Continuing drop in number of residents threatens continued existence of DDS state-run facilities

January 26, 2023 8 comments

New data that COFAR has received from the Department of Developmental Services (DDS) shows the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2022.

The data, which was provided by DDS last week under a Public Records Law request, shows that as of Fiscal Year 2022, the census at the Wrentham Center was 182, down from a high of 323 in Fiscal 2013 — a 44% drop.  The census at Hogan was down to 95 in 2022, from a high of 159 in 2011. That is a drop of 40%.

Previous data from DDS showed that the total census in the state-operated group homes declined from a high of 1,206 in Fiscal 2015, to 1,097 in 2021 — a 9% drop.

Meanwhile, the census in the state’s much larger network of privatized group homes has continued to climb, rising from 6,677 to 8,290 between 2008 and 2021 — a 24% increase. (See the graphs below.)

Hogan now has well under 100 residents remaining, and Wrentham is well under 200. Since August 2021, DDS has closed seven state-operated group homes and subsequently reopened one.

But more troubling than those closures is the fact that DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. Last fall, we wrote about a rare admission to the Wrentham Center, but that appears to have been the exception. We have heard from several people who have been unsuccessful in seeking placements for their loved ones in either ICFs or state-operated group homes.

That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICF’s, in particular, will eventually be closed.

 

Source: DDS

DDS says it has no records on plans to close Wrentham or Hogan

Despite the continuing downward trend in the census at Wrentham and Hogan, DDS said in response last week to our Public Records request that they have no records concerning projections or plans to close those facilities. We have appealed that response to the state supervisor of public records, arguing that the Department did not indicate that it had done a search for such internal plans or projections.

Given the declining census at both Hogan and Wrentham, we believe it is unlikely that there are no departmental emails or other records at least discussing the possibility that these facilities will eventually close.

ICFs and state-operated group homes are vital backstops for care

State-run residential facilities are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.

The ever-expanding network of group homes in Massachusetts that are run by corporate providers that contract with DDS have become bottom-line operations that meet minimal standards for direct-care pay and training. Abuse and neglect are rampant problems in the group home system. Meanwhile, the executives running these provider organizations have seen their salaries skyrocket in recent years.

As funding for the ICFs and state-operated group homes has declined or remained stagnant respectively over the past decade, funding for the corporate-run group home system has grown steadily to over $1.4 billion today.

Allowing the state-run network of care in Massachusetts to wither and die through underfunding and attrition will lead to a catastrophic decline in the level of care and services for some of our most vulnerable residents.

Seven years after the closure of his sheltered workshop, Mark Garrity is still waiting for something to replace it

January 12, 2023 4 comments

It has always been his work that has motivated Mark Garrity, his sister Patty says.

When he participated in his sheltered workshop, Mark was productive and social. He derived meaning from the tasks he was given, and he had fun with his friends.

Mark, 52, who has an intellectual disability, doesn’t need or care about being paid a minimum wage for it, Patty says. What is important to him is completing an assigned task.

“If Mark sees a pen without a cap, he’ll put it on with a twist and be proud of it,” Patty says.

But since 2016, when all remaining sheltered workshops were closed in Massachusetts, Mark has faced a void as far as work is concerned.

Mark Garrity (lower right) at a fundraiser for Road to Responsibility with his mother Helen (lower left). In upper row is Mark’s sister Marybeth Garrity (left), his sister Patty Garrity, and John Gregory, a staff member at the time in Mark’s group home.

Mark’s community-based day program is run by the Road to Responsibility (RTR), a provider to the Department of Developmental Services (DDS). The day program offers a cooking class in the kitchen, but that doesn’t interest Mark.

“He just stays in one room where he eats lunch,” Patty says. “When they took away his workshop, they took away his meaning. He’s not like you and me.”

Can’t function in the community

In his sheltered workshop, Mark packaged and assembled things such as car door locks. He took pride in that work.

The purpose in closing the workshops, according to the successive administrations of then Governors Deval Patrick and Charlie Baker, was to place people with intellectual and developmental disabilities in mainstream or integrated work settings that pay at least minimum wage. But Patty says that approach doesn’t work for Mark.

“He can’t produce at the minimum wage level,” she said. And now with the minimum wage in Massachusetts having risen to $15 an hour, she says, it would be even more difficult to find a suitable job for Mark in the community.

Moreover, if Mark were to go off-site and into the community to work, he would need 1-to-1 staffing assistance, Patty said. His day program doesn’t have sufficient staffing for that.

A few years ago, Patty proposed to Mark’s day program staff that the clients be given objects to pack into gift bags that the clients could then deliver to homeless shelters. She said she was told, though, that the program didn’t have the funds to purchase the gift bag items.

“Now his work is long gone,” she said, “and we continue to wait, and nothing is showing up.”

Federal and state lawmakers need to be informed about the value of work activities

We need to let our state legislators and members of Congress know about the lack of meaningful work activities in day programs, which is not unique to Mark’s program.

In the just-ended session of Congress, every member of the Massachusetts delegation, with the exception of U.S. Rep. Richard Neal, co-sponsored legislation (H.R. 603 and S.53), which would eliminate remaining sheltered workshops throughout the country and require that all clients be paid minimum wages in “integrated” work settings. Fortunately, the bills were not approved in that session, but the legislation will no doubt be reintroduced.

You can find your members of Congress here and state legislators here. Please let them know that if they support the elimination of sheltered workshops, they need to find ways to replace the work the shelters provided, particularly for those persons who can’t function in the community.

Sheltered workshop closures left thousands with little to do

All sheltered workshop programs were closed in Massachusetts as of 2016 after the federal Department of Justice had stated two years earlier that developmentally disabled people should work in integrated employment settings in which a majority of the workers are not disabled.

But while sheltered workshops have been deemed “segregated” settings because they are offered solely to groups of developmentally disabled persons, many clients and their families and guardians argued that the programs provided fulfilling, skill-building activities and did not preclude community integration.

Ever since the closures of the workshops, thousands of DDS clients have been transferred to day programs with little or nothing to replace the work opportunities they previously had.

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

Neurologist said sheltered workshop was important for Mark

While Mark has had an intellectual disability since birth, his cognitive functioning was further impaired when he suffered a traumatic brain injury after being hit by a car in 1995. In a letter written before Mark’s sheltered workshop program was ended, his neurologist, Dr. Douglas Katz, a member of the Department of Neurology at Boston Medical Center, stated in that Mark began a long course of rehabilitation after the accident, and that his sheltered workshop activities were an important part of that rehabilitation effort.

Katz added that, “I understand this (sheltered workshop program is …likely to close… I think this would be a big loss for my patient Mark. I would support efforts to maintain this structured workshop for Mark and others that benefit from this service.”

