount to a cut of 1.7% when adjusted for inflation. However, funding for that line item has risen dramatically since Fiscal 2012. If Baker’s budget proposal is enacted, funding for provider group homes will have increased by $407 million, or 46%, over the past 10-year period.

Meanwhile, other provider-based line items would be increased by significant amounts next year, under Baker’s budget plan.

Under the governor’s budget, the provider-run transportation line item would be increased by $3.8 million, to $33.3 million over the current year, which is more than a 10% increase when adjusted for inflation.The provider-run day program line item would be increased by $14.4 million, to $253.9 million. That would amount to a 3.5% increase over the current year.

Since Fiscal 2012, the provider-run day program line item will have been increased by 75%, and the transportation line item by 146%, if the governor’s Fiscal 2021 budget is enacted.

Chart shows some clear trends

These funding trends can be seen in the two charts above. For instance, the first chart shows the opposite directions in which funding has gone regarding provider group homes and state-run developmental centers. We’ve long expressed concerns about the closures of four of the state’s six remaining centers between 2008 and 2014.

At nearly $1.3 billion, the provider group home line item now dwarfs every other DDS line item in the budget.

Similar trends can be seen in the second chart for other provider versus state-run line items. For instance, funding for state-operated group homes peaked in Fiscal 2016 at $238.3 million, in Fiscal 2021 dollars. Baker’s proposed funding for Fiscal 2021 for state-operated homes is still less than what was appropriated by the Legislature in Fiscal 2016.

Meanwhile, funding for provider-run day programs caught up with the funding level for the state-operated group homes in Fiscal 2019 and surpassed the latter line item in the current year. Baker’s proposed Fiscal 2021 budget would continue that upward trend for the day program line item.

While the combined state-run DDS administration and service coordinator line item would get a 4.6% increase next year under Baker’s plan, the funding trend for that line item has been essentially flat after peaking in Fiscal 2016 at $77.4 million.

In contrast, the provider-run transportation line item, while dipping slightly in Fiscal 2017, has continued to rise since then.

Other DDS line items

Overall, the DDS budget would be increased by just under 0.2% under the governor’s Fiscal 2021 budget proposal. It reflects a mixed level of increases and cuts for a number of other line items that don’t fall as clearly into the state-run or provider categories, but are a combination of the two.

The Turning 22 line item would get a very small increase of under $2,000 under the governor’s budget. That would amount to an inflation-adjusted cut of 2.4%. Interestingly, Baker’s budget message touted that he has been “fully funding” Turning 22 for the past four years.  It’s not clear on how that squares with the actual budget proposal.

Respite and Family Supports would be increased under the governor’s budget by $7.8 million, or 8.4%.

The Adult Autism line item would be increased by $7.8 million, or 22.5%.

Disabled Persons Protection Commission (DPPC)

The DPPC line item is not under the DDS budget, but the DPPC performs a key role as the state’s only independent agency that investigates abuse and neglect of disabled adults. Yet this agency is chronically underfunded.

Baker’s Fiscal 2021 budget would increase the DPPC line item by a very modest $129,000, which would amount to an inflation-adjusted increase of well under 1%. Since Fiscal 2012, DPPC’s budget will have been increased by 94%; but the agency is still unable to afford more than a handful of staff to investigate abuse complaints, and must hand most of those investigations off to DDS and other line agencies to investigate.

We hope, in upcoming meetings with key legislators, to impress upon them the importance of a more equitable funding allocation between state-run and provider-run programs.

If current trends continue, state-run services will continue to wither away through declining funding and attrition, and we will end up with a fully privatized system of DDS-funded services. We are concerned that that is a prescription for a race to the bottom in care.

A newspaper’s coverage of abuse and the enactment of Nicky’s Law are steps in the right direction

January 21, 2020 2 comments

One newspaper in Massachusetts has been shining a spotlight lately on the problem of abuse and neglect of persons with developmental disabilities in the state.

Meanwhile, the state Legislature took a strong step last week in barring abusive caretakers from working for providers in the system.

Yet these two positive developments also highlight the fact that the media in Massachusetts in general and the Legislature as a whole have to do more than they have been in recognizing ongoing problems in the care of persons served by the Department of Developmental Services (DDS).

As we have long maintained, these problems have gotten steadily worse as functions and services for the developmentally disabled have been steadily privatized over the years without sufficient oversight of the corporate provider-based system.

One newspaper’s systematic coverage and one important legislative victory appear to be the exceptions to the rule, which has generally been one of benign neglect on the part of the media and Legislature.

The media exception has been The Springfield Republican, which published an in-depth report on January 10 about a DDS corporate provider, Guidewire, Inc. The newspaper revealed, among other disturbing facts, that at a Springfield group home operated by Guidewire, staff encouraged residents to fight each other and awarded prizes including money, cigarettes, marijuana and alcohol.

Perhaps not coincidentally, the article ran just a few days before the Massachusetts House unanimously approved a bill that would create a registry of caregivers found to have committed abuse or neglect. Such persons would be banned from future employment in DDS-funded facilities. The bill known as “Nicky’s Law,” which was passed by the Senate in October, is expected to be signed into law by Governor Baker within the next 10 days.

A few days before the Springfield Republican article ran, the same newspaper published a follow-up to COFAR’s blogsite report about the termination of a DDS contract with another DDS provider, the Center for Human Development, to operate two group homes in which care was found to be substandard. In that case, COFAR had first reported allegations of poor care raised by the foster mother of a resident of one of the group homes.

Last year, the Republican followed up on COFAR’s initial reporting on CHD, and ran a comprehensive article about the failure of DDS’s licensure inspection process to identify ongoing problems in the two CHD group homes.

Both the reporting by the Republican and in COFAR’s blog posts helped to spur an internal investigation of CHD by DDS. Last fall, the DDS Bureau of Public Integrity cited potential “systemic issues” across CHD group homes.

Guidewire details underscore the need for Nicky’s Law

According to the Republican. eight employees of Guidewire were fired after the “fight club” details were brought to the attention of DDS in 2011. But the employees were given the right to return to work at other DDS-funded facilities in 2018. And while Guidewire was subject to a corrective action plan and staff were retrained, no criminal charges were filed in the case.

To that extent, the Guidewire case underscores the need for Nicky’s Law, which would potentially have prevented DDS from continuing to employ those caregivers.

Persons applying for caregiver positions in the DDS system currently must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states. However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the Disabled Persons Protection Commission (DPPC), it does not usually result in criminal charges. As a result, those findings of substantiated abuse are not made known to providers or other agencies seeking to hire caregivers. That’s why an abuse registry is needed in Massachusetts.

