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Real Lives Law in Massachusetts falls short of expectations
Nearly 10 years ago, Person-Centered Planning (PCP) was officially authorized in Massachusetts by the Real Lives Law amid the promise that it would transform the way services for persons with intellectual and developmental disabilities (I/DD) were delivered.
PCP, also known as Self-Directed Services or Self-Determination, would give those individuals and their families control over their services. No longer would they be restricted to the so-called traditional services that the Department of Developmental Services (DDS) funds in group homes, larger facilities, and day programs.
Under the Real Lives Law, DDS clients themselves would be provided with funding and individual budgets, and would be free to design their own services and tailor those services to their own needs.
But today, it appears that the promise of PCP has largely been unrealized. As we discuss below, even key PCP supporters acknowledge that funding for PCP has been inadequate, and that DDS has been inconsistent and nontransparent in the way it administers the program.
Moreover, while the Real Lives Law was enacted in 2014 to authorize and promote PCP, DDS hasn’t even promulgated regulations to date to implement the law. This has left countless families and advocates frustrated because the lack of regulations has weakened the law’s potential impact.
COFAR anticipated the problems with Self-Directed Services
Back in 2014, COFAR anticipated many of the problems that Self-Directed Services in Massachusetts is now experiencing, particularly the problems people are having in developing individual budgets. We also expressed concern at the time that the Real Lives Law was written in such a way as to marginalize families and leave persons with I/DD vulnerable to exploitation.
Many of our concerns about the Real Lives Law are similar to concerns we are now raising about Supported Decision Making (SDM), which is a pending initiative in the Legislature that has many of the same goals as PCP.
In our view, the real purpose of PCP and SDM appears to be to save money on residential placements in group homes, and to curb the authority of guardians and family members to make decisions for their loved ones who are unable to make those decisions.
If DDS were serious about giving individuals true choice in designing their own services, the Department would not deny the choice of residential placements at the Wrentham Developmental Center and in state-operated group homes to many individuals and families, as it is now doing.
No dedicated funding and inconsistent rules regarding budgets
The Real Lives Law defines “Self-Determination” as “an approach to service delivery in which the participant is given control over the decision-making process for the participant’s supports or services and budget, and the participant may tailor the support to meet the participant’s needs.”
The law states that DDS must set individual budgets annually in a “fair, equitable and transparent manner.” And it states that the value of a participant’s individual budget should be “equivalent” to the amount the Department would have spent for that individual under the “traditional service model.”
But in both a DDS public hearing a year ago and an online meeting hosted last week by the Arc of Massachusetts, the latter of which I attended, advocates and family members expressed frustration that those statutory requirements are not being met by DDS. They maintained that the Department’s allocated budgets for PCP are not adequate.
Rick Glassman, director of advocacy at the federally funded Disability Law Center, testified in the November 2022 DDS public hearing that people engaging in Self-Directed Services are not getting a “proportionate amount” of funding from DDS relative to those receiving traditional services.
Glassman also maintained that the Department’s “methodology” for calculating self-directed budgets lacks transparency and consistency. “I think that’s problematic because legal rights affecting individuals are at stake,” he said.
DDS-funded research group decries lack of funding and budget standards
Even a DDS-funded policy analysis organization, the Human Services Research Institute (HSRI), stated in a report in 2018, more than five years ago, that Self-Directed Services in Massachusetts lacked “dedicated funding,” and that “many individuals and families reported a lack of familiarity with their budget amounts.”
The HSRI report added that there was “no standard parameter that links functional levels (of individuals) with individual budget amounts.” The report recommended that DDS consider asking the Legislature to create “a line item in the DDS budget for self-direction.”
It doesn’t appear, however, that DDS has subsequently proposed the creation of such a line item.
Law mistakenly labels the client as the “decision-maker”
Both Self-Determination, as envisioned in the Real Lives Law, and SDM use similar terminology in labeling individuals with I/DD as either the sole or central decision maker in determining which supports they will receive and in making other life decisions. While assigning the role of decision-maker to high-functioning individuals may be appropriate, we are concerned that it may leave low functioning persons vulnerable to exploitation.
