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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.
‘Real Lives’ contract with private firm raises questions
As part of a push toward so-called self-directed services for the developmentally disabled, the state has established a payment system for those services that has exclusively benefited a Boston-based consulting firm.
The Department of Developmental Services is paying Public Partnerships LLC (PPL) close to $1 million a year in fees to perform what appear to be primarily check-processing and basic accounting services in connection with three self-directed services programs, according to records obtained from the Department under a Public Records Law request and to online contracting information. Those programs currently appear to serve less than 1,000 people in the DDS system.
In a written response to us, Marianne Meacham, the DDS general counsel, said it would be “inaccurate” to characterize PPL’s services as check processing and basic accounting, and maintained that “the functions performed by (PPL) far exceed” those services.
However, with the exception of requirements to elicit feedback from participants in one program and to handle customer service calls in another, the tasks or requirements listed in PPL’s contractual Scopes of Work for Fiscal Years 2014 and 2015 all appear to be check processing, accounting, or website management functions. When we had previously asked DDS for records showing or describing “all services provided to DDS by PPL” for fiscal 2014 and 2015, the Department referred us to the contractual Scopes of Work for those fiscal years.
Moreover, there were significantly fewer requirements listed in those Scopes of Work than in a Request for Response (RFR) issued by DDS to prospective bidders for a contract in 2008 for “fiscal intermediary services” for two of the self-directed services programs. PPL was selected in response to that RFR process.
The requirements in the 2008 RFR included helping program participants manage individual budgets for care. Individual budgets are a key feature of self-directed services. That requirement, however, was not included in either the 2014 or 2015 Scopes of Work.
In addition, a third self-directed services program appears to have been added since 2008 to PPL’s contract, potentially increasing the company’s fees; yet it does not appear that PPL was required to bid to become the fiscal intermediary for that additional program. It also does not appear that the addition of the new program to PPL’s Scope of Work resulted in a net increase in PPL’s work requirements.
According to information on file on the state Operational Services Division website at www.mass.gov/ufr, PPL has received administrative fees from DDS that grew from $529,435 in fiscal 2010 to $969,282 in fiscal 2014, an increase of over 80 percent.
Under the three self-directed programs, total state revenues processed by PPL increased by about 14 percent in that same time period. PPL processed about $14 million in state payments in Fiscal 2014, up from about $12.4 million in Fiscal 2010.
Meacham stated in her response that the contract with PPL incorporates all of the requirements in the original 2008 procurement solicitation. She did not address the apparent addition of the new self-directed services program to PPL’s contract without bidding.
Under self-directed or “person-centered” services, participants prepare “individual budgets” for care and services. Fiscal intermediaries are generally private firms that contract with the state to manage and direct payments from those individual budgets to service providers.
The stated goal of self-directed services is to give participants more choice and say in the care they receive. In what appears to have been a key effort to expand those programs, the Legislature passed the ‘Real Lives’ law last year, which appears to formalize the self-directed services process.
We have raised concerns, however, about the level of oversight of self-directed programs and whether the Real Lives law, in particular, will put too much decision-making power over an individual’s funds into the hands of private companies.
Traditionally, DDS itself has paid providers of direct-care and other services, and has managed those services in accordance with each client’s care plan, known as an Individual Support Plan (ISP). While ISPs still govern self-directed services provided in the DDS system, DDS appears to have given up at least some of its traditional control over the funding of those services.
Meacham’s response stated that the federal government has encouraged states to develop self-directed services programs, and requires that payments for those services be made by a private fiscal intermediaries. In 2008, DDS issued an RFR for fiscal intermediary services for two self-directed services programs in Massachusetts: the Adult Participant-Directed Program (PDP) and the Child Autism Spectrum Disorder program (ASD).
Subsequently, a third program, as noted, was added to PPL’s contract: the DDS/Department of Elementary and Secondary Education (DDS/DESE) home-based care program for children.