The Springfield newspaper cited COFAR’s own findings last September in which we identified Guidewire as one of the service organizations in the state with the most abuse complaints filed, substantiated and referred for criminal prosecution.

More recently, we analyzed DPPC data on a per-client basis to control for size of each provider, and found that between Fiscal 2010 and 2019, Guidewire was third highest out of 75 providers surveyed in the number of substantiated abuse cases per client. Guidewire was third as well in complaints referred per client for criminal investigation.

But abuse and poor care are problems that go far beyond one provider. COFAR analyzed the outcomes of more than 14,000 abuse complaints in the Fiscal 2010-2019 period.

Rest of the media needs to examine these issues

The Springfield Republican’s reporting shows the good things that can happen when the media shines a light on issues and activities that are causing harm. But it usually takes a commitment and cooperation among several media outlets to place these matters on the agenda of politicians and policymakers in order to bring about real change.

Unfortunately, with the exception of the Republican, the mainstream media in this state has shown little interest in systematically reporting on the serious problems that afflict the care of persons with developmental disabilities in the DDS system.

Major investigations have been undertaken of abuse of the developmentally disabled in group homes by newspapers in other states in recent years. Those reports include multi-part exposes starting in 2011 by The New York Times, in 2013 by The Hartford Courant, and in 2016 by The Chicago Tribune.

The mainstream media in Massachusetts has yet to to pay more than passing attention to the DDS system. We have also not had any success in getting a response from The Boston Globe to our concerns about currently proposed legislation that would make the state’s process of investigating abuse of the developmentally disabled far less transparent.

Children and Families Committee has yet to demonstrate a serious concern about the issues

We are also trying to persuade the state attorney general and the Legislature’s Children, Families, and Persons with Disabilities Committee to begin seriously looking at these issues. While we applaud the role played by the Children and Families Committee in getting Nicky’s Law enacted, the committee has yet to demonstrate a sustained commitment to examining and addressing the problems within the DDS system.

In 2018, the Children and Families committee held two informational hearings on abuse and neglect in the DDS system. But members of the general public were not permitted to present verbal testimony at either hearing, and the committee never followed up on those hearings with a report. It’s not clear what, if any, the purpose of those hearings was.

In the final analysis, media attention and the attention of legislators and policymakers are linked. Legislators, in particular, are not likely to act to address society’s problems if the media isn’t focusing on those problems. It seems we’ve entered an age in which the media’s attention is more fractured than ever before.

The enactment of Nicky’s Law is one example of a piece of legislation that the media did get behind. Yet, the enactment of that law is just a first step in what needs to be a comprehensive reform of the system.

Every now and then, a media outlet like The Springfield Republican gives us hope that there still are journalists out there who will go further than reporting on one bill and will examine the issues underlying the legislation.

Once the media focus is there, we think legislators and policymakers will act more systematically on issues of concern to those people they are supposed to protect — the most vulnerable people in society.

 

 

DDS terminates contract with provider to operate two problematic group homes

January 7, 2020 9 comments

The state Department of Developmental Services (DDS) has terminated a contract with a corporate provider to run two problematic group homes in East Longmeadow for persons with developmental disabilities.

The contract termination with the Springfield-based Center for Human Development (CHD) was confirmed to COFAR on Monday (January 6) by the provider.

The DDS action, which appears to be relatively unusual for the department, came after Mary Phaneuf, the foster mother of a resident of one of the group homes, alleged poor care in her son’s residence. She said she was told by DDS that due to the contract termination, her son, Timothy Cheeks, and other residents in his home will have to move this month to another residence operated by another provider in Longmeadow.

Starting in 2018, Phaneuf alleged a lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years. She also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Phaneuf’s allegations led to DDS investigations last year, which found “potential systemic issues” throughout CHD’s residences, according to a DDS summary document obtained by COFAR. Her allegations also led to the adoption of new management policies by CHD.

Mary Phaneuf and Tim Cheeks2

Tim Cheeks with his foster sister Nicole Phaneuf Sweeney

COFAR’s blog posts in July and in August concerning Phaneuf’s allegations, and coverage by The Springfield Republican, led to the DDS investigation of the provider.

No comment yet from DDS

As of today (January 7), DDS had not responded to an email from COFAR on December 18 seeking comment on the status of CHD’s contract to operate the residences or the results of its investigations.  In the same email, which was addressed to DDS Commissioner Jane Ryder, COFAR also requested completed reports and action plans in the case, under the state’s Public Records Law. 

As required by the Public Records Law, DDS did respond on January 3 to the public records request in COFAR’s email, saying that the department expected to produce the requested documents by January 10.

COFAR also sought comment on December 18 from CHD. In an email in response on January 3, Ben Craft, vice president of community engagement for CHD, stated the following:

CHD is fully engaged in comprehensive changes in policy and operations to return and sustain the quality of our DDS services to the high standards that we have upheld across our organization for nearly fifty years. Substantial implementation of these improvements has already occurred, and that work continues.

CHD will continue to work hand in hand with DDS to help ensure that our system of care for people with disabilities is meeting their needs while at the same time empowering them to live with the highest degree of independence possible. CHD will actively participate in continuing dialogue with DDS and other state partners about opportunities to improve public-private partnership in service delivery and policy.

Regarding the continuing operation of the two residences, Craft said in the email that CHD, which owns one of the two homes in question, had entered into a lease arrangement for that residence with the new provider, Mental Health Association, Inc. (MHA), “to ensure a smooth transition as MHA prepares homes to accept individuals now being served by MHA.” MHA is also based in Springfield.

Phaneuf said she was told the lease is temporary and that is why her son and the other residents of his home will have to move later this month to an MHA-run group home in Longmeadow. Phaneuf said she was told that two CHD employees from the original house would transfer to her son’s new residence, but would be employed by MHA.

DDS found “potential systemic issues” with CHD

In December, Phaneuf forwarded to COFAR an untitled and undated summary document from DDS about the investigations by its licensure office and its financial investigation unit of CHD. The DDS summary document appears to contradict previous statements by CHD that the problems Phaneuf raised were largely the result of mismanagement by a single staff member – a former house manger of Tim’s group home.

The summary of the review by the DDS Bureau of Program Integrity, which appears to date from September, specifically stated that:

While some of the issues (raised by Phaneuf) can be attributed to the former house manager, the lack of oversight and control procedures are indicators of potential systemic issues across CHD homes.

The DDS summary document also cited a “significant volume of missing and erroneous records provided by CHD” for DDS’s review, and recommended that a full audit of client funds records for all of CHD’s DDS-funded group homes be done by an external agency or firm. The document also said that the “complete independent audit” should cover a two-year period.

In addition, the DDS document stated that while there was no direct evidence of fraud by CHD, the agency must provide complete restitution of the personal funds “for which they cannot provide validation of appropriate expenditure.”