As a 2013 article on SDM in the Penn State Law Review stated,
…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. (my emphasis)
Like SDM, there is no standard under the Real Lives Law for determining when an individual can understand and appreciate the consequences of decisions that they supposedly make.
Vague definitions of “participant”
We think the Real Lives regulations, in particular, should be drafted to ensure that family members and guardians are the decision-makers for persons who are low functioning. As previously noted, identifying even very low-functioning individuals as the decision-makers can make them vulnerable to exploitation from corporate providers, and marginalize families.
The Real Lives Law is vague in that regard, stating that the “participant” in a PCP arrangement is “an individual with disabilities receiving department services and, when appropriate, an individual’s parents, legal guardian, conservator or other authorized representative…” (my emphasis).
In including an individual’s parents and guardian in the definition of “participant,” the statute does appear to recognize that there may be instances in which an individual with I/DD may not be able to act alone in making key decisions. But the statute does not provide any guidance as to when it would be appropriate for those others to become involved, who would make the decision to include others, or who the “other authorized representative” might be.
The proposed regulations provide no clarity in that regard either. In fact, the regulations, as currently written, take even the word “parents” out of the definition of “participant.” Under the proposed regulations, the term “participant”…”may refer to the individual, their guardian or other legally authorized person, as the context implies” (my emphasis).
In the November 2022 public hearing, even the Arc objected to the removal of the word “parents” from that definition.
Potential conflicts of interest
In our view, in failing to make it clear as to who the participant is, the Real Lives Law and its proposed regulations serve to further reduce the decision-making authority of parents and family members, and make it more likely that the real decision-makers will be providers who may also benefit financially from providing services to the individual.
Federal regulations (42 CFR 441.301(c)(1)(vi)) state that development of a Person-Centered service plan “cannot be performed by the individual’s provider of direct services unless there is no other willing and qualified entity available to that individual.”
The Real Lives Law in Massachusetts does prohibit “Independent Facilitators,” who the law states could be hired to help a participant develop a Person-Centered Plan, from also providing services to that participant. The proposed regulations do not mention Independent Facilitators, however. And neither the law nor the proposed regulations appear to prevent any other service providers from both advising participants and providing services to them.
In sum, PCP appears to have conceptual flaws that we think are likely to apply as well to Supported Decision Making in Massachusetts.
Both concepts need to go back to the drawing board. Otherwise, it appears we will be in the same situation 10 years from now with regard to both of these options as we are today with regard to PCP. It will be a situation in which many, if not most, participants will continue to be dissatisfied and frustrated.
Two lawmakers support an independent evaluation of Andy McDonald
More than a year ago, we asked for an independent clinical evaluation of a now 47-year-old intellectually disabled man, who has not been permitted to visit his parents in their Sherborn home for the past 19 years because he has been deemed to be a danger to the community.
Finally, two state legislators are asking for the same independent evaluation of Andy McDonald. In a letter sent to the Department of Developmental Services on February 25, both Senator Richard Ross and Representative David Linsky further asked that the evaluation take into account the views of Andy’s father, Stan, and his step-mother, Ellen, who have been fighting for years for supervised visits home for him.
Not only is Andy prohibited from visiting the home he grew up in; Stan and Ellen are not even permitted to discuss the topic with him. Under the rules imposed by his DDS-funded group home, Andy, who has frequently expressed a longing to see his home again, is forbidden from mentioning his desire to do so. It seems like a violation of free speech; but then again, when you are under the control of both the DDS and probate court system, your right to self-determination becomes very limited.
That loss of self-determination may be appropriate in some cases; but the McDonald case shows how dysfunctional the system can get. The case is replete with questions about the validity of previous clinical evaluations of Andy and about a 2006 probate court ruling, which concluded that Andy was sexually dangerous and should never be allowed to return home.
In the 2006 ruling in which he denied Stan’s bid for guardianship of Andy, Middlesex County Probate Court Judge Edward Rockett stated that Andy had been arrested in 1990 for sexual assaults of three young girls who lived across the street in Sherborn. That was not true, however.
