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Why we won’t be at the bill signing at Fenway Park
Tomorrow, Governor Patrick will be at Fenway Park for the ceremonial signing of three pieces of legislation that are intended to make major changes in the care and services for the developmentally disabled in Massachusetts.
Many advocates will be there, but many if not most of those in attendance will be corporate providers to the Department of Developmental Services, who played key lobbying roles in the drafting of each piece of legislation last spring. As a result, as we have pointed out, each of these new laws (because Patrick signed them for real in August) is flawed in a major way.
There really is no reason to celebrate unless and until changes are made in the laws, so we won’t be at the event tomorrow. In a nutshell, here are the problems with the laws:
1. National Background Check law: The law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI. Those requirements are long overdue, but they will be further delayed under the new law.
The fingerprint requirements will not be phased in under the law for all current employees in the system until January 2019, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained.
COFAR and the VOR, a national advocacy group for the developmentally disabled, sent a joint message to lawmakers this week that states: “Much harm can be done to vulnerable people due to the delayed implementation and the ambiguous language that we hope was not the intent of the Legislature.”
When COFAR contacted the Legislature’s Judiciary Committee last summer to ask why the committee had approved the delays and the ambiguous provision in the new law’s requirements, a staff member referred us to Johnston Associates, a Beacon Hill lobbying firm. A member of the firm said providers and some other advocates had pushed for the delays. No one could or would give us an answer as to why language was inserted that appears to allow the hiring of employees before their background checks are done.
2. The ‘Real Lives’ law: This legislation had been pushed for years on Beacon Hill by the providers. The stated intent of the measure is to introduce “person-centered planning” into the DDS care system by allowing each DDS client to “direct the decision-making process” and manage their own “individual budgets” for care.
In the wake of criticism earlier this year from COFAR, legislators removed a provision from the bill, which would have named the Association of Developmental Disabilities Providers and the Arc of Massachusetts to a board that would advise DDS in developing the person-centered planning system. Another provision that was thankfully removed would have established a “contingency fund” to compensate providers that lose funding when clients move out of their residential facilities.
But the new law still raises a number of concerns, including providing what appears to be only a limited role for guardians and family members in the person-centered planning process. The law also introduces a central role in the process for vaguely defined “financial management services” and other privately run entities.
In a joint statement this week, the VOR and COFAR called on legislators to “ensure that vulnerable individuals with intellectual and developmental disabilities have the support of legal guardians, when appointed, rather than financial managers or independent facilitators” in undertaking person-centered planning.
The joint statement also urged legislators to add a provision to the law ensuring that persons seeking DDS services would have an explicit choice among a range of care options and settings, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. State-operated care is often not presented as an option to people seeking DDS residential services. Those persons are instead presented only with the option of corporate provider-operated residential care.
3. The DDS eligibility expansion law: This legislation is intended to fill a major gap in DDS care in Massachusetts by extending eligibility for services to people with autism and two other specified disabilities known as Prader-Willi Syndrome and Smith-Magenis Syndrome.
Until the enactment of this law, DDS had restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test. That left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
However, in specifying three developmental disabilities that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that often result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. The new law was the product of closed-door negotiations among legislators, administration officials, and selected advocacy organizations.
In addition to changing that eligibility standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services. The commission will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
The VOR and COFAR urged legislators this week to make changes in the law “to better identify and serve eligible individuals in need of services and supports.”
In sum, while these new laws have many well-intentioned supporters, major changes are needed in each piece of legislation to enable it to fulfill its purpose and prevent it from doing more harm than good. It is not yet time for everyone to pat themselves on the back as will no doubt be happening tomorrow at Fenway Park.
The House lets down the most vulnerable
Have our legislators forgotten about the most vulnerable people in our society?
Unfortunately, that’s the message we’ve taken away from last week’s actions by the House on the state budget.
First, we urged legislators to approve an amendment calling for a comprehensive, independent study of the Department of Developmental Services system, along the lines of a similar study that was approved last year of the Department of Mental Health system.
Among the questions we think need to be examined are whether the ongoing privatization of services to people with developmental disabilities is really resulting in improved care. Or is this trend simply padding the ample salaries of the executives of the hundreds of corporate providers that contract with DDS?
We also urged legislators to approve additional funding to prevent the layoffs of state service coordinators, who make sure that people in the DDS system are getting the services they need. And we asked for additional funding to prevent the possible closures of state-operated group homes, to which many former residents of state developmental centers are being sent as those centers are closed down.
The House rejected all of those amendments. But they did pass an amendment that provides all kinds of goodies to the corporate providers, including a state subsidy if residents of their group homes opt to leave those homes. That amendment will implement the so-called ‘Real Lives’ bill, without bothering with the need for a public hearing.
Could all this have anything to do with the fact that legislators nowdays seem to act solely in the interest of those who contribute the most to their political campaigns? Is there anyone out there who still doesn’t believe that’s the way our modern “representative” system of government works?
Apparently, lawmakers don’t feel under much of an obligation anymore even to fulfill promises made to those who don’t have political clout on Beacon Hill, or Capitol Hill for that matter.