The DDS document also cited a failure by the former house manager to maintain financial transaction  records, and a lack of communication between the corporate business office and house manager around financial transactions.

CHD did not fully implement new policies

According to the DDS document, a review by the DDS Office of Quality Enhancement, the department’s provider licensure unit, found that as of September, CHD had not fully implemented new policies, oversight, or checks and balances that were adopted in January. The OQE recommended that CHD “improve its service delivery, with a focus on training and supervision of staff, healthcare coordination, and management of individuals’ benefits and personal spending money.”

The OQE also noted in the summary document that:

  • Despite heightened focus over past 7 months, some individuals’ medical needs were still not being met.
  • CHD’s Social Security representative payee and funds management procedures needed to be “thoroughly examined and modified.”
  • Promising oversight mechanisms such as quality assurance audits had not been fully implemented.
  • CHD needed to ensure that staff in key management and supervisory positions in Tim’s and the second CHD group home were “thoroughly knowledgeable of DDS regulations, policies, and licensing standards.”

Tim’s weight gain and subsequent medical diagnosis not reported

In August, in the wake of COFAR’s blog posts about the case, CHD announced that it had adopted a series of new policies to better manage and track care in its group homes, including a system to automatically inform family members and guardians of medical appointments and their outcomes. That new family information system was scheduled to be implemented in that same month, according to CHD.

However, Phaneuf said that in September, she noticed Tim had gained a considerable amount of weight in a short period. She said she met with Tim’s primary care doctor on September 10th and learned only then that in late July, Tim had been found to have gained 20 pounds and that medical lab tests had been ordered.

In an email sent to CHD officials on September 11, Phaneuf said the doctor told her the lab tests showed Tim was prediabetic and had hypothyroidism, and that he needed to be placed on a low-carbohydrate diet with daily exercise immediately. “I was not aware of any of this (prior to speaking to Tim’s doctor),” Phaneuf said.

Phaneuf said that after she contacted DDS and CHD about the situation, CHD failed to provide her with an outline of a proposed  food or exercise plan. And at Tim’s Individual Support Plan (ISP) meeting in October, Phaneuf said she was informed that as of that date, no trainings had been scheduled for the staff regarding a low-carb diet or exercise plan for Tim.  

Phaneuf said that while CHD said it would pay for Tim to see a nutritionist  since his insurance would not cover one, Tim does not have the cognitive ability to adequately process nutritional counseling nor does he have control over his own food. CHD shops, cooks and serves food to Tim, she said.

In his January 3 email, Craft said that CHD could not comment “on specifics of individuals’ medical care.” His email added that, “however, CHD program and leadership staff have maintained regular communication with family members and guardians about medical care, and CHD has done everything possible to ensure all individuals’ health needs are met.”

Phaneuf never received written notice from DDS of the pending closure 

Phaneuf said that in December, she was informed verbally by a DDS official of the termination of the CHD contract for Tim’s group home and the need for him to move to another residence. She said that as of Monday (January 6), she still had not received a written notice from DDS about either of those developments.

CHD a “large, multifaceted organization”

According to its online 2017 DDS licensure report, CHD is “a large, multifaceted organization” that “continues to maintain services throughout western Massachusetts as well as Connecticut.”

As of the start of the current fiscal year, CHD operated 23 DDS-funded group homes in Massachusetts, serving 76 clients, according to data from DDS.

CHD’s most recent online fiscal report to the state, which was for Fiscal 2018, showed that CHD received total operating revenues of $98.4 million primarily from a variety of state agencies, including $9.7 million from DDS.

Questions remain

While the contract termination action by DDS is welcome, it still raises a number of questions, including why the department’s provider licensure system itself did not identify the problems.

Little or nothing was initially done by DDS in response to Phaneuf’s concerns, and no investigations occurred until after COFAR posted about the case last July and there was subsequent coverage about it in The Springfield Republican.

COFAR has never gotten an answer from DDS as to why the normal DDS licensure review of CHD in 2017 did not flag any of the issues that Phaneuf subsequently raised. DDS, as ususal, appears to have reverted to its usual mode of not commenting or issuing any information in response to our queries that isn’t specifically required under the Public Records Law.

As we’ve said many times before, the problems finally identified regarding CHD are not unique to this one provider, but appear to be systematic across the entire DDS provider network. Over the past year, we have met with key lawmakers and with several state agencies, including the offices of the attorney general, inspector general, and state auditor to suggest the need for a comprehensive investigation of the DDS group home system.

Per-client abuse data demonstrate relative safety of state-run residential facilities

December 9, 2019 1 comment

A new per-client analysis by COFAR of abuse data from the state shows that state-run residential facilities for persons with intellectual and developmental disabilities have had below-average substantiated abuse allegation rates and referrals for criminal investigations among providers in Massachusetts.

COFAR first reported in September on our ranking of residential service providers based on raw data from the Disabled Persons Protection Commission (DPPC). That data concerned more than 14,000 allegations of abuse of persons with intellectual and other developmental disabilities.

Since then, we received information from the Department of Developmental Services (DDS) on the number of clients served in both state-run and corporate provider-run group homes and other facilities.

As a result, we have analyzed the DPPC data on a per-client basis. We’ve also combined total abuse data for those providers operating in more than one region of the state.

The per-client data corrects for larger providers, including the regional system of state-operated group homes. The state-operated residences in total serve more clients than any individual corporate DDS provider.

The data show that the total network of state-operated homes, with 1,118 clients, had more abuse allegations in total than other individual providers between Fiscal 2010 and 2019. But on a per-client basis, the state-operated homes dropped down the list of providers, and were well below average in terms of both substantiated allegations and criminal referrals between Fiscal 2010 and 2019.

Also, the Wrentham and Hogan developmental centers were at or near the bottom of the list of total providers in every measure except for number of clients. In Fiscal 2018, both developmental centers still had well above the average number of clients among providers.

Wrentham and Hogan are the state’s only two remaining developmental centers that meet federal standards for Intermediate Care Facility (ICF) services.

The chart below lists our rankings of the top 10 and bottom 10 providers in terms of numbers of substantiated abuse allegations per client and referrals for criminal investigation per client from Fiscal Years 2010 through 2019.  State-run facilities are highlighted to show their relative placements on the list.

(Complete results of our findings can be found in spreadsheets at this link: DPPC abuse data per client FY 10 to FY 19 sorted.)

 

Total subst. complaints and DA referrals per client chart

These findings are in line with our reporting that state-run residential centers and group homes tend to employ staff with higher levels of training and lower rates of turnover than do corporate-run facilities.

Despite that safety record, the Baker administration and administrations prior to it, have reduced funding for state-run facilities in the DDS system, and boosted funding for corporate, provider-run residences.