Andy was arrested in May 1990 for threatening an unidentified person during a telephone call, according to the district court record. The nature of the threats was not disclosed. In July of that year, he was arrested for disturbing the peace in downtown Sherborn and with assault for punching his stepmother, according to a police report. Both Stan and Ellen say the punch was accidental and occurred while Ellen was driving Andy to the police station after he was accused of disturbing the peace. “He was flailing his arms, not threatening me,” Ellen said in an email this week, “and his fist landed on me. It didn’t hurt me. It made a red mark that faded shortly after.”
There is no indication in the police reports that Andy ever sexually assaulted anyone.
In his ruling, Rockett also cited a statement by the clinical director of Andy’s group home that Andy had told him he had had sexual fantasies about children. But Rockett acknowledged in his ruling that there was testimony in the court case that Andy “will always say what he thinks other people want to hear. This causes his statements to be very inconsistent.”
As we noted in a previous post about this case, Andy was committed to McLean Hospital in Belmont immediately after the July 1990 threatening and disturbing-the-peace incidents. In the years following, he was subjected to a series of inappropriate residential placements and treatment, in many cases because a series of court-appointed guardians, state agencies, and providers made the wrong decisions regarding his care.
Most of the decisions about placement and treatment of Andy were made without the consent of Stan, who had agreed to the appointment of a guardian for Andy in 1986 as part of the settlement of a longstanding custody battle over him with his former wife. Andy has had a series of court-appointed guardians since, and Stan has never been able to regain that guardianship. His attempts in probate court to do so have been opposed by DDS.
Andy has not exhibited any significant behavioral problems in a decade and has been taken on community outings to many places other than his home without any behavioral incidents, according to Stan and to notations in Andy’s clinical care plan. But that record of good behavior does not appear to have changed the position of either the probate court, DDS, or Andy’s current court-appointed guardian that he must never be allowed to go back to his hometown.
That ban on visits to Andy’s boyhood home combined with his group home’s policy that he must not even discuss his desire to visit his parents there amounts to psychological abuse, Stan maintains. Moreover, the situation raises concerns in Stan’s and Ellen’s minds about Andy’s future and what will happen when they are no longer able to travel from Sherborn to visit him in his group home in Northborough. Stan is 79 years old.
In 2000, Ronald Ebert, a psychologist, recommended that the staff of Andy’s group home try a “trial visit” to the Sherborn Inn to hear Stan, an acclaimed jazz musician, play in his band if it could be demonstrated that the persons Andy was accused in 1990 of threatening no longer lived in town. In fact, Stan says, those persons had moved away as of that time. “If such visits can be managed successfully, there is no reason why they could not be built into his visit schedule…,” Ebert wrote. But Ebert’s recommendation was never heeded.
As is the case with he parents of Sara Duzan, who were denied all contact with their daughter for several months, Stan and Ellen McDonald have found themselves trapped in a Twilight-Zone-like situation imposed on them by the state’s dysfunctional human services and probate court system. It’s long past time to bring in someone with a truly independent view to take a new look at this case.
‘Real Lives’ bill is now law, but it raises many questions
The ‘Real Lives’ bill is now law, and it is somewhat better than the vehicle it was in danger of becoming for the financial benefit of corporate providers to the Department of Developmental Services.
But what has come out of the legislative process late last month is a compromise between two competing bill drafts, even the better of which raised some serious questions. The final compromise was apparently negotiated among key lawmakers in the House and Senate, with the input of a major provider-based organization, the Arc of Massachusetts.
The legislation introduces what is called “person-centered planning” in providing care and services to persons with intellectual and developmental disabilities. It is touted as providing individuals with more choice and “self determination” in the services they receive from the Department of Developmental Services.
One of the main thrusts of the new law is to provide developmentally disabled persons with control over their own “individual budgets” to pay for DDS services. The introduction of individual budgets is billed as a key departure from the current system in which DDS controls the budget process in contracting with corporate providers to operate group homes and provide other services.
But we think the development of these individual budgets is actually where this legislation runs into problems. Many, if not most, developmentally disabled people are not in a position to manage complex budgets involving state and sometimes federal funds or to make informed decisions about their own needs and services. As a result, the law provides that they can engage a “chosen planning team,” “financial management services,” and “independent facilitators” to help them do those things. These entities, some of which will be privately operated, yet state-funded, will work with each individual’s clinical care team to make those planning and financial decisions.
