COFAR blog

Last year, we raised a number of questions and concerns about the “Real Lives” bill, which its supporters claim would give people with intellectual disabilities more choice in the services they receive.

The measure was passed by the state House last year, but died in the Senate.  It has been reintroduced this year by its chief sponsor, Representative Tom Sannicandro.

Unfortunately, it doesn’t appear any substantive changes were made in this year’s version of the bill (HD 1379), which, once again, would give corporate service providers both unnecessary subsidy payments from the state and a disproportionate say in how the program is designed and run.

We also don’t believe the bill, as written, would accomplish its supporters’ intent, which is to “limit  government intrusion into people’s lives and allow them to be more creative in how they design services to meet their needs.”

Aside from failing to adequately define many of the terms in the bill (as we previously pointed out about last year’s bill), the measure this year would appear to still leave it up to the Department of Developmental Services to make the key decisions about which services an individual would receive.

The bill would provide individuals with an “allocation of resources” to allow them to plan their own services and choose where they would live and who they would live with, according to the bill’s supporters.  This planning process is referred to as “self-direction.”  The Arc of Massachusetts, one of the bill’s key supporters, maintains that the legislation would “allow people with developmental disabilities…to use their money as they see fit…”  

But the actual language of the bill states that “The Department (DDS) shall determine an individual’s prioritization for services and the amount allocated for an individual’s services…” (my emphasis).   It sounds as though the individual’s amount of self-direction under the bill would be quite limited.

But our main reservation about this bill still centers around the potential benefits that the corporate providers would appear to get from it.

In a written response to our blog post last year, the Arc maintained that far from being the intended beneficiaries of the bill, the state-funded providers almost didn’t support the measure as originally drafted because it supposedly gave so much independent power to individuals and guardians.

Maybe, but as written now, the bill seems to be overly generous to the providers.  For instance, it contains the same language as last year in establishing a “contingency fund” that would, among other things, “mitigate the impact to providers” if individuals were to choose to leave them for other providers. 

This, in our view, amounts to a subsidy to the providers and has nothing to do with the stated purpose of the bill.   The provision would essentially compensate providers for not providing services — sort of like paying farmers not to grow crops.

In addition, as was the case with last year’s version, the bill would create a “Self-Determination Advisory Board,” which would “evaluate and advise the Department on efforts to implement self-direction.”  The legislation specifies that the Advisory Board would include providers, the Association of Developmental Disabilities Providers (the ADDP, which represents the providers), the Arc, “support brokers” (more about them in a minute), and a number of community-based advocacy organizations.  No state employee unions or organizations such as ours with a different point of view would be included.

Also, this same provider-dominated Advisory Board  would somehow “assist” DDS in developing the contingency fund, mentioned above, which would provide those subsidies to the providers.  

And, if that weren’t enough, the contingency fund would be “comprised of 40% of the savings from the closure of Monson, Glavin and Templeton (developmental centers)….”   In our view, this fund is being established on the backs of the residents who are being evicted from those facilities and being moved, in many cases, to provider-run residences. 

No wonder the providers are supporting this legislation.  But it doesn’t end there.  Let’s go back to those support brokers, which are defined in the bill as persons who would “assist” individuals in developing their “person-centered plans” for services.   A support broker would operate in conjunction with a “fiscal intermediary,” which the bill defines as “a financial management service…to assist an individual who self-directs in disbursing funds allocated to an individual.”

The employment of support brokers and fiscal intermediaries sounds like more business opportunities for corporate providers.  In fact, one of the concerns we raised about it last year was that the support brokers sounded duplicative of the current function of state service coordinators.  Service coordinators are state employees who already plan and monitor individualized services for people in the community system.

We remain concerned that the privatized support brokers and fiscal intermediaries established under the bill could take jobs away from service coordinators and other state employees who currently provide many of those same functions in carrying out DDS clients’ Individual Support Plans.  This was reportedly a concern of the SEIU, a state employee union, which was engaged in negotiations over the bill last year.  Unfortunately, it doesn’t appear the SEIU was very successful in those negotiations.

We understand, for instance, that there was a proposal or agreement at one point late last year to include explicit language in the bill about using service coordinators as support brokers, but this apparently didn’t happen.  The current bill does state that “the support broker shall be made available through the Department or through a qualified private sector broker of the individual’s choice.”  But that still doesn’t seem to us to guarantee any of this work for service coordinators or that DDS would necessarily even select state employees as support brokers.

Finally, the only substantive change from last year that we could find in the bill was a 90-day deadline to DDS to transfer someone who wants to leave their provider to “an available alternative.”  Of course, this might hinge on whether the Department determines that an alternative is available.

We’re not saying this last provision isn’t worthwhile (although we disagree, of course, with subsidizing providers who lose any of those clients), but, in itself, we don’t think it justifies the bill.  Why not make this 90-day provision a stand-alone bill?

In sum, it is disappointing to us that Representative Sannicandro, after talking to us and listening to our concerns last year, appears to have made little or no substantive changes to the bill.  As such, we cannot support this bill as it stands so far.  We would be happy to talk again with Rep. Sannicandro if he is open to our input on this measure.

We sent an email listing our continuing concerns this week to Rep. Sannicandro’s office.  We’ll report on what we hear back.