In addition, DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.  As a result, those facilities are slowly dying by attrition.

Ranking by number of residential clients

In COFAR’s latest analysis, we re-examined data from DPPC concerning 79 residential providers, 75 for which DDS provided data on the number of clients served. The total providers analyzed included the Wrentham and Hogan Centers.

The total number of clients served in all residential facilities for which DDS provided data was 8,218 in Fiscal 2018.  (Fiscal 2018 was the middle year in the range of years of client data provided by DDS, which was from Fiscal 2016 to 2020.)

As noted, DDS state-operated group homes, combined from all regions of the state, had a total of 1,118 clients in Fiscal 2018, according to DDS records. That is nearly three times the size of the next largest provider, Seven Hills, which had 397 clients.

The total number of clients in provider-run group homes in Fiscal 2018 was 6,692, according to the DDS data. (Data were not analyzed for providers that had relatively few clients.)

At 272 residents and 136 residents respectively, the Wrentham and Hogan Centers had well above the average number of 92.9 residents served by individual corporate providers in Fiscal 2018.

Ranking by number of abuse allegations 

As noted, the entire network of state-operated group homes had the highest number of abuse complaints among providers from Fiscal 2010 through 2019, according to DPPC data.

There were a total of 2,045 complaints involving the state-operated group homes, which was nearly three times higher than for the individual provider with the next largest number of complaints, Vinfen.  But that would normally be expected given the state-operated network is so much larger than any single provider.

The total number of complaints among all residential providers was 14,088 in the period reviewed. The average number of complaints per provider was 178.

Ranking by number of substantiated abuse allegations per client 

When ranked by total allegations of abuse per client substantiated after investigations either by DPPC or DDS, the state-operated group home network fell to 48th on the list, with a per-client substantiation rate of 0.07. That was well below the average rate among providers of 0.13 substantiated abuse allegations per client.

The Hogan and Wrentham Centers were ranked 71 and 72, with rates of 0.01 and 0.00 substantiated abuse allegations per client respectively.

The Judge Rotenberg Center rose to No. 1 on the list, with a rate of 0.55 substantiated allegations per client.

The average rate among providers of substantiated abuse per client was 0.13. (See chart above.)

Ranking by number of allegations per client referred to DA’s

When ranked by the number of allegations referred per client to district attorneys for criminal investigation,  the DDS state-operated group home system fell even further, to a ranking of 50 out of the 75 providers.

The state-operated group home referral rate was 0.12 allegations per client, well below the average among all providers of 0.21 referrals per client.

The Hogan Center was ranked 70th at 0.03 referrals per client, while the Wrentham Center was ranked 75th, at 0.00 referrals.  That was the lowest among providers for which per-client data were available.

The Judge Rotenberg Center stayed at the top of the list, with a rate of 1.5 criminal investigation referrals per client.  That was more than double the provider with the second highest ranking — Becket Family of Services.

Continuing need for transparency

As we’ve said before, we think this type of provider-based data should be made easily available and accessible online by DDS and DPPC. We have continued to urge the Legislature’s Children, Families, and Persons with Disabilities Committee to approve a bill (H.93), which would require DDS to post online information about provider-based abuse data and performance.

We are urging people to call the Children and Families Committee at (617) 722-2011 (for Rep. Kay Khan, House chair) and (617) 722-1673 (for Senator Sonia Chang-Diaz, Senate chair), and ask the committee to vote favorably on the bill.

We also hope that this data will underscore the need for state legislators to recognize the importance of state-run residential care for persons with intellectual and developmental disabilities.

The state-run residential facilities provide an essential backstop of care for persons who are subject to abuse or are simply not able to cope in the corporate-run group home system. Families and guardians should be routinely informed about state-run care as an option, and should certainly not be forced to fight DDS in order to get that option.

A recap of our cases of abuse and neglect in the DDS system

November 18, 2019 7 comments

We receive calls on a regular basis from family members and guardians of persons in the Department of Developmental Services system who are dealing with, abuse, neglect, poor care, and related issues.

We always try to help where we can by offering advice and working with the Department of Developmental Services and other agencies and organizations to rectify the situations, and, in some cases, informing the public about the matters through our blogsite and newsletter.

Below are summaries of some of the major cases that have appeared on this blogsite in recent years. We’re happy to say that at least some of these cases were ultimately resolved favorably for the individuals, families, and guardians involved; but these cases are all disturbing signs of a broken system.

Most, though not all, of the cases brought to our attention have involved incidents that occurred in group homes or day programs operated by corporate providers under contract to DDS. We occasionally get calls about incidents in state-operated group homes, and some of those cases are summarized below. In many instances, however, problems were ultimately solved when victims or other clients involved were transferred from provider-run to state-run facilities.

That’s one reason we have advocated for so long for the preservation of state-operated group homes and the two remaining DDS-run developmental centers. It has been our experience that the rapidly expanding privatization of residential and other DDS services has created a race to the bottom in terms of care and services — a system in which abuse and neglect are rampant.

Every year, as state funding for the provider-run residential line item has risen, the number of abuse complaints received by the Disabled Persons Protection Commission (DPPC) has risen as well. In many cases, the DPPC and other agencies lack resources to adequately investigate these complaints. That is reflected in the individual stories that we hear when people call us.

In one of the cases we’ve included below, a young woman endured poor and in some cases life-threatening care in a series of provider-run facilities and a state-operated residence until she was finally admitted to the Wrentham Developmental Center where the family described her care as “exquisite.” That’s because the state-run developmental centers must meet strict federal standards for care that are waived for facilities in the “community-based” system.

There are other cases recounted below in which family members and sometimes guardians have been subjected to intimidation and retaliation by providers and by DDS after they raised concerns about poor care.  There are even cases in which families and guardians have been barred from entering their loved ones’ group homes or even prohibited from all contact with those family members — situations, which we have argued violated DDS regulations.

Mixed record of official concern

We have continued to raise these concerns with DDS, the DPPC, a variety of other legal enforcement agencies, the media, and advocacy organizations, and with key legislators.

Last year, after one particularly egregious case, recounted below, in which a young man nearly died in a group home after aspirating on a piece of cake, the Legislature’s Children, Families, and Persons with Disabilities Committee, did hold two informational hearings on abuse and neglect in the DDS system. But we have heard of no follow-up on those hearings by the committee.

In another case in which a provider apparently failed to take a resident of a group home for either doctor’s or dentist’s appointments for seven years, the provider acknowledged failures in its protocols and took corrective actions after COFAR brought the case to the public’s attention. In addition, DDS opened an investigation of the provider.