There are two major drawbacks to this approach. One is that the independent facilitators and financial managers will constitute a new layer of bureaucracy, which will mean higher costs to taxpayers as well as a managerial nightmare for DDS.
Who will actually determine, for instance, what a program participant’s individual budget actually is? The law states that DDS “shall negotiate with the financial management service provider uniform rates for each given unit of service, to be paid by each participant from the participant’s individual budget” (my emphasis).
Does this mean DDS is required to enter into negotiations with an undetermined number of private financial management services on behalf of thousands of individual clients?
Related to this is the question whether DDS actually knows what an individual’s total cost of care is, and whether the Department currently calculates that total cost. In the community-based system, these costs are spread over a number of budgets, including the DDS and MassHealth budgets. The Department’s contracts with group homes are based on only a portion of these costs, which are not necessarily specific to the individual residents.
In that respect, we think the Real Lives legislation would make more sense if it involved giving an individual and his or her guardian more authority simply to plan their services, and stopped there. There is no good reason that we can see to also give a program participant authority to manage and disburse state and federal money. That should remain a DDS function. Giving a developmentally disabled individual control over the disbursement of such funding could potentially open them up to financial exploitation. But the new law appears to give those disabled individuals that authority with the following language:
“…with self-determination, the participant has control over the annual budget, the participant is central to and directs the decision-making process and determines what supports are utilized and the service system is flexible, so the participant may tailor the participant’s supports to meet the participant’s needs…” (my emphasis).
The second major drawback in the Real Lives approach is related to the first. The law appears to leave the individual’s guardian almost out of the picture. The “participant” in the program is defined in the legislation as “an individual with disabilities receiving department services and, when appropriate, an individual’s parents, legal guardian, conservator or other authorized representative…” (my emphasis).
As we asked Senator Michael Barrett’s staff, when we were sent his version of the then bill for comments last January, who will determine when it is appropriate to allow an individual’s guardian or family to participate in their ward’s person-centered planning and self-determination program? We noted that the vague language in the bill could leave incapacitated individuals even more vulnerable to financial exploitation by persons other than their guardians or family members who seek to make decisions about their care or financial affairs.
We recommended that a statement be added in the bill making it explicit that in a case in which an individual has a legal guardian, the guardian would be considered the participant in the self-determination program. While Barrett’s office did produce a thoughtful redraft of the very flawed original version of the bill, our suggested language ensuring participation of guardians was not inserted.
The law does potentially give the guardian a consulting role in the development of his or her ward’s individual budget, but that role appears to be an indirect one that is based on a reference to the individual’s care plan or Individual Support Plan (ISP). In contrast is the much more central decision-making role that is given to the developmentally disabled individual himself or herself.
So, the upshot seems to be that while the law gives a central decision-making role to the disabled individual and possibly his or her financial management service, the individual’s guardian will have direct input only in cases in which someone, who is not specified, determines it is appropriate for the guardian to be involved. Otherwise, the guardian has, at most, a consulting role to DDS. This is very troubling to us.
Also, we had suggested that a statement be added to the definition of “self-determination” that participants and their guardians would be given an explicit choice among all available options for care, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. That statement was never added either.
As we have pointed out in a number of posts, both state and federal law provide that developmentally disabled persons seeking services are entitled to a choice of all available types of care, including state-run and institutional care. But DDS routinely denies this choice to applicants for services, and presents provider-operated residential care as their only option.
Another serious problem with the Real Lives law is that the final compromise removed language from Barrett’s version which would have helped ensure that an advisory board created under the legislation is not dominated by corporate providers. We are glad to see, though, that an unwarranted “contingency fund” for the providers was taken out of the bill.
In the final analysis, we think clients, their guardians, and families should have choice over the services they receive, but they should not have to manage state-funded budgets to pay for them. State and local governments fund public school systems in the state, for instance. People have the choice of traditional public or charter schools, but families are not provided with pots of state and local funds from which they then pay the schools via private financial managers.