Day program found a partial solution

In some cases, day programs have tried to find ad hoc solutions to the lack of available work activities. After COFAR contacted DDS about Mark’s situation in early 2017, RTR staff found a paper shredding activity for Mark to do at the day program site. The activity received verbal approval from the DDS southeast regional director, who determined that it was in compliance with federal regulations.

The paper shredding seemed at first to be a good solution for Mark. But Patty said that Mark soon sensed a lack of structure and purpose in the activity and became bored with it.

In 2016, we first urged state legislators to recognize that like Mark, not every DDS client is capable of or desires to participate in the mainstream workforce.

In 2019, we asked those lawmakers to support H.88, a bill which would have required that meaningful work activities be provided in DDS community-based day programs. But the language in the bill was subsequently removed by the Children, Families, and Persons with Deisabilities Committee and replaced with language establishing a Permanent Commission on the Status of Persons with Disabilities.

Day program staffing shortages have made problems worse

Day programs around the state are currently struggling with staffing shortages, which have made it even more difficult for them to provide meaningful activities to clients.

Mark’s day program is no exception. Mark, who stayed home from the program during the height of the COVID pandemic in 2020, is now back attending the program only one day per week due to the insufficient staffing.

Mark is still doing the paper shredding activity there, Patty says. But for most of the four-hours he spends at the day program site, “he’s mostly a spectator,” she said.

Patty herself takes Mark out of his group home on Mondays for coffee and errands. On Tuesdays and Thursdays, she takes him to the YMCA where he works with a personal trainer. On Wednesdays, after his day program ends, Patty takes him to a weekly bowling program.  And on Fridays, Saturdays, and Sundays, she takes him out for coffee and to visit friends.

“As far as the community goes, Mark has a very balanced life,” she said. “It’s his work piece that is missing.”

Patty is planning to introduce Mark to her local legislators. She thinks that may help them to understand “what Mark can and cannot do.”

“I sometimes feel defeated,” Patty said, “I but will never give up the fight for Mark. “He’s capable of so much more, but the system needs to respond.”

Update: Problematic SDM bill dies at end of legislative session

January 5, 2023 4 comments

A problematic bill that would have authorized Supported Decision Making (SDM) as a substitute for guardianships of persons with intellectual and developmental disabilities (I/DD), died at the end of the just-completed two-year session of the state Legislature on Tuesday.

The bill (S. 3132) had passed the Senate in November and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to a remaining “informal” session of the House where it could have been approved on a voice vote, without debate.

As we noted in our previous post, the bill lacked provisions to protect the rights of persons with I/DD and their families and guardians. Last month, we urged the staff of the Ways and Means Committee not to send the bill to the House for final passage.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” will most likely be reintroduced in the new two-year legislative session, which began yesterday (Wednesday). Unfortunately, our guess is that the proponents of SDM will file the same piece of legislation that they have filed several times previously without including our suggestions to improve the bill.

Under the bill, SDM “supporters” would help individuals with I/DD make key life decisions, including decisions about their care and finances. Most people with I/DD currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.

In our view, however, a key piece missing from the SDM legislation so far has been a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.

The SDM legislation assigns the role of the “decision maker” to the person with I/DD. The SDM bills submitted each legislative term thus far have drawn no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD. As a result, we think the legislation presents a potential for financial exploitation of persons with I/DD.

In that regard, we pointed out to the committee that the bill needed a provision prohibiting providers from being involved as SDM “supporters” in helping individuals make “decisions” about services the providers offer.

As we noted, we think SDM is a concept that needs to go back to the drawing board. We would be happy to work this time around with legislators and SDM supporters in drafting a bill that contains the safeguards we’ve noted here and in our previous post.

SDM bill close to passage in Legislature, yet still lacks safeguards to protect individual and family rights

December 29, 2022 16 comments

Legislation to establish Supported Decision Making (SDM) for persons with intellectual and developmental disabilities (I/DD) in Massachusetts has gotten close to final passage in the state Legislature.

But, as we’ve said about similar bills in the past, the current bill (S. 3132) lacks safeguards to protect the rights of individuals in the Department of Developmental Services (DDS) system and the rights of their family members and guardians.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” passed the Senate in November, and is now in the House Ways and Means Committee. We have urged key legislators not to pass this bill during the remaining “informal” House session in which the bill would not even require debate or a recorded vote by individual members.

Under the legislation, the SDM supporters would help individuals with intellectual and developmental disabilities (I/DD) make key life decisions, including decisions about their care and finances. Most people with I/DD are currently under guardianship. But SDM proponents maintain that guardianship unduly restricts their right to make those decisions.

In our view, however, the bill continues to lack safeguards to protect individuals with I/DD from potential financial exploitation, and to prevent the marginalization of their family members in SDM arrangements. A key piece missing from the bill is a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.

We recently informed the House Ways and Means staff that a Syracuse Law Review article published earlier this year about SDM pilot projects in Massachusetts identifies, or at least implies, a number of problems or difficulties associated with SDM that are not addressed in the bill.

The lead author of the law review article is Cathy Costanzo, executive director of the Center for Public Representation (CPR), a Massachusetts-based nonprofit law firm that is one of SDM’s major supporters. The article is highly supportive of SDM as an alternative or replacement for guardianship. But among the issues or problems with SDM that the article raises or implies are the following:

Lack of a standard for decision-making ability

The law review article is not specific about the levels of I/DD among the SDM pilot project participants. It states that in a CPR-sponsored pilot project in Massachusetts, there were eight participants who “represented a cross-section of people with varying support needs and from a range of demographics.”

The article doesn’t say, however, whether any of these participants were non-verbal, for instance, or whether they were all capable of understanding the decisions they were making under the SDM model. Our concern has to do with the fact that SDM assigns the role of the “decision maker” to the person with I/DD. Neither the article nor S.3132 discuss whether there is a level of ID below which it is not possible for the participant to appreciate or understand the decisions they are supposedly making.

We hope legislators understand that there is a wide range among levels of intellectual disability (ID), and that those levels have different impacts on an individual’s ability to make decisions. For instance, as described by the American Psychiatric Association (APA), persons with severe and profound levels of ID have IQ levels of 35 or below. The average IQ score is 100.

According to the APA, persons with severe ID comprise about 3 to 4% of the total ID population. The APA notes that for those people, “communication skills are very basic,” and “self-care activities require daily assistance.”

Profound ID applies to 1 to 2% of the ID population who have IQs below 20. Those persons are “dependent upon others for all aspects of daily care, and “communication skills are quite limited.”

For people in those categories, we think the potential for informed decision making about key life decisions, even with support from others, is very low if not non-existent. Yet, S. 3132 makes no allowance for that. The bill draws no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD.

As a Penn State Law Review article about SDM states:

…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes.