We have continued to ask the Children and Families Committee to approve H.93, a bill that would improve transparency in the DDS system about abuse and neglect. The bill would require DDS to post easily understandable, comparative information on its website about abuse and neglect and provider performance.

One of the cases below, involving the death of Karen McGowen, highlights the lack of transparency in abuse and neglect investigations done by the DPPC, in particular. The agency refused to release any investigative records in the case, and, as we have reported, is trying to further ensure the secrecy of its records.

In the cases summarized below, the families and guardians agreed to go public. Not included are many cases in which we have and continue to advocate on behalf of families and guardians who asked us not to reveal the details of their cases publicly.

Timothy Cheeks: Center for Human Development group home, East Longmeadow, staff neglect

(More information here)

In 2018, Mary Phaneuf, the foster mother of Timothy Cheeks, began raising concerns  about Tim’s care in a group home operated by the Center for Human Development (CHD) in East Longmeadow.

Mary’s concerns included a lack of proper medical care for Tim, 41, and no documented visits to a primary care physician or dentist for seven years. Mary also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

After COFAR contacted CHD about the matter, the provider’s CEO and president acknoweldged “failures to follow protocols,” among other problems and said the organization was taking a range of corrective actions.  In an August 2019 statement provided to COFAR, DDS Commissioner Jane Ryder said that DDS was investigating the allegations and was requiring the Springfield-based provider to implement a corrective action plan.

Despite the seriousness of the issues that Mary raised, an online June 2017 DDS licensure inspection report for CHD did not mention those or similar problems of neglect in CHD’s group homes.

Tommy Shea: Staffed apartment, staff neglect

(More information here)

Maureen Shea’s son, Tommy,  who was 33, had an intellectual disability and was subject to epileptic seizures while asleep.

Tommy’s bedroom in his staffed apartment was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.

Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries and that they had not been adequately trained in how to position the device. But provider managers had repeatedly assured Maureen that the staff were being trained and were knowledgeable about Tommy’s medical equipment.

Tommy had just returned on June 7, 2017, from a two-week stay in a hospital to his apartment. The following day, Maureen received a call from the residential supervisor to come to the residence immediately. When she arrived, the police were there. They told her that Tommy had died and that he had been found face-down on his bed. The batteries in the monitor were later found to be dead.

Maureen is pushing for S.73, a bill, which specifies that when a disabled individual is discharged from a hospital to a residential group home, a licensed medical professional from the group home must review and acknowledge the full requirements of the hospital discharge plan with respect to life support equipment. The medical professional must then advise the group home staff about those requirements.

Family separation case, isolation, family intimidation

( More information here)

In November 2015, a DDS guardian imposed a three-year ban on family contact with a developmentally disabled woman, and specifically prevented David and Ashley Barr, the woman’s father and sister, from visiting her.

The woman has been diagnosed with an intellectual disability and mental illness.

The guardian never clearly explained the reason for her family separation policy, which was nevertheless been upheld by DDS.  For the next three years, the guardian prohibited all members of the family other than an aunt from having any contact with the woman, and would not even inform the family as to where she was living. We have withheld the woman’s name because she was a victim of sexual assault.

In November 2018 email to Ashley, the guardian stated that she was finally granting permission to Ashley and David to visit the 30-year-old woman for the first time since November 2015.

In her email, the guardian wrote that she would now allow visits because the woman’s mother, Nancy Barr, had been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003. No members of the family other than the woman’s mother were involved in the abuse or were ever charged in the case.

Karen McGowen: Unexplained death, day program, provider unknown, records kept secret

(More information here)

Karen McGowen, a DDS client, was killed in an apparent accident in November 2017. She reportedly fell from a wheelchair lift while getting out of a van at her Pittsfield-based day program funded by DDS.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, confirmed it was investigating Karen McGowen’s death. The DPPC denied all requests from COFAR for the records in the case.

Holly Harrison: TILL, Inc. group home, Danvers, staff neglect and poor care, family intimidation

(More information here)

Despite a state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency upheld a directive barring a guardian of a developmentally disabled woman from entering her group home.

The August 2017 directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly Harrison.

It appeared that the only reason for TILL’s prohibition against Susan from entering the home and for a subsequent notice of eviction of Holly was that Susan had pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions on a number of occasions. Susan had also complained about conditions in the residence.

In addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan had in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

David Buckley: DDS group home, West Peabody, staff physical abuse;  provider-based group home, Hamilton, staff sexual abuse

(More information here)

On the morning of March 30, 2001, David Buckley, received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in a West Peabody-based group home run by DDS. The temperature of the water in the residence was later measured at over 160 degrees.

David died from complications from the burns 12 days later, yet no one was ever charged criminally in the case, and the DDS (then Department of Mental Retardation) report on the incident almost unbelievably did not substantiate any allegations of abuse or neglect.

Before that shower incident, David had endured a series of incidents of alleged abuse and neglect in a provider-run group home in Hamilton, including an alleged sexual assault by a caregiver. That incident had been witnessed by another staff member of the home. Yet, the witness failed to report the alleged abuse for two weeks, and, as a result, no one was ever criminally charged in that case either.  

Alexa Horn: Multiple residences, abuse neglect. Care at Wrentham Center deemed “exquisite.”

(More information here)

Alexa Horn , who has Rett Syndrome, a neurological disorder, had lived at home until she was 16. At that time, her parents, Pat and Michael, explored the possibility of getting Alexa into the Fernald Developmental Center, but they were told Fernald was closing.

Pat said she and Michael found a special needs residence for Alexa, but she developed a urinary tract infection and a subsequent sepsis infection there. The infections occurred after direct-care staff failed to tell the facility’s nursing staff that Alexa had not eaten or drunk anything for almost 24 hours.  Alexa was cared for in the intensive care unit at Boston Children’s Hospital for two weeks and was transferred to Franciscan Children’s Hospital for six weeks of rehabilitation.

When she turned 22, Alexa was placed in a DDS-funded group home near her family home in Watertown in which the care was quite good for a number of years. After five years, however, the residence started to experience a high degree of turnover of house managers, and new direct care staff were hired with little apparent training or qualifications.

Pat said the residence became dirty, clinician appointments were missed, protocols for administering Alexa’s medications and her feeding tube were not followed, and her personal hygiene degraded to the point that she had to be treated for ringworm, a type of fungal infection of the skin, on numerous occasions.

In 2014, Alexa fell out of her shower chair while a staff member was showering her because the staff member had undone her safety belt in order to wash her back. Her injuries required a trip to the emergency room and an MRI. Miraculously, Alexa did not sustain any serious injury in that incident, but she did suffer a significant amount of soft tissue damage to her face and broken blood vessels in her eye.

In another incident, the same caregiver failed to check the rate of the feeding pump when setting up her g-tube feed, and Alexa received 12 hours worth of food in a two-hour period, causing her to vomit and aspirate.