Service choice is already available to developmentally disabled persons through the ISP process, but it is less robust than it could be. As noted, there is no real opportunity provided to most developmentally disabled people under the current system or under the Real Lives legislation to choose the state-run care option. At the very least, the Real Lives law should be amended to correct that situation and to make the guardian’s role explicit in person-centered planning.
We hope these changes are made to the new law in the next legislative session.
The Sherlock Holmes-style mystery of the secret switch of the ‘Real Lives’ bill versions
How exactly does it happen in the state Legislature that a good piece of legislation gets “lost” just as a bad piece of legislation has been substituted for it?
That seems to be exactly what happened with the ‘Real Lives’ bill this spring in the state Legislature. There has long been a heavy dose of game-playing by corporate providers to the Department of Developmental Services in their years-long quest to gain passage of this bill; but the secret substitution of their preferred version for another, much better, version of the bill this spring may take the proverbial cake.
In this case, the sleight-of-hand move may bring the DDS providers as close to winning passage of their version of the bill (H. 4237) as they have ever been. We understand H. 4237 is going to be sent to the Senate very soon from the House for final passage.
This is a badly flawed piece of legislation. The much better redraft of this bill was approved in early May by the Children, Families, and Persons with Disabilities Committee (H. 4063). But somehow, as noted, that redraft, which was done by Senator Michael Barrett’s office, got lost one month later in the legislative process. Somehow, H. 4237 was substituted for H. 4063 in the Health Care Financing Committee.
When I talked a few weeks ago with a staff member of the Health Care Financing Committee, I was told the substitution was a mistake. But if it was a mistake, it’s one that has yet to be corrected; and it may soon be too late to correct it. (Maybe we can engage a modern-day Sherlock Holmes to find out what really happened to Senator Barrett’s version of the bill. Maybe it has been hidden away in a State House attic, a la Holmes’s Adventure of the Norwood Builder.)
The Real Lives concept is intended to serve the laudable goal of providing intellectually disabled persons and their guardians with greater choice and “self-determination” in obtaining services from the Department of Developmental Services. But as currently drafted, H. 4237 is little more than a vehicle for the financial benefit of DDS corporate providers.
As we have pointed out in numerous blog posts and in our July newsletter, the current text of H. 4237 would inappropriately place DDS provider-based organizations on an advisory board that would help design the self-determination program. These same providers were involved in drafting this legislation, and stand to benefit financially from any program they help create.
In addition, the current draft of the bill would establish a “contingency fund,” which would further compensate DDS providers financially if and when residential clients leave them for other providers. These and other provisions in the current draft of the legislation create unacceptable conflicts of interest.
In contrast, Barrett’s redraft of the legislation, which was approved in May by the Children and Families Committee, would have removed the contingency fund and all references to provider-based organizations on the advisory board. That redraft (H. 4063) would, moreover, have required that more than 50 percent of this board be made up of individuals who are financially independent of any provider.
But as noted, when H. 4063 was sent by the Children and Families Committee to the Health Care Financing Committee in early June, the redraft was removed, and the provider-friendly version of the legislation was re-inserted as H. 4237. As unacceptable as this bill has become, the process under which the redraft was removed from it is equally unacceptable.
Please ask your senator to vote against H. 4237 in its current form, and to send it back to the committees it came from so that Senator Barrett’s redraft can be found and restored to it.
It’s time to stop playing budget games with the ‘Real Lives’ bill
Once again, proponents of the ‘Real Lives’ bill have attempted an end-run around the normal legislative process by inserting the measure into the state budget bill in the House.
As we’ve pointed out many times, while the Real Lives bill is intended to provide intellectually disabled persons with choice and “self-determination” in obtaining services from the Department of Developmental Services, it has been drafted with a number of provisions that have turned it into a vehicle to benefit DDS corporate providers.
Using the same tactic he employed last year, Rep. Tom Sannicandro, the perennial sponsor of the proposed legislation, inserted the measure into the Fiscal Year 2015 budget bill, which was debated last week in the House. Only this time, Sannicandro and the providers appear to have ignored a thoughtful re-draft of the bill by state Senator Michael Barrett that is reportedly due to be approved by the Children, Families, and Persons with Disabilities Committee any day now. In his redraft, Barrett, who is Senate chair of the Children and Families Committee, removed the overtly provider-friendly provisions from Sannicandro’s version.