Given the diminished decision making capacity among persons with severe and profound levels of ID, we think those people are especially vulnerable to financial exploitation from persons on their support teams who may “help” them make financial decisions that don’t reflect their wishes. See our discussion below about the potential conflict of interest faced by support team members who are also employees of corporate providers that provide services to the disabled individuals.

In these situations, family members of persons with I/DD, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who stand to benefit financially from the clients’ “decisions.”

We think there is a greater potential for SDM to work effectively for people with what the APA describes as mild levels of ID.  Mild ID, which comprises an IQ range of 50 to 70, includes about 85 percent of people with intellectual disabilities.

According to the APA, people with mild ID “are mostly self-sufficient with sufficient supports.” Those supports, the APA says, “might include assistance with life decisions.” So, it makes sense to assume that people with mild ID are capable of participating in a team discussion that would result in a decision of that magnitude.

A potentially more problematic group in terms of decision making ability are those persons with what the APA labels as moderate intellectual disability. People in this group, who have IQs ranging from 36 to 49, comprise about 10% of the ID population.

According to the APA, people with moderate ID need support for making “social decisions (particularly romantic decisions).” Independent living may be achieved for this group “with moderate supports such as those available in group homes.”

Once again, S. 3132 doesn’t make distinctions between any of these levels of ID. The bill assumes that all persons with I/DD, no matter how low their level of cognition is, are capable of making complex life decisions.

Conflicts of interest in SDM support teams

As previously noted, members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide. The Syracuse Law Review article states that in the Massachusetts pilot project:

…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).

There is, however, no such restriction in S.3132 against providers being involved in decision-making regarding services they provide. We think the SDM legislation needs such a provision.

Need for public funding

The Syracuse Law Review article stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”

There is no reference in S.3132, however, to a potential funding mechanism for SDM in Massachusetts.  At the same time, the law review article states that providing public funding for SDM could introduce other problems into the model by turning it into a paid service.

Lack of a dispute resolution process

The Syracuse Law Review article recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.”  While S.3132 requires EOHHS to establish an SDM training program in Massachusetts, it doesn’t specify that the program should include training in dispute resolution.

In our experience, many disputes in the care of persons with I/DD occur between family members or guardians, on one hand, and DDS and providers, on the other. In other words, DDS tends to support the providers’ positions in these matters, and family members and guardians are often left in an isolated position. What may be needed is an independent mediation process for disputes that places family members on a level playing field with the other parties when disputes arise.

It’s interesting that many of our major concerns about SDM are either discussed or implied in the Syracuse Law Review article, which was written by major SDM proponents. The Legislature has yet to come up with a bill that addresses these problems. SDM is a concept that needs to go back to the drawing board in the coming legislative session.

DDS placing client in a ‘Catch-22’ position to force her to leave her shared living caregiver

December 13, 2022 8 comments

The Department of Developmental Services is arguing in a legal brief that Mercy Mezzanotti, a departmental client, should be disenrolled from a program that provides her with shared living services unless she agrees to move away from her long-time caregiver, Karen Faiola.

But Mercy maintains that she wants to stay with Karen with whom she and her therapist say she has thrived emotionally over the past four years.

In May, Karen’s previous payment agency, Venture Community Services, suddenly canceled her shared living contract without stating a reason in its termination notice. As a result of the contract termination, DDS maintains in the legal brief that Karen is no longer a “qualified shared living provider.”

The DDS brief further argues that because Mercy has refused to move in with a new caregiver, she has “voluntarily declined” shared living services and should be disenrolled from the program.

For reasons that DDS has not revealed publicly, the Department has declined to refer Karen to a new shared living payment agency. DDS does not contract directly with shared living caregivers, but does refer them to shared living payment agencies such as Venture. Were DDS to refer Karen to a new agency, Karen would presumably become a qualfied caregiver once again.

Karen Faiola and Mercy Mezzanotti

Karen and Mercy both maintain that Karen’s contract was terminated after both of them accused Venture employees of emotionally abusing Mercy. They claim DDS is siding with Venture in the matter, and that the Department has refused to fully investigate their charges.

Because DDS has declined to refer Karen to a new corporate payment agency, Karen has not been paid since May for caring for Mercy even though Mercy has continued to reside in her home. In Karen’s and Mercy’s view, DDS’s legal argument has placed both of them in impossible, Catch-22 positions in order to deny what Mercy has expressly stated what she wants – services from Karen.

Mercy’s appeal of DDS’s disenrollment notice is now before a state hearing officer who held a hearing on it last month. By way of disclosure, I attended the November 10 hearing via Zoom and testified in support of Mercy and Karen. I agreed, at the request of hearing officer and Erin Brown, a DDS assistant general counsel, not to publish details of the actual hearing on this blogsite until the hearing officer renders her decision, which is expected sometime later this month.

As a result of that agreement, I am confining this post to a discussion of the legal brief filed by Brown with the hearing officer on December 7, after the hearing concluded. In her brief, Brown laid out the Department’s argument for disenrolling Mercy from services under the Home and Community Based Services (HCBS) federal waiver program.

In May, as we also reported, Venture employees removed Mercy, against her will, from Karen’s home and placed her for two days in the home of another caregiver whom she didn’t know. After objecting to the move, Mercy was able to return to Karen’s home. We have joined Mercy and Karen in asking the Disabled Persons Protection Commission (DPPC) to fully investigate both the removal of Mercy from Karen’s home and allegations made by Mercy that she had been previously emotionally abused by Venture employees.

Catch-22 positions for Mercy and Karen

The key point Brown makes in her brief is that Mercy became ineligible for the HCBS Waiver, which supports shared living, when Mercy came back to live with Karen after her involuntary removal from Karen’s home. Brown’s brief stated that Mercy:

…voluntarily declined shared living supports from a Qualified Provider, and instead choose to live with Ms. Faiola (Karen). This choice, which is her right, resulted in (Mercy) being ineligible for the (HCBS) Waiver because she was not receiving a Waiver program service: Ms. Faiola is not a qualified and licensed provider, nor is Ms. Faiola employed by a Qualified Provider to provide Waiver services.” (my emphasis)

However, as noted above, the reason Karen is not employed by a Qualified Provider is that Venture terminated her contract without stating a cause, and DDS will not refer her to a new Qualified Provider.

Also, while Brown stated that Karen herself is not a licensed or qualified shared living provider, Brown later stated in the same brief that in this case, the licensed and qualified provider was Venture, a DDS-funded corporate agency, that contracts directly with shared living caregivers. Shared living caregivers themselves, such as Karen, are not licensed by DDS.