Early 2015, Pat said, she was informed by staff during a weekly Saturday visit that Alexa’s leg had been hurting her since the beginning of that week, but that the house manager had not taken her to be assessed by her doctor. The Horns called the manager on duty that weekend, who finally took Alexa to a hospital emergency room where an x-ray confirmed that Alexa had a fracture of the tibia.

The Horns then arranged to have Alexa sent to the Marquardt skilled nursing facility on the grounds of the then closed Fernald Center rather than to have her discharged back to the group home.

During her first months at the Marquardt, as she was recovering from her broken arm, Alexa contracted pneumonia and respiratory failure. After two weeks on a respirator at Mt. Auburn Hospital, she was transferred to a rehabilitation hospital where she contracted a ventilator-acquired pneumonia and a gastrointestinal infection, and suffered from serious seizures because of the medications given to combat the infection. After two and half months, she was finally well enough to be transferred back to Marquardt.

In August of 2016, the Horns learned that the Marquardt center was going to be closed, and Alexa finally became a resident of  the Wrentham Developmental Center in February of 2017. They termed the care at Wrentham “exquisite.”

Ryan Tilly: NEEDS Center, Inc., abuse and neglect, family intimidation, group home in Haverhill

(More information here)

Ryan Tilly, who has Down Syndrome, had been living in his provider-operated group home in Haverhill for only four months in March of 2016 when he was allegedly assaulted by a staff member of the residence.

The Tillys maintain that in addition to the assault, Ryan was subjected to neglect in the group home, which is operated by the NEEDS Center, a DDS provider.  He was also harassed by another resident of the group home so severely in 2016 that he continued to isolate himself in his room there and was afraid for a period of time to take showers in the residence.

Rather than working with the family to address those problems, both NEEDS and DDS initially turned against the parents, according to the Tillys and to documents in the case. The Tillys were accused of being “volatile and unpredictable,” and of fabricating a charge that the staff was failing to clean clothing that Ryan had soiled.

Ryan’s father, Brian, was banned for months from visiting Ryan in the NEEDS residence, while Deborah had to make appointments in order be able to see him.

A DDS investigation of the Tillys’ allegations regarding Ryan’s clothing determined that there wasn’t sufficient evidence to charge the group home with neglect in the matter; but the report did not refute the allegations.

In September 2016, DDS recommended that NEEDS and DDS meet regularly with the Tillys to “foster cooperation,” and that DDS explore possible new residential options for Ryan. But neither NEEDS nor DDS appear to have fostered that communication, at least initially. The restrictions against the Tillys on visiting Ryan in the group home continued through at least October of 2016, according to emails from the provider.

Yianni Baglaneas: Bass River, Inc., neglect, cover-up, group home in Peabody

(More information here)

In April 2017, the staff of a group home in Peabody failed to react for nearly a week after Yianni Baglaneas, 29, reportedly aspirated on a piece of birthday cake in the residence. Yianni was admitted to Addison Gilbert Hospital in Gloucester in critical condition, and spent 11 days on a ventilator and a week in the Intensive Care Unit at Mass. General Hospital.

According to a DPPC report on the incident, the residential director of the group home acknowledged instructing staff of  the residence not to cooperate with the DDS investigation into the matter. The director also acknowledged removing records from the facility.  The DDS investigator was subsequently unable to locate key records relating to Yianni’s care.

The DDS report stated that charges of abuse and mistreatment were substantiated in the case against seven employees of the provider, Bass River, Inc. The report found that the group home staff was negligent in failing to ensure that Yianni, who has Down Syndrome, regularly used a portable breathing mask at night called a CPAP (continuous positive airway pressure) machine. Based on the input of a medical expert, the report concluded that the failure to use the machine was the cause of the aspiration that led to Yianni’s near-fatal respiratory failure.

Andy McDonald: Family intimidation

(More information at here)

DDS has ignored requests by the parents of Andy McDonald for a new clinical evaluation of  Andy, who was deemed too dangerous in 2006 ever to be allowed to visit his family home in Sherborn.

Since Stan and his former wife voluntarily relinquished their guardianship of Andy in 1986 as part of a custody battle, Andy, who is intellectually disabled, has lived under a series of court-appointed guardians.  Like many people who lose or fail early on to secure guardianship of developmentally disabled members of their families, Stan and his current wife, Ellen, have been repeatedly stymied in their efforts to obtain that guardianship.

Stan and Ellen are rarely even informed about major events or issues regarding Andy’s guardianship; and the Middlesex County Probate Court failed for six months in 2016 to appoint an attorney to represent Andy, as required by law.

COFAR is supporting a bill (H.1415), which was first filed in 1999 on behalf of the McDonalds. The bill would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals. Despite no known public opposition, the bill has never been approved by the Judiciary Committee.

 Anthony Remillard: Templeton Developmental Center; and Brett Reich, Lifeworks, group home in Attleboro, neglect and lack of supervision by DDS and the provider

(More information here)

Brett Reich and Anthony Remillard are both men with intellectual disabilities, and both either served prison time or were faced with prison time for committing assaults. In each case, DDS appears to have failed to provide adequate supervision and treatment for them.

Unidentified man, Lowell General Hospital, neglect, lack of training

(More information here  and here)

A 2012 report by the state Department of Public Health exonerated Lowell General Hospital in the case of an intellectually disabled man who died of an apparent heart attack in 2012 after having been sent home twice by the hospital without any significant treatment.

The DPH report confirmed that the 51-year-old patient was discharged twice from the hospital in two days, and was pronounced dead after he was brought back to the hospital for the third time.

Despite the exoneration, the report appeared to leave many questions about this case unanswered — particularly whether the man, whose identity has been withheld, may have received inadequate care because hospital staff was not properly trained in dealing with developmentally disabled people.

This was one of three cases that were brought to COFAR’s attention in 2011 and 2012 in which DDS clients, each of whom happened to be a man in his 50’s, died suddenly after being transferred from developmental centers to state-run group homes operated by Northeast Residential Services, a division of DDS.

A second case was that of a former resident of the Fernald Developmental Center, who died on July 6, 2011, after having ingested a plastic bag in a Northeast Residential Services group home in which he was living in Tyngsborough.  In that case, a DPPC report concluded that there was a lack of adequate supervision of the man by his caregivers, although the investigative agency was unable to determine whether the man had ingested the plastic bag while he was in the group home or his day program or was being transported between the two.

In a third case, a former Templeton Center resident died on July 24, 2011, four days after he was transferred to a state-operated group home in Tewksbury.  The cause of death was reportedly a blood clot in his lung.