Sannicandro seems to be continuing to file his version of the bill at the behest of the Association of Developmental Disabilities Providers (ADDP) and the Arc of Massachusetts, which don’t appear to like Barrett’s redraft. That appears to be because Barrett’s redraft includes a provision intended to prevent those organizations from benefiting financially from the legislation.
We’ve blogged many times about what we see as serious conflicts of interest posed by Sannicandro’s version of the bill, including the fact that it would put the Arc and ADDP on an advisory board created to help DDS develop the self-determination program, and would establish a “contingency fund” that would compensate providers financially when residential clients leave them for other providers (effectively paying them for not providing services). Barrett’s redraft not only removes the contingency fund as well as all references to the Arc and the ADDP from the bill, it states that more than 50 percent of the advisory board must be made up of individuals who are financially independent of any DDS provider.
Yet, the vote in favor of Sannicandro’s amendment in the House last Wednesday was unanimous. We can only hope that most of the 150 House members who voted for Sannicandro’s budget amendment were not aware of Sen. Barrett’s redraft. But certainly Sannicandro has known about Barrett’s redrafted version. After all, he was invited by Barrett’s staff earlier this year — just as we, the Arc and ADDP were — to comment on the redraft.
I talked on Tuesday to a member of Sannicandro’s legislative staff, who said he didn’t know what Sannicandro’s position is on Barrett’s redraft. The staff member, however, did maintain that passage of Sannicandro’s version of the bill as part of the budget would not necessarily “cut off” passage of Barrett’s version of the bill. But I didn’t receive a clear answer from the staff member as to why Sannicandro would file his version of the bill as a budget amendment if he is not opposed to Barrett’s version.
We hope Sannicandro’s version of the bill will not appear in the Senate budget as it did in the House. We don’t think any version of this complex bill should be decided as part of the budget debate. A staff member in Barrett’s office said this week that the Senate leadership is aware “we’ve (Barrett and his staff) worked hard on our redraft.” The staff member said they were not aware of anyone planning to file an amendment to the Senate budget similar to Sannicandro’s.
We have a number of concerns even with Barrett’s version of the Real Lives bill. But it’s a lot better than Sannicandro’s version, and it is, moreover, moving through the appropriate legislative process.
‘Real Lives’ bill gets more real
A redraft of a bill that calls for “self-determination” in services for persons with developmental disabilities in Massachusetts no longer calls for creation of a fund that would subsidize corporate providers to the Department of Developmental Services for not providing services.
In addition, the redraft of the “Real Lives” bill by the office of state Senator Michael Barrett, co-chair of the Children, Families, and Persons with Disabilities Committee, appears intended to ensure that an advisory board that would be established under the bill would not be dominated by providers. According to the redraft, more than half the membership of the advisory board must consist of family members and other participants who are “financially independent” of any provider of services to DDS clients.
Among those specifically named to the advisory board would be the state auditor and inspector general.
The “Real Lives bill,” which was originally sponsored by state Representative Tom Sannicandro and then state Senator (now Congresswoman) Katherine Clark, is intended to give individuals more choice and say in the services they receive from the Department of Developmental Services. COFAR was among a number of organizations invited earlier this year by Barrett’s staff to comment on the redraft of the proposed legislation.
It isn’t clear when the full Children and Families Committee will vote on the redrafted bill.
Self-determination or “self-directed services” are part of a national movement in care of the disabled that is intended to provide individuals with “opportunities and experiences that enable them to exert control in their lives and to advocate on their own behalf,” according to the American Association of Intellectual and Developmental Disabilities. Under the redrafted Real Lives bill, individuals with developmental disabilities or their guardians would be given a certain degree of authority to develop their own state-funded budgets from which they could select and “purchase” services identified in Individual Care Plans (ISPs).
While we at COFAR still have a number of concerns about the bill, we support many of the changes in the redraft, including the removal of a proposed “contingency fund” in Sannicandro’s and Clark’s previous version, which would have been used to inappropriately subsidize providers that lost residential clients who had chosen to live elsewhere. In effect, as we’ve argued, the fund would have subsidized providers for not providing services.
