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