DDS says psychotherapist’s testimony that Mercy has reportedly thrived under Karen’s care was irrelevant

In her brief, Brown acknowledged that Grishelda Hogan, an outpatient psychotherapist, who has treated Mercy since  2018, testified during the hearing that she has “not had any concerns about (Mercy) in the care of Ms. Faiola.”

As we reported, Hogan actually sent a written statement to the hearing officer prior to the hearing in which she stated that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“

Brown stated in her brief, however, that “the entirety of Ms. Hogan’s testimony was irrelevant. She did not testify about the (HCBS) Waiver or Waiver rules. There were no clinical matters at issue in the fair hearing, nor was Ms. Hogan qualified as an expert to speak on clinical matters.”

It appears that Brown is admitting in her brief that Mercy’s emotional state, and her wishes, are irrelevant to DDS. Also, Hogan is a psychotherapist who has worked with Mercy for four years. Brown’s brief offers no reason why she would not be qualified to speak on clinical matters.

Brown similarly contended in her brief that testimony by Mercy’s sister Tami Baxter that Mercy was doing well in Karen’s care was irrelevant. And Brown maintained that Karen’s testimony that DDS has refused to refer her to another qualified provider was “outside the scope of the fair hearing and irrelevant.”

In our view, Karen’s employment relationship with Venture is of central relevance to the case. Venture’s termination of the contract with Karen is the basis of DDS’s argument that Mercy is not receiving services from a Qualified Provider.

As I noted in a written statement that I sent on November 17 to the hearing officer, Mercy had been in several shared living arrangements before she met Karen that were not successful and that left her in a depressed and dysfunctional emotional state. We think placing Mercy with a different shared living provider than Karen would risk a return to the unsuccessful placements of the past for her and would risk undoing the emotional and psychological progress she has made with Karen. Those are risks that we think may be quite high.

We are urging the hearing officer to decide in favor of Mercy Mezzanotti’s appeal to retain her eligibility for services from DDS.

We are also requesting that the hearing officer either order or advise DDS to refer Karen to a new payment agency in order to allow Mercy to continue to receive shared living services from her.

Mother says daughter’s health has declined at day program where she has few meaningful activities

December 8, 2022 3 comments

At her day program in the Liberty Tree Mall in Danvers, Mia Cappuccio spends lots of time either walking around the mall with other clients, isolated from the community, or engaging in computer games and a handful of other repetitive and mundane activities, according to her mother Jeanne.

Jeanne said Mia has told her she has asked many times to participate in job training and internships at Parcels, a boutique in the mall. Parcels is run by the Northeast Arc, a corporate provider to the Department of Developmental Services (DDS). Northeast Arc runs both Mia’s day program and her group home.

According to Jeanne, Mia says the day program director repeatedly responds to her requests to work at Parcels by saying she will “‘look into it,'” but nothing ever comes of it.

Since Mia began attending the day program in October 2021, the staff have allowed her, over Jeanne’s objections, to buy candy and lemonade at the Five Below store there. Jeanne thinks the combination of Mia’s sugar intake and lack of exercise at the day program may have contributed to her development of diabetes, which was diagnosed in October.

Yet, Jeanne says, neither Northeast Arc nor DDS, which funds the provider agency, appear to recognize the problem.

Jeanne said she has requested that the day program staff help Mia to make better food choices, and provide Mia with activities other than making purchases in mall stores. But, she said, the day program management have responded that while they encourage Mia to make good choices, it is Mia’s “human right” to buy what she wants.

Jeanne said the day program management suggested that the solution to the problem is to take Mia’s debit card away from her or to suspend her participation in the program altogether. Jeanne maintains that neither of those suggestions are constructive because neither would provide Mia with cues for appropriate behaviors or with usable skills.

Mia and Jeanne Cappuccio

Mia’s day program is called STEP ( Skills Training Exploration Program), and is described on the Northeast Arc website as helping participants “build work and life skills.” But, Jeanne said, little or no such skill-or-work-related training is being provided to Mia in the program.

Mia, who is 26, has a moderate intellectual disability. She has lived in three group homes run by three different DDS providers; but Jeanne said that none of those settings have met her needs as required by DDS regulations.

We are hearing more and more from families and guardians that the COVID pandemic hastened a decline in overall care and services in the DDS community-based system. The decline has been marked by an ongoing staffing shortage. But Jeanne maintains the staffing shortage doesn’t fully explain the lack of meaningful activities provided by Mia’s day program.

Jeanne said Northeast Arc frequently extols its programs on social media and in podcasts. Recently, a Northeast Arc executive contended on a corporate podcast that the organization has helped more people with disabilities secure employment during the pandemic than in any previous year. “As I listen or read these things, I wonder – who does this apply to? Why isn’t this Mia’s reality?” Jeanne wrote to us.

Declining health

Jeanne said Mia’s mental and physical health have declined in the past several months. In addition to diabetes, Mia was diagnosed earlier this year with metabolic syndrome, a condition that can increase the risk of heart disease and stroke. She also developed fatty liver disease a year ago as well as narcolepsy.

Jeanne said Northeast Arc recently developed a behavior plan to address these issues; but she termed the plan “weak,” and said the staff are “woefully undertrained.” Also, she said, the plan has been implemented in Mia’s group home, but not at her day program.

Seeking self-directed model and requesting a change in placement 

Earlier this year, Jeanne asked DDS officials whether the Department’s “self-directed services” model might work better for Mia than the traditional model of care under which DDS directly funds corporate providers to provide residential and day program services. Although DDS has been operating self-directed services programs since the late 1990s, the state Legislature authorized a major expansion of those programs in 2014 with passage of the “Real Lives” law.

Jeanne said provider and DDS officials met with her to discuss her self-directed services proposal, and recommended for the first time last month that she explore a shared-living arrangement for Mia. Jeanne said they told her the self-directed model could be made to work with shared-living services.

Jeanne said she and her husband Tom have agreed to explore the shared-living model, although she said Mia has said she would like to remain in a group home. Under the shared-living proposal, Mia would live in a home near her parents. A shared-living setting is run by an individual provider.

Jeanne said she and Tom also asked to explore another group home placement for Mia, particularly one that is state-operated. As we have reported, staff in state-run group homes and Intermediate Care Facilities in Massachusetts are better paid and better trained than their counterparts in the corporate provider-run group home system.

Jeanne said the response from DDS, though, has been that they typically refer only medically complex and highly clinically or behaviorally challenged individuals to state-operated facilities, and that those settings would not be an appropriate peer match for Mia. She added that DDS has also claimed residential placements are scarce, and there are no other residential placements in the Cappuccios’ community.

We disagree that state-operated placements are only appropriate for a restricted set of clients. In any case, it appears that Mia’s medical needs have become more acute in the past year.

Lack of exercise and concern over diet

Jeanne said that in August, when Mia’s gastroenterologist diagnosed Mia with fatty liver disease, he recommended a half-hour-a-day exercise program for her, five days a week, and a low fat diet.