We also strongly support provisions in the redraft that require disclosure of services and supports available to participants as well as information that would enable participants to chose among providers and programs.
It is not clear what the positions of the major provider-based advocacy organizations in the state – notably the Arc of Massachusetts and the Association of Developmental Disabilities Providers – are regarding the current version of the bill. Both organizations were in support of the previous draft of the bill, which we had strongly objected to. Neither the Arc nor the ADDP appear to have commented publicly on the redraft by Barrett’s office.
Our main concerns concerning the redraft of the bill (as well as with the original version of the measure) are the following:
- It is not clear to us how “self-determination,” as defined in the redraft of the bill is substantially different than the current ISP process as specified in current laws and regulations.
- The bill should include a requirement that participants in self-determination be provided with the explicit choice, as specified in federal law, of all residential options, including Intermediate Care Facility (ICF) and state-operated group homes, in addition to other forms of community-based and home-based care.
- The bill should make it clear that in cases in which a developmentally disabled person has a legal guardian, all decisions regarding supports and services would be made by the guardian and not the incapacitated individual.
- The bill would establish positions, such as “independent facilitators,” which might be duplicative of existing state positions, such as service coordinators. We think the independent facilitator positions should be removed from the bill.
- The bill essentially puts money into the pockets of people who are disabled, potentially making them targets for exploitation.
In some key areas, the redraft is a major improvement over the original version of the bill, which had specified that members of both the Association of Developmental Disabilities Providers and the Arc of Massachusetts, an organization affiliated with the ADDP, would sit on the advisory board. The advisory board would also have included a number of community-based advocacy organizations that share the Arc’s and ADDP’s support for privatizing state-run services for the developmentally disabled.
This same provider-dominated advisory board in the original bill would have been authorized to “assist” DDS in developing the contingency fund, mentioned above, which would have provided subsidies to the providers. Under the original version of the bill, the fund would have been “comprised of 40% of the savings from the closure of Monson, Glavin and Templeton (developmental centers)….”
The redrafted bill removed the contingency fund entirely from the measure and states that the advisory board:
… shall have 21 members, including but not limited to participants, family members, legal representatives or guardians of participants, financial management services, independent facilitators, providers of direct services, supports and goods, department staff, members of advocacy organizations, members representing general taxpayers, and independent experts on consumer decision-making, consumer finance, self-determination models, nonprofit and for-profit services markets and competition, and services for persons with disabilities; provided, however, that more than 50 per cent of the advisory board shall consist of participants, family members, independent experts, members of organizations representing general taxpayers, and other persons financially independent of any entity providing direct services, supports or goods to persons with disabilities…
There is no longer any mention in the redraft of the Arc or the ADDP. Nevertheless, we foresee some problems in the setup of the board as it is described in the redraft.
Under the redraft, the advisory board would still be chosen by DDS, which has long maintained close ties to the Arc and the ADDP. It may be a matter of interpretation as to what is meant by “persons financially independent” of any provider-based entities. DDS might still load the board with members of advocacy groups who may have no explicit financial ties to the providers, but who are nevertheless advocates of privatized services.
We think it might be best to scrap the advisory board altogether in the bill and encourage DDS to seek advice and guidance from all stakeholders in public hearings in developing a self-directed services program. That would open up the process to all public input and make it more transparent as well.
Also, the chief justice of the probate court as well as the district attorneys across the state should be consulted for their input on the bill. The probate court will have a natural interest in proposed legislation that may potentially limit the role of guardians. As currently written, the bill “does an end run around the guardianship statute,” according to Thomas Frain, an attorney and COFAR Board president.
Frain also maintains that the district attorney’s offices should be consulted “for the inevitable exploitation of intellectually disabled people that will arrive along with this next chapter in the self determination story. Although improved following its review by Senator Barrett and his staff, the bill appears to be yet another attempt by corporations to divert more taxpayer monies into their own pockets, regardless of whether any of it actually gets to the intended beneficiaries: the intellectually disabled,” Frain maintains.
We hope Senator Barrett’s improvements hold up at the very least, and that further improvements are made in this bill as it comes out of the Children and Families Committee and moves through the House and Senate.
COFAR blog 