Paul Stanizzi: DDS Northeast Residential Services group home in Chelmsford, abuse; previously, Edinburg Center group home in Bedford, neglect and possible abuse

(For more information here  and here)

In February 2019, two staff members of a DDS group home were arrested for allegedly hitting and slapping Paul Stanizzi, a 50-year-old intellectually disabled man who is non-verbal.  This was the second residential facility in which Paul was allegedly injured or assaulted by staff.

In June 2014, the DPPC substantiated charges of abuse and neglect against a staff worker in a Bedford, provider-run group home in which Paul was seriously injured the previous August. Paul was at least partially paralyzed in that incident in that residence, which is operated by The Edinburg Center, Inc.  According to a DPPC report on the incident, Paul was found lying on his back in his room by the staff worker on the morning of August 27.

The staff worker, who had been on the overnight shift, told investigators he had heard noises in Paul’s room during the night, but never investigated them and then fell asleep for several hours during his shift.

Paul, who is non-verbal, was taken to Lahey Clinic in Burlington, which determined he had a spinal injury.  No group home staff accompanied Paul to the hospital, according to the report.

Sara Duzan: Becket Family of Services, Inc. group home in Westminster, abuse, neglect, family intimidation

(More information here)

In 2013, a DDS guardian issued an order forbidding the family of Sara Duzan, a woman with an intellectual disability from all communication with her.

Members of the Duzan family said they were concerned that Sara was been subjected to abusive physical restraints and seclusion at the Becket residence, but that they had had no way of knowing what Sara’s care and living conditions really were.

Sara, then 21, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from both an admission by Sara’s mother, Maryann, that she once lightly slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that while the family had never abused Sara, they had been uncooperative with providers in caring for her.

John Burns: Center for Human Development, Alleged Abuse

(More information here)

In August 2012, a jury acquitted a staff member of a group home operated by the Center for Human Development (CHD) in Springfield of allegedly assaulting John Burns, a man with an intellectual disability, during an outing on Cape Cod for clients of the home.

Sheila Paquette, of Westfield, Burns’ sister and guardian, ultimately filed the assault charge against the staff member herself in July 2010 when she became convinced no law enforcement agencies were going to do so.

It was only after Paquette filed the charge that the DPPC sent a state trooper to her house to investigate, she said. Despite that, the case languished for months at a time, beset by bureaucratic snafus and witness no-shows that caused the trial to be postponed four times.

When the trial finally took place, the District Attorney’s prosecution effort seemed half-hearted. Among other questions COFAR had about the case was why no one from the DPPC or its state police unit was called to testify at the trial.

The DPPC had issued a comprehensive report on the incident in February 2011, which did find sufficient evidence to conclude that Burns was “seriously injured” by the caregiver.

Tholda Chhom: Northeast Residential Services, Chelmsford, lack of supervision

(More information here)

In June 2011, a resident of a state-run group home in Chelmsford walked out of his residence, went next door and attacked a pregnant woman as she was sitting in her living room with her husband and three-year-old daughter.  The man managed to tear off Amy Hillman’s shirt and jump on top of her before he  was pulled away by Hillman’s husband, James.

The group home resident, Tholda Chhom, and James Hillman ended up in the front yard, where Chhom continued to charge at Hillman before running back to his residence just before police arrived, according to witnesses.  Chhom was later charged with assault and attempted rape, and was then placed in a “more secure state facility,”  according to The Lowell Sun.

COFAR is concerned that this case shows that even state-run community residences lack an intensive care model that meets the federal standards set for Intermediate Care Facilities.  ICF-level care, which exists only in two remaining developmental centers in Massachusetts – the Wrentham and Hogan Centers — stipulates that residents receive onsite clinical, medical, and nursing care and full-time supervision.  Not everyone with intellectual disabilities needs this level of care.  Only a small fraction of them do.  But Chhom would appear to be one of them.

Nearly inaccessible DPPC data illustrates widely varying abuse problem among group home providers

September 19, 2019 8 comments

An analysis by COFAR of data provided by the Disabled Persons Protection Commission (DPPC) confirms what many families of persons with developmental disabilities know from often bitter experience.

That is that providers to the Department of Developmental Services of residential and other services have widely different track records of abuse and neglect.

Unfortunately, families and guardians must learn about those differences almost exclusively by trial and error. There is currently no online source of comparative information about abuse and neglect among providers in Massachusetts.

In our analysis (see chart below), we were able to identify which providers had the highest numbers of complaints lodged against them, the highest numbers and percentages of substantiated complaints, and the highest numbers and percentages of complaints referred for criminal investigation.

(See complete analysis of all of the providers with highest and lowest results here.)

If family members or guardians or members of the general public wanted this information on an ongoing basis, they would have to do what we did. First, we had to file a Public Records Law request with the DPPC for abuse data broken down by region and provider from Fiscal Year 2010 to the present.

Next we had to sort the regional raw data by provider, which the DPPC provided on spreadsheets, and literally count the number of complaints listed for each provider and the number of substantiations and referrals for investigation. It was a lengthy process that took us weeks to complete.

In sum, we tracked the disposition of more than 14,000 complaints lodged against roughly 120 providers, including DDS itself as a provider of residential services in developmental centers and state-operated group homes.

Of the total complaints tracked, an average of 116 were lodged against individual providers between Fiscal 2010 and 2019.

In addition, an average of 8 complaints per provider, or 6.7% of total complaints against providers, were substantiated after investigations supervised by the DPPC.

Finally, an average of 13 complaints per provider, or 11.2% of complaints, were referred to district attorneys offices for criminal investigation.

DPPC provider abuse data summary chart4

State-operated facilities tend to have lower percentages of substantiated abuse

While two state-operated group home networks had the highest number of complaints in the Northeast and Southeast regions respectively, the state-operated residences had below average percentages of complaints substantiated or referred for criminal investigation.

State-run developmental centers were at the bottom of the list in terms of reported abuse. The former Templeton Developmental Center (now state-operated group homes)  had only 25 complaints lodged in the 10-year time frame, and zero complaints substantiated or referred for criminal investigation.

The Wrentham Developmental Center had 71 complaints, but only 1 substantiated and none referred for criminal investigation. The Hogan Regional Center had 28 complaints, 1 substantiated, and 4 referred for criminal investigation.

Proposed legislation would require DDS to provide information online

Late last year, we asked Representative Daniel Cahill to file a bill in the current legislative session that would require DDS to post easily understandable, comparative information on its website about abuse and neglect and provider performance.

The bill (H.93), which is modeled on an online database in the state of Illinois, has been in the Children, Families, and Persons with Disabilities Committee since January.

We are urging people to call the Children and Families Committee at (617) 722-2011 (for Rep. Kay Khan, House chair) and (617) 722-1673 (for Senator Sonia Chang-Diaz, Senate chair), and urge the committee to vote favorably on the bill.