To date, Jeanne said, Mia has no regular exercise program either at her day program or in her group home. She said staff maintain that they encourage Mia to exercise and eat healthy foods, but that they contend she is a picky eater and she refuses exercise.

In September, with Mia’s health issues unaddressed, a sleep specialist at Mass Eye and Ear determined that Mia was experiencing excessive daytime sleepiness and that she might have narcolepsy, Jeanne said. In late October, her primary care doctor stated that Mia’s condition had shifted from prediabetic to diabetic. The doctor’s notes stated that Mia’s group home was working on diet and exercise programs for her; but Jeanne said the group home has not been doing that. 

Based on email correspondence between Jeanne and the day program staff, it doesn’t appear the staff have recognized the extent of Mia’s concerns. On November 4, a day program manager emailed Jeanne to say that Mia “has made a lot of progress and is doing really well. Mia has expressed on several occasions that she enjoys being in program and the activities that we provide.”

There was no acknowledgement in the program manager’s email of Mia’s health problems.

Three days later, Jeanne emailed the day program manager to say that medical lab results over the previous year had iindicated that there might be a correlation between Mia’s development of diabetes and her participation in the day program. In that email, Jeanne wrote that:

Mia has been purchasing candy, cookies and a liter of lemonade frequently at her day program. She has been experiencing fatigue and falling asleep often. It has been a vicious, unhealthy cycle. She needs support to manage her health, rather than her social behavior.

That same day, November 7, Jeanne brought the group home and day program situation to the attention of Kelly Lawless, the DDS northeast regional director. She wrote:

Direct care staff members have been quick to respond to correspondence and they appear to have good intentions.  However, her programming has not met Mia’s needs and has resulted in a decline in her health and wellness. Her programming has substantially contributed to her development of metabolic syndrome, including diabetes.

Northeast Arc official contends the day program provides activites and exercise

In an email on November 21 to both DDS Commissioner Jane Ryder and to Northeast Arc CEO Jo An Simons, I asked for a response to Jeanne’s concerns about Mia’s day program and her request for a new placement for her.

Timothy Brown, chief innovation and strategy officer at Northeast Arc, responded with an email, stating that Mia had started in a class at her day program called “Health Matters,” and that she had “consistently made healthy eating choices” due to the class, and had not purchased any candy since her diabetes diagnosis.

Brown also contended that Mia has participated in “structured classes and programming that focus on employment goals and is exploring specific internship opportunities that were identified during these classes where she expressed career interests.” He didn’t identify those goals, and didn’t respond to a follow-up email seeking specifics about the internship opportunities and classes.

Brown also maintained that Mia has had “ample opportunities for physical exercise during the day.” He said those activities incude walking “alongside community members each morning prior to the mall opening”; day trip opportunities outside of the mall, and options during inclement wealther for Zumba and aerobics. He also said Mia attends the YMCA at least two times per week with her housemates, and uses an exercise bike on days she chooses not to go to the Y.

Exercise claims disputed

Jeanne, however, said in late November that she determined, based on Mia’s debit card transactions, that Mia has continued to go to pizza and barbeque wings restaurants in the mall at least once a week, and has continued to eat candy and sugary foods. She also said Mia told her that the instructor for the Health Matters class had been out for weeks and was out indefinitely. One of two of the provider’s care staff were taking turns running the class, she said.

Jeanne added that Mia told her the other activities in the day program primarily consist of computer games such as Jeopardy, Wheel of Fortune, and a game she has repeatedly played called Spent. A reviewer described Spent as a “harsh and often bleak” simulation of a situation in which the players are facing poverty and must figure out how to survive for 30 days on their last $1,000. “It is not appropriate or relevant and I don’t think it is intended to be played repetitively,” Jeanne told us.

Jeanne also said that, based on her review of the YMCA records, Mia has been to the Y 34 times in the past 11 months, which averages out to just over three times a month.

I have not received a response from Ryder to my November 21 email seeking her comment on the situation.

In our view, it is cases like this one that indicate whether a state agency such as DDS is effective in its management and oversight of its provider-run programs. When a provider can’t seem to recognize that a client in its care is experiencing severe health problems as a result of the policies and practices of that agency, the evidence begins to mount that the system is broken.

We would join with Jeanne in urging DDS to find a new and successful placement for Mia, preferably in a state-run facility. Given that Mia’s health is declining, DDS can’t afford to let the situation continue any longer.

Father writes about how he and his son finally broke free of the grip of Applied Behavior Analysis

November 25, 2022 2 comments

John Summers, a writer with whom we frequently correspond on disability issues, is a Cambridge parent who followed recommendations from doctors to seek Applied Behavior Analysis (ABA) services for his developmentally disabled son Misha.

ABA is the primary form of clinical treatment in Massachusetts and around the country for persons with developmental disabilities, and particularly for children with autism.

But in an essay he wrote for the Ideas section in this coming Sunday’s edition of The Boston Globe, Summers, who is a Research Fellow in History and Disability at New America, gives a compelling and moving account of how ABA failed his son, and how both of them finally broke free of it.

One of Summers’ key criticisms of the ABA system in Massachusetts and other states around the country stems from his finding that no state agency collects data on ABA. “It makes no sense,” he said in an email to us. “They are running a collective experiment on these children and not asking for any results. Given the state’s history with disability, that’s troubling.”

Summers wrote to us that MassHealth’s spending on ABA jumped 200% between 2017 and 2021. MassHealth began funding ABA services in 2017. In Fiscal Year 2021, he said, MassHealth spent $140.5 million on ABA services for 6,227 clients, for an average cost per child of $22,563.

“Yet,’ he wrote, “Massachusetts isn’t trying to find out what escalating public investment in this treatment is achieving, much less what harm it may be doing.”

We would be interested in hearing from our members as to their experiences with ABA for their loved ones in the DDS and special education systems. It’s possible that many clients have been helped by it. Summers says that for Misha, it was a futile ordeal.

Summers had placed his son, who is now 11, in ABA programs from the time Misha was just under two years old. Mishas was steered there, Summers said, by his Early Intervention program. Yet somehow, the years of treatment didn’t seem to be helping him.

ABA school attempted to quash essay

Summers said that Melmark New England, one of the ABA schools that he discusses in his Globe essay, hired Regan Communications, the powerful Boston public relations firm, to try to prevent the Globe from publishing his essay. Ultimately, Melmark was unsuccessful in stopping publication of the article.

“It was a revealing move,” Summers says, “that betrays a lack of compassion behind the smiling corporate face.”

