The ‘Real Lives’ bill hasn’t gotten any more real

(Cross-posted from The 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.



Discuss

3 Comments . Leave a comment below.
  1. Thanks

    for staying on top of this and keeping us posted.

    I don’t know because I haven’t read the bill and shouldn’t even make a comment without doing that–BUT–when I read this the very first thought that came into my head was “just the creation of another layer of bureaucratic drain that further distances the disabled from taxpayer money intended for them. Just another scam.

    If ARC supports it, I’m automatically against, I don’t care what it is. The ARC abandoned its fundamental mission of advocating for ALL the mentally retarded/developmentally disabled when it stood against the most vulnerable individuals living in the developmental center and advocated for their eviction from their homes. Interesting they intend to use the money supposed saved by closing these center to fund this new drain on the budget.

    Incidentally, does anyone know where the tens of millions went that was supposedly saved by these evictions and closures?

  2. I said in my post above that I would report back here with any response

    from Rep. Sannicandro’s office to our concerns about this bill. Rep. Sannicandro’s staff director, Courtney Elgart, has responded to us. Below is a listing of her major points made in an email to me, and my responses to them:

    1. Elgart said she disagreed that the bill is provider-dominated, and that of the 8 organizations specified on the Advisory Board under the bill, only 2 organizations are associated with providers, while the rest are either family, public policy and/or self-advocacy groups.

    My response: Most, if not all, of the organizations listed on the Advisory Board are advocates of provider-based care and tend to represent higher-functioning individuals who are more likely to benefit from comunity-based care. Moreover, the Arc, the ADDP, Mass. Families Organizing for Change, Mass. Advocates Standing Strong, and the Disability Law Center have all publicly called for the closure of the developmental centers.

    The Developmental Disabilities Council is a state agency, and we understand that Mass. Families Organizing for Change is at least partly funded by DDS. The Arc and the ADDP, of course, are largely funded by the providers.

    2. Elgart said she disagreed with our contention that the language in the bill gives DDS the key decision-making power over an individual’s services.

    My response: The language in the bill states that “the Department will determine an individual’s prioritization for services…” Elgart stated that his would entail only “determining the amount of money the individual is eligible for,” but we think the language clearly goes farther than that.

    3. Elgart said a provision in the bill giving DDS 90 days to find another residential placement for an individual who wants to leave a provider “doesn’t hinge on an available alternative,” but rather requires DDS to find a suitable replacement “no matter what.”

    My response: The language in the bill uses the term “available.” Our reading is that DDS has 90 days to find an “available alternative.” This would appear to us to give DDS longer than 90 days if it determines nothing is available during that period.

    4. Elgart said, “Unfortunately, it appears that you (COFAR) fundamentally disagree with the underlying concept of self-determination.”

    My response: That is not the case. We have pointed out what we consider to be flaws in the drafting of this bill, which we think will prevent true self-determination from happening. We don’t disagree with the concept, we disagree with the approach taken by the bill.

    5. Elgart said she thought COFAR may have “an underlying concern” that the bill will force people out of institutions.

    My response: That is not our specific concern with this bill. Our concern is that we are in the midst of a handover of state services for some of our most vulnerable citizens to a relatively poorly monitored, corporate system of care.

    The people who deliver care for DDS are among the most experienced in the country at what they do. But their jobs are at risk due to the state’s bottom-line, cost-cutting policy of privatization. Unfortunately, this bill, as currently written, appears to further that process.

  3. So

    Mr. Sannicandro admits that persons with disabilities have little say in whether they receive services or the type of services they receive. This is a sad admission and interesting given that the Arc has pushed for person-centered planning.

    It seems that the only way to limit government intrusion would be to severely slash DDS administration, and change the regulations to favor disabled clients instead of the status quo and that’s not likely to happen.

    Where are families of the disabled and the disabled individuals themselves supposed to get the funds to pay the Arc’s support brokers and fiscal intermediaries? They charge lawyer-ly sums for their services. How could system-supported support brokers ever do the right thing by the client?

    The idea of paying the ‘private’ vendors when they lose a client is obscene. Such a practive would interfere with the competitive process, resulting in reduced quality of services, more one-size-fits-all in a system that is already severely lacking oversight.

    Why is there no money to care for the most severely disabled—intellectually, developmentally, medically, physically—the ones in the intermediate care facilities, but there is money for yet another law that will have questionable enforcement?

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