PPL was awarded the contract for the first two programs in 2008, and the contract has been extended each year since then. Fiscal 2016 may be the last year of the contract before it has to be re-bid through a new RFR.
Under PPL’s latest contractual Scope of Work for the three self-directed services programs for fiscal 2015, PPL is responsible for performing the following functions:
- Processing and sending checks to providers of services to participants in the self-directed services programs.
- Maintaining invoices which document expenditures.
- Maintaining a list of those providers and processing CORI or criminal background checks of providers in the PDP and ASD programs. The Scope of Work states that the DDS/DESE program is excepted from this process.
- Measuring performance of the providers, although the Scope of Work does not specify how that is to be done. The Scope of work referred to an “Appendix A” regarding “the performance measurements and performance measurement process.” However, no such appendix exists, according to a DDS assistant general counsel, who stated to us in an email that the reference to an Appendix A was inadvertent.”
- Eliciting feedback on the PDP program from participants through focus groups and a yearly satisfaction survey.
- Handling what are called “Tier 1” customer service calls and inform families and providers about forms and website processes for the DDS/DESE program.
- Training designated DDS staff on forms and processes for the DDS/DESE program.
The 2008 RFR, which resulted in the ongoing contract with PPL, includes requirements similar to those above, but also has what appears to be a much more extensive list of requirements for the fiscal intermediary. Those additional requirements in the 2008 RFR include “maintaining” individual budgets for participants and “helping participants manage their individual budgets.” This includes monitoring the participant’s spending and assuring that spending is only for approved services.
Other requirements in the 2008 RFR that do not appear in either the 2014 or 2015 contractual Scopes of Work for PPL include the following:
- Protecting program participants from abuse and neglect.
- Hiring service providers and developing their contracts.
- Serving as liaison between participants, their service coordinators, and service providers.
- Assisting providers in qualifying for waivers under the federal Medicaid program for Home and Community Based Services.
- Managing a network of Support Brokers, who are also hired to help participants manage their individual budgets and services.
- Tracking all complaints from participants and reporting quarterly on those complaints to DDS.
In her response, Meacham stated that PPL does track all complaints from participants and does take actions to protect participants from abuse and neglect, although she didn’t specify what those actions are. She also said PPL manages workers compensation policies and withholds state and federal taxes on behalf of program participants who hire caregivers out of their individual budgets.
Whether or not PPL’s contractual requirements have been reduced, it is apparently legal to negotiate a state contract with the winning bidder on an RFP to reduce work requirements; but a state contracting guidelines document states that those reductions must be minor in nature.
In her written response, Meacham also contended that it was not accurate to state that less than 1,000 people currently participate in the three self-directed service programs. However, Meacham’s response stated only that “over 300 families were enrolled as participants” in the ASD program in the last two fiscal years; that the PDP program “serves over 500 individuals” per year, and that the DDS/DESE program “has remained at a low level due to individuals not electing self direction.”
According to DDS information forwarded in March from state Senator Jenifer Flanagan’s office, a total of 784 people were self-directing their services in the DDS system. DDS was projecting that that number would double over the next four years to 1,568.
According to the PPL Scopes of Work for Fiscal 2014 and 2015, PPL gets paid under each of the three programs in different ways:
- PDP program: PPL receives a monthly fee of 6 percent of consumer’s total self-directed budget allocation.
- ASD program: PPL receives $131.25 per member per month.
- DDS/DESE program: PPL receives 8 percent of funds expended under the program.
In the final analysis, PPL may be charging DDS the market rate in fees for the services it performs under its contract. But payments of close to $1 million a year in fees to one firm to process payments under three relatively small programs raise questions for us about the value and price of these fiscal intermediary services.
We think the federal government should re-examine the amounts states such as Massachusetts are paying for fiscal intermediary services and should assess whether those services could be provided more cost-effectively in house.
‘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.
COFAR blog 