ABA based on the theories of B.F. Skinner

A couple of years ago, Summers writes in his essay, he began doing research on ABA. He found that it stems from the behaviorist school of psychology, which was pioneered in the 1950s and 1960s by B.F.Skinner. Skinner engaged in what Summers describes as a “revolt against the traditional subject matter and methods of psychology.”

Summers notes that under the behaviorism model, “the inner life of motivation and sensation, will and judgment, thought and feeling” are disregarded because they can’t be measured. Those things lack what Skinner described as “the dimensions of physical science.”

As Summers put it, Misha’s behavior analysts “restricted themselves to observing his physical operations, devoid of subjective or personal meaning, so that they could be measured with the same tape, as it were.” In sessions that could last several hours a day, Misha’s behaviors deemed appropriate were rewarded by “reinforcers” such as gold stars. Negative reinforcers such as withholding attention were used for his behaviors that were deemed inappropriate.

But failing by the ABA measuring tapes to make expected progress in an ABA school in Cambridge, Misha was sent to a Melmark school in Andover. According to Summers, “Melmark clamped a vise grip around him.” In an observation room, “behind a one-way mirror, an ‘educational coordinator’ monitored his compliance with ‘appropriate social interactions’ in class.”

Still, none of it worked. The program wasn’t able to teach Misha how to brush his teeth, speak, or read at the level of children his age. Yet, the rigidity of the program’s methods frustrated Misha who engaged in bouts of crying and tearing out his hair there.

Summers had seen enough. In March, he enrolled Misha in the Perkins School for the Blind in Watertown, which agreed to “scrub every trace of ABA from his IEP (Individual Education Plan).”  Misha still can’t brush his teeth without help, but he is finally in a program that he enjoys and where he is given the freedom to have what Summers describes as an inner life.

Behaviorism largely debunked

Summers notes in his Globe essay that behaviorism is no longer an influential school in the field of psychology. One of the few areas it is still practiced is in the treatment of persons with developmental disabilities. In those school settings, autistic students are largely segregated from the rest of society.

It’s ironic because states such as Massachusetts, which rely on ABA, nevertheless subscribe to an ideology that congregate care for people with I/DD is universally bad because it segregates them from the wider community. Of course, that ideology leads to all kinds of contradictions, particularly the mistaken assertion that small group home settings are fully integrated into the community.

Private equity takeover of some ABA schools

Summers also told us that his research has revealed that because ABA schools have become so widely supported by government funding, the schools have increasingly become a focus of investment by private equity firms.

Summers said that of the total of 92 ABA schools certified by Early Intervention in Massachusetts, he found that at least five are owned by private equity companies. He said he asked the Massachusetts Department of Public Health (DPH), the lead administrative agency for Massachusetts Early Intervention programs, “whether they were concerned about this, but received no answer.”

Summers said the five ABA schools he found to be owned by private equity firms are Key Autism Services (owned by Cane Investment Partners); Butterfly Effects (Moran Capital Partners); Autism Spectrum Therapies / LEARN Behavioral (Gryphon Investors and PineBridge Investments); Behavioral Healthworks (TA Associates); and Mentor South Bay (Sevita).

As noted, we would welcome your comments about your experiences with ABA.

Baker administration does not appear to have projected the impact of higher state funding on direct-care wages

November 7, 2022 1 comment

(COFAR Intern Joseph Sziabowski contributed to the research for this post.)

On July 28, Governor Baker signed the Fiscal Year 2023 state budget, which, among other things, directed for the first time that hundreds of millions of dollars be spent to raise the wages of direct-care staff working for corporate human services providers.

But more than a quarter of the way through the fiscal year, questions remain about the legislation, including the amount by which those wages will be raised.

The budget provision appears to be a big win for thousands of caregivers in the Department of Developmental Services (DDS) system, whose low wages have resulted in staffing shortages that have reached critical levels. Up to that point, the administration and Legislature appeared to have done little to address the staffing crisis.

However, neither DDS nor the Executive Office of Health and Human Services (EOHHS) appear to have projected the level to which the average direct-care wage in Massachusetts will increase due to the budget legislation.

The legislation (line item 1599-6903 of Chapter 126 of the Acts of 2022), specifically requires that any corporate human services provider receiving state funding under a special provider reserve account direct at least 75% of that funding to compensation for direct-care and front-line staff.

The legislation appropriated $230 million for the provider reserve account for Fiscal 2023. The 75% funding provision would appear to require that a total of $173 million in the reserve account be directed by human services providers to boost direct-care wages.

The legislation, however, did not set a target wage for direct-care workers that providers would be expected to pay under the line item funding requirement. The budget line item, in fact, implies that the Legislature does not currently know what the wage distribution is for direct-care workers in Massachusetts.

In our view, it is problematic that despite appropriating hundreds of millions of dollars in funding to the providers, neither the administration nor the Legislature appear to have set a goal as far as wages of the providers’ direct-care workers are concerned.

COFAR has called for a target minimum wage of $25 per hour for those workers. The U.S. Bureau of Labor Statistics (BLS)  lists an average direct care wage of $16.80 throughout the country as of May 2021. (The BLS wage category is Social and Human Services Assistants in Residential Intellectual and Developmental Disabilities facilities.)

There is a difference of more than $8 per hour, or nearly 50%, between the average direct care wage in the nation and what COFAR has proposed for workers in Massachusetts. But whether our goal or something considerably less might be achieved by the budget legislation is apparently unknown.

It also isn’t clear that the increased funding will actually find its way to the direct-care workers and will not be diverted to the provider executives. In our October 12 email query to both EOHHS Secretary Marylou Sudders and DDS Commissioner Jane Ryder, we also asked if the administration had issued any guidance to providers regarding the payment of higher direct-care wages, and how the money would be audited and tracked. As noted, we have not received any answers to those questions.

Legislative staffer assumes there is no wage projection

In response to the questions above, which we also posed to the Legislature’s Children, Families, and Persons with Disabilities Committee, a committee staff member said she had been informed by EOHHS that the administration has “set benchmarks from which providers choose to pay their direct-care workers – so pay rate decisions on exceeding those rates are still up to providers for the privatized group homes.” The benchmarks appear to be the BLS average wages noted above.

The legislative staffer added that, “I take this to mean they (the administration) don’t have projections for a raise in wages, whether they will exceed the benchmark rates or not. They will at least have to be at the benchmark rates.”

In other words, the administration appears to be concerned only that current and future rates paid by providers to their direct-care workers in Massachusetts be comparable to the national average rates calculated by the BLS.

Legislature does not know direct-care wage distribution

The Legislature, in fact, does not appear to know what the current wage distribution is for direct-care workers in the state’s human services system.

The Fiscal 2023 budget line item states that EOHHS to provide the Ways and Means committees as of March 3 of next year with a comparison of the median wages earned by direct-care and other workers in Massachusetts with the 75th percentile wage estimate by the BLS.