Results broken down by provider and region

In our Public Records request to the DPPC last February, we asked for abuse data broken down by DDS providers from Fiscal Years 2010 to the present. Based on our analysis of that DPPC data, the chart above contains a summary of the providers leading in various measures of abuse in each of five regions of the state.

As reflected in the chart above, among our preliminary findings regarding the DPPC’s data from Fiscal 2010 to 2019 are the following:

  • Vinfen, Inc. had the highest total number of abuse complaints among all providers reviewed in all regions (561). This compares to an average among all of the providers reviewed of 116 complaints.
  • Guidewire, Inc. had the highest number of complaints substantiated (46). This compares to an average among all providers of 8.
  • The Judge Rotenberg Center had the highest number of complaints referred for criminal investigation (80) and the highest percentage of total complaints referred for criminal investigation in a single region (31.82%).
  • The Judge Rotenberg Center led in two separate regions in total complaints or highest percentage of complaints referred for criminal investigation.

The Judge Rotenberg Center has long been a focus of controversy because of its practice of administering electric skin shocks to program clients as a behavior modification technique.

  • The May Institute led in two regions in most complaints substantiated or highest percent substantiated.
  • Community Resources for Justice led in one region in total complaints, total substantiated, and highest number referred for criminal prosecution, and in a second region in highest percent substantiated.

Need for investigation

We’ve sent our findings to the Attorney General’s Office, and intend to provide them to the Inspector General’s Bureau of Program Integrity when we meet with them this week.

We’ve long called for a comprehensive investigation of the DDS corporate provider-based system, which costs the state $1.2 billion per year and involves the operation of more than 1,800 group homes.

While the IG’s Bureau of Program Integrity found in 2017 and 2018 that there were financial irregularities in the state’s much smaller network of some 200 state-operated group homes, the Bureau has so far not issued any similar reports on the privatized provider system. In fact, there has been no systematic investigation, as far as we know, of the provider system in Massachusetts since the 1990s.

In 1997, the Legislature’s House Post Audit and Oversight Committee found problems of abuse, neglect, and financial irregularities throughout the DDS system. The Post Audit report stated that DDS’s oversight of privatized care, in particular, raised “grave doubts about (DDS’s) commitment to basic health and safety issues and ensuring that community placements provide equal or better care for (DDS) clients.”

Some caveats on the DPPC data

Our analysis has involved taking the raw data in each file from the DPPC, sorting that data by provider, and counting the total number of complaints for each provider that appeared to have more than a minimal number of complaints. We also counted the number of complaints substantiated and referred for criminal investigation over the time period for each provider, and then calculated the percentages for each provider of total complaints substantiated and referred. The high numbers in each category are highlighted on the linked spreadsheet.

We would note that many abuse complaints are referred by the DPPC to district attorneys that are screened out for investigation by the DPPC itself because they don’t fall under the DPPC’s statutory jurisdiction. As a result, the number of referrals to the DA’s are often higher than the number of complaints substantiated by either the DPPC or DDS.

One other caveat about this data is that the DPPC has acknowledged to us that the numbers of complaints, substantiations, and referrals in its data refer to intake calls that the DPPC receives regarding abuse. There may be multiple intake calls for each actual occurrence of abuse. So the DPPC numbers may inflate the actual number of cases or occurrences of abuse that the agency investigates or refers for investigation. However, that potential inflation in the numbers shouldn’t affect the relative percentages regarding providers in the data.

DDS launches ‘licensing review’ following allegations of poor care in provider’s group homes

August 12, 2019 15 comments

The Department of Developmental Services is conducting a “special licensing and program integrity review” in response to allegations of poor care in group homes operated by a provider licensed by the Department.

In an August 8 statement provided to COFAR, DDS Commissioner Jane Ryder also said that DDS is investigating the allegations and is requiring the Springfield-based provider, the Center for Human Development (CHD), to implement a corrective action plan. The Department has also conducted unannounced visits to the residences, Ryder stated.

“DDS takes the health and safety of individuals it serves very seriously, and is conducting a thorough investigation into the allegations,” Ryder added.

Ryder’s statement was provided nearly a month after COFAR asked for comment from her regarding a series of allegations raised by Mary Phaneuf, the foster mother of Timothy Cheeks, a 41-year-old resident of a CHD group home in East Longmeadow.

Last year, Phaneuf began raising concerns with CHD and DDS about Tim’s care, including a lack of proper medical care for Tim and no documented visits to a primary care physician or dentist for seven years. Phaneuf also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Last week, CHD acknowledged the missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences. Those problems include an alleged failure to ensure that Tim was receiving Social Security benefits for at least two years, and the alleged diversion of food stamp benefits from Tim and at least one other client.

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the DDS website did not mention those or similar problems in CHD’s group homes. It was not clear whether the DDS special licensing and program integrity review is intended to examine whether the DDS licensure process fell short in the CHD case.

The 2017 DDS licensure report for CHD did not appear to note any serious issues with medical care in the CHD’s residential facilities except to state that medical plans for two residents “did not fully address all required elements.”  The report stated that “the vast majority of individuals in the survey sample were supported to receive timely annual physical and dental examinations, attend appointments with specialists, and receive preventive screenings as recommended by their physicians.”

In our July 9 email to Ryder, we asked “whether it is possible that the DDS licensure process is not sufficiently comprehensive or thorough to identify issues such as the ones cited (in the CHD case).”

COFAR also asked Ryder in that email whether DDS reviews abuse or other complaints or investigative reports as part of its provider licensure process. Ryder’s August 8 statement did not respond to either of those questions.

COFAR has called for a comprehensive investigation of the privatized DDS system, and has reached out the the Attorney General’s Office and to state policy makers and legislators for support for that. The Springfield Republican, which reported on Tim’s case last week, noted that Attorney General Maura Healey’s office recently met with COFAR, and quoted a spokesperson for Healey as saying they “are learning more about the issues they (COFAR) raised.”

The Republican  included a statement from James Goodwin, CHD president and CEO, apologizing for the issues raised by Phaneuf.

“The quality of our services — the care and support that CHD and Meadows Homes provide to our clients — is our most important value, and in these cases we have failed in not upholding that value,” Goodwin told the newspaper. “We apologize for these failures. We are committed to making the changes needed to regain the trust of our clients and families at Meadows Homes, and to continue to support their health and wellbeing.”

In a statement previously provided to COFAR, Goodwin listed a number of corrective actions that he said CHD has taken since January, including cataloging all medical visits in a database, tracking communication between guardians and caregivers, requiring more rigorous supervision of program leaders, and developing a system to automatically inform family members and guardians of medical appointments and their outcomes.

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