What that seems to mean is that the Legislature would like to know whether direct-care workers in Massachusetts are in the upper quarter of the BLS wage range in the country. That still would not require EOHHS to project the likely impact of the requirement in the Fiscal 2023 budget that the providers spend 75% of their reserve fund revenues on raising those wages in Massachusetts.

Baker takes credit for increased funding to providers

On October 3, Governor Baker “touted” increases in funding his administration has provided to the corporate human services providers  — more than $800 million since 2015, according to The State House News Service. But in his remarks to the Massachusetts Providers’ Council, Baker apparently didn’t address the potential impact of the increases on direct-care wages.

In the same article, the News Service noted that, “The human services sector has struggled for years to attract and retain workers due to the combination of lackluster pay and the difficult nature of the work.”

The article didn’t question why a nearly billion-dollar increase in provider rates would not substantially raise the “lackluster pay” to the providers’ workers.

As we reported in August, much of that money appears to have gone to the providers’ executives. Between Fiscal Years 2012 and 2020, total compensation of CEOs, executive directors, and other DDS provider executives doing business in Massachusetts rose from $102.4 million to $125.5 million. That was a 23% increase.

Also, the average compensation paid per executive rose in that period from approximately $161,000 to $184,000 — a 14% increase.

As we have previously reported, both the state auditor and inspector general have found that increased state funding to the providers hasn’t necessarily translated into higher direct-care wages.

We are hopeful that this year will mark a meaningful increase in direct-care worker pay. But thus far, there has been no information as to what the actual impact of the increased funding will be on those wages.

Mother says ‘no’ to DDS offer to drop effort to remove her as son’s co-guardian if she relinquishes all decision making authority

October 27, 2022 26 comments

The Department of Developmental Services has offered to drop a two-year-long effort in probate court to remove Cindy Alemesis as co-guardian of her son Nick, whose life she saved in 2018.

But Cindy said that as part of a proposal made last week to settle the case, the Department stated that all medical and residential decision making authority concerning her son would be given to a new DDS-paid co-guardian.

In an interview, Cindy said she is encouraged that the Department is at least now open to her remaining as Nick’s co-guardian. However, she said, she will not accept an arrangement under which she would lose all medical and residential decision making authority in Nick’s care.

“I’m not handing that to them,” Cindy said. “I’ve fought for proper care for Nick and for his rights for his entire life.”

Nick and Cindy Alemesis

In 2018, Nick nearly died after staff in his group home in Dracut failed to take him for a scheduled ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

A few hours later, Cindy was the first to notice that Nick was ill, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that Nick had developed sepsis from it.

Nick spent eight months at Mass. General Hospital, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Despite Cindy’s actions in 2018, DDS petitioned the Middlesex County Probate Court for unspecified reasons in October 2020 to remove Cindy as Nick’s co-guardian.

 

Co-guardianship could still be “suspended” for vague reasons

The new DDS proposal last week to drop the effort to remove Cindy’s co-guardianship also includes a condition that her co-guardianship could still be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.” The proposal doesn’t explain who would make that determination or how it would be made.

The proposal further states that the DDS co-guardian would have to agree to “the dissemination of protected health information or other personal information about (Nick) with third parties uninvolved with (his) medical care.”

That condition sounds like an effort to prevent Cindy from providing information about Nick’s care or services to an organization such as COFAR. Presumably, if an incident such as a leaking shunt were to happen again to Nick, Cindy would be prohibited, under DDS’s proposed agreement, from saying anything publicly about the matter unless the DDS co-guardian were to allow it.

Cindy alleges poor care and decision making by DDS and provider

Cindy maintained that since Nick’s 2018 hospitalization, DDS and Nick’s residential provider, Incompass Human Services, continued to make poor decisions in providing medical care and services to him. She noted that DDS recently sent Nick back to a day program operated by Incompass, causing Nick to act aggressively and apparently injure himself.

Cindy said that in recent months, Nick was repeatedly injured in the group home, and was afraid of the staff there. The same thing then happened in the day program, she said, because many of the staff were the same.

Following those repeated injuries, Nick was moved out of the group home in September, and is currently living in a respite facility in Saugus.

Cindy said Nick’s former DDS-paid co-guardan, who had imposed a temporary ban this summer on Cindy’s visits and phone contact with Nick, has resigned. But Cindy said she isn’t hopeful the situation will improve with the appointment of a new DDS co-guardian.

The new DDS co-guardianship proposal contains the following stipulations:

  • Eva Toscano, who appears to be a program manager with the Department of Mental Health, would be appointed Nick’s new DDS-paid co-guardian. Toscano would have sole medical and residential decision making authority regarding Nick’s care.
  • Cindy would be informed beforehand of Toscano’s residential decisions “when feasible,” and would be informed beforehand of Toscano’s medical decisions unless there was an emergency.

It would appear that under this stipulaton, Nick could be moved from one residence to another without Cindy being informed in advance. In all cases, he could be moved without her consent.

  • Cindy would have to give 48 hours notice to residential staff prior to visiting her son.
  • Cindy would be allowed phone calls with Nick, but only if it were determined to be “not detrimental to (Nick’s) behavior.”

The proposal doesn’t specify who would make that determination as to whether the phone calls were detrimental, but it would appear to be up to the DDS co-guardian. Cindy says Nick has acted out in the past because he objects to a rule cutting off his conversations after 10 minutes.

  • Cindy could continue to take Nick to his church, which he has attended for the past 25 years, but the DDS co-guardian could cut off the visits if she decided they were “detrimental to (Nick’s) behavior or health.”

Cindy would not be allowed to make that determination whether attending church was detrimental to Nick.

Both Cindy and Nick’s pastor, the Reverend Keith Phemister, have stated that Nick has never caused problems in his church. Yet Cindy said Nick has been restricted for months by DDS and by providers from attending church services and functions, even online.

In an interview in April, Phemister sad Nick had not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”

  • Cindy’s co-guardianship could be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.”

It seems to us that stipulating that a guardian can no longer make residential or medical decisions or give out medical information about their ward essentially amounts to removing their guardianship. At the very least, DDS’s proposed resolution of this case would ensure continuing disputes between Cindy and the DDS co-guardian. We fully understand why Cindy does not want to accept a proposal like that.

In November 2021, Dr. Zaheer Ahmed, Nick’s primary care physician, wrote a letter to the probate court, opposing DDS’s bid to remove Cindy as Nick’s co-guardian.  In his letter, Ahmed maintained that Cindy had always acted in Nick’s best interest.

We agree with Dr. Ahmed, and believe Cindy should keep her medical and residential decision making authority.

COFAR asks for full investigation of removal of a client against her will from her shared-living home

October 18, 2022 6 comments

COFAR has asked a state agency to undertake a full investigation of the removal in May of a client of the Department of Developmental Services (DDS) from the home of a woman from whom she was receiving shared-living services.

The DDS client, Mercy Mezzanotti, said she was taken, against her will, from the home of Karen Faiola, on May 23 by an employee of Venture Community Services, a nonprofit contractor to DDS. Mercy and Karen allege the employee showed up at Karen’s home in Sutton and drove Mercy to the home of a family in Worcester whom Mercy didn’t know.

Mercy said she was kept in the Worcester residence for two days before Karen was able to locate her and return her to her home. She contends the experience caused her acute emotional distress. “I thought I would never see my home and Karen and my two cats that I love again,” she said.

Karen Faiola (left) and Mercy Mezzanotti

Mercy, 47, has a mild intellectual disability. But while she attended special needs classes in high school, her verbal skills were good enough for her to attend mainstream high school classes in English and to make the honor roll.

As her own guardian, Mercy has full legal authority to decide where to live, as well as to make other major life decisions.

In an email sent yesterday (October 17) to Nancy Alterio, executive director of the Disabled Persons Protection Commission (DPPC), we noted that an “Administrative Review” undertaken by DDS of the incident did not result in any findings about the appropriateness of Mercy’s removal from Karen’s home.

That incident and two other allegations of intimidation of Mercy were reported to DDS on May 26 by Karen, with whom Mercy has continued to live.

Under state regulations, DDS is required to report allegations of abuse to the DPPC, an independent state agency created to investigate “serious physical or emotional injuries” alleged to have been caused by caregivers to adults with disabilities in Massachusetts. However, due to a lack of resources, the DPPC refers the vast majority of abuse allegations it receives to DDS to investigate.

Both Mercy and Karen say they were not interviewed as part of the DDS review of Karen’s complaint.

Therapist corroborated claims of emotional injury

In a July 21 email to Mercy and Karen, Grishelda Hogan, Mercy’s therapist, stated that she had contacted DPPC to report the removal of Mercy from Karen’s home, and had relayed other concerns about Venture’s treatment of Mercy to DDS.

Hogan said that while Mercy was being kept in the Worcester family’s home, she “was reporting intense anxiety, difficulty sleeping, feeling sad and defeated, missing her home and her cat and her shared living monitor. She was reaching out to me consistently asking for help and advocacy to get home.”

DDS acknowledged, but did not assess allegations

In a Complaint Resolution Letter, dated September 30, in response to Karen’s complaint, DDS Area Director Denise Haley acknowledged that Karen had reported that Mercy had been removed from Karen’s home. Haley’s letter also stated that Karen had reported that a Venture job coach had previously threatened Mercy that she would be fired from her job, and that a second Venture employee had previously threatened to stop driving Mercy home from work.

The Complaint Resolution Letter stated that two Venture employees allegedly removed Mercy from Karen’s home on May 23, and brought her to the home of a “stranger.” The letter stated that Mercy “was very upset (at being removed from Karen’s home) and has been crying every day.”

However, Haley’s letter did not assess whether the alleged actions of the Venture employees were appropriate, or indicate that the allegations had been investigated.

The Complaint Resolution Letter concluded with a statement that Mercy told the DDS investigator that she “is doing fine and does not need any assistance (from DDS).”

In a letter to DDS, appealing the September 30 Complaint Resolution Letter, Mercy denied that she had said she was not in need of services. She also stated that her removal from Karen’s home had been traumatic for her.

“They moved me to a horrible place with strangers that didn’t speak English,” Mercy stated in her appeal letter. “I told (the DDS service coordinator) to get me out of there and bring me back home, that I was not going along with this.  I explained that I was happy where I was and no one would listen. No one from DDS did anything to get me home.”

Mercy added that she had stated repeatedly that she wanted to continue receiving shared-living services from Karen, but that Venture had terminated its payments to Karen.

Prior to May 23, Venture had been paying Karen to provide shared-living services to Mercy. But Venture terminated its contract with Karen on the same day Mercy was removed from her home. A notice of termination of Karen’s contract from Venture did not contain a reason for the termination.

Both Mercy and Karen contend that Venture was retaliating against them because they had complained to managers of the organization in April that two of its employees had been verbally abusive toward Mercy.

As a result of the contract termination, Karen said, she has not been paid since May for caring for Mercy in her home.

In July, COFAR first emailed DDS Area Director Haley and to Dorothy Cote, Venture executive vice president and CFO, raising concerns about the removal of Mercy from Karen’s home and the termination of Karen’s shared-living contract. To date, we have not received a response from either Ryder or Cote.

Full investigation should have been undertaken

According to letters dated May 27 to Mercy from DDS Area Director Haley, the allegations made by Karen were referred to the DDS area office to conduct “Administrative Reviews.”

Administrative Reviews don’t appear to be required to meet minimum standards for investigations under the DPPC’s enabling statute and regulations. Those standards for full investigations include requirements that both the alleged victim and reporter of the incident be interviewed by an investigator.

DPPC has a supervisory role to ensure that full investigations meeting minimum investigative standards are undertaken in instances over which the agency finds it has jurisdiction, according to the statute and regulations. A key factor in determining that jurisdiction is that the victim has suffered a “serious” physical or emotional injury. 

A serious emotional injury is defined in DPPC regulations as:

An injury to the intellectual functioning or emotional state of a Person with a Disability caused by either the verbal or nonverbal conduct of a Caretaker, including but not limited to, coercion; harassment; the inappropriate isolation of a Person with a Disability from family, friends or regular activity; and verbal assault, including but not limited to, ridiculing, intimidating, yelling or swearing (my emphasis).

In our email on October 17 to Alterio, the DPPC executive director, we argued that the agency does have jurisdiction in this case because we believe Mercy did suffer a “serious emotional injury” as a result of the Venture employees’ actions. As a result, we maintained that DPPC should either have undertaken a full investigation of Karen’s complaint, or should have referred the complaint to DDS for a full investigation meeting at least the minimum standards.

Mercy’s appeal letter additionally stated the following:

I have been treated so badly by DDS and so has Karen (Faiola).  My human rights were violated since I have the right to choose where I want to live and I have the right to change agencies. … I was threatened by my coordinator from Venture and my job coach was mentally abusive, yet nothing has been done.  Were they investigated? … My life has never been better and Karen is the best provider I ever had in the 20 years I’ve been with DDS and the 5 other homes I lived in.

Hogan, Mercy’s therapist, also stated that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy,” Hogan stated, “that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“

We are hopeful that in addition to undertaking a full investigation of the allegations that Mercy was abused emotionally, the state will finally acknowledge Mercy’s wish to continue receiving shared-living services from Karen. We also hope Karen will finally be paid for providing those services.

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