What else are we to make of the virtual promise that state Representative Patricia Haddad, a leader in the House, who spearheaded last year’s legislation to study DMH, made to support the DDS study?
In a meeting with families of residents of the state-run Glavin Regional Center in September, Haddad had this to say about the proposed DDS study, which would have included a study of the closure of Glavin itself:
“Someone has to be the first to say we’re not afraid to have an outside study done to tell us what’s wrong and what’s right,” she said. That day, she also said a number of other things that the Glavin families desperately wanted to hear from her, including the statement that “there are more horror stories than good stories” in the privatized system of DDS care.
It initially came as a shock to us, therefore, when we found out just before the budget debate last week that Haddad had declined even to co-sponsor the amendment to undertake that outside study of DDS. Maybe she truly feels that someone has to be the first to say we’re not afraid to have the study, but it wasn’t going to be her.
Why won’t legislators like Haddad support these critically important initiatives for our most vulnerable residents when push comes to shove? Is there anyone who doubts that we need to re-examine the DDS system? It is a system in which, as Haddad herself said, there are often more horror stories than good stories.
As the state has increasingly come to rely on corporate-controlled care for people with developmental disabilities, the waiting list for services only appears to be growing longer. It’s a system in which the state does a mediocre job at best in monitoring the care provided in thousands of dispersed residences whose staff are largely poorly paid and do not receive adequate training.
It’s a system that is beginning to resemble the “warehouses” of yesteryear, when thousands of people with developmental disabilities were packed into institutions that did not have the staff or resources to care for them. Now, they’re simply packed into corporate-run group homes, which don’t have the staff or resources to care for them.
When will our elected leaders wake up to this and care enough to do something about it?
Some cautions about the ‘Real Lives Bill’
We strongly support giving intellectually disabled individuals and their families and guardians as much choice as possible in the care and services they receive.
We’re not convinced, though, that proposed legislation dubbed “The Real Lives Bill,” does that. The bill (H. 4167) is scheduled to reach the House floor for debate this week.
The language of the bill is intended to promote “self-direction” by persons with disabilities, which is a laudable goal. In a Globe column yesterday, Joan Vennochi maintained that The Real Lives bill is about:
…recognizing the rights of people with disabilities to make choices about how and where to live — and not limiting them to choices made by someone else.
Vennochi made the following point in arguing that there is a need for the bill. She stated:
The current system leaves decisions about how money will be used and for what purpose with providers. If a specific program doesn’t work out for a particular individual, it’s difficult to get out of it. Providers are not eager to lose the revenue stream represented by an unhappy user.
We respect Ms. Vennochi as an excellent columnist. But we are concerned that while this bill might appear to give clients of the Department of Developmental Services the power of choice in providers, it is vaguely drafted and might well have the opposite effect of giving the providers more control over people’s services and over state funding than they currently possess.
At the very least, the bill doesn’t appear to provide for sufficient oversight of its proposed components, including something called “service brokers” and an ill-defined “contingency fund” that would be partly managed by the providers themselves.
Also, we would disagree that the current system leaves it up to the providers about how money will be used and for what purposes.
On that latter point, we would note that decisions about uses and purposes of funding for services are supposed to be specified in an individual’s Individual Support Plan (ISP), which is developed with the input of the individual and his or her guardian, family members, and clinicians. ISPs are required to be rigorously overseen by the DDS. In that sense, therefore, we’re not sure why this bill is needed.
Secondly, before getting to the service brokers and the contingency fund, we would note that while the bill talks about “self direction” for DDS clients, it doesn’t define that term very clearly. For instance, one of the definitions given in the bill of self-direction is:
…the individual is central to and directs the decision making process that will determine which supports are utilized
All well and good, but once again, that is already the function of the ISP process, which is much more carefully spelled out in DDS regulations.
It is also a little puzzling that this bill speaks almost exclusively in terms of the individual DDS client as “directing” services, with almost no mention of family members or guardians. The bill goes as far as to say that individuals with “profound intellectual impairments” are “eligible for self-direction.”
We would note that the courts have in most cases determined that persons with profound intellectual impairments require guardians. It is hard to conceive of people with profound levels of intellectual disability as planning and directing their own services.
As noted, we have some concerns about the language in the bill directing the hiring of “service brokers” who would “assist in the development of a plan of service” and “in the purchase of services” for participating individuals. The bill doesn’t specify who these service brokers would be or how much they would be paid. The bill does state that the individual client can choose a service broker; but, once again, the bill doesn’t appear to give that choice to guardians or family members.
Would these service brokers, by the way, be hired in addition to service coordinators, who are already employed by DDS to help plan, manage, and coordinate services to clients in the DDS community system? That would seem to be a needless duplication of services and attendant costs.
In addition, the bill states that DDS will establish a “contingency fund” to “assist individuals in need of services,” among other purposes. It doesn’t specify how much would be in this fund, but states only that it must contain “sufficient funds for individuals utilizing self-determination and provider mitigation throughout the fiscal year.”
This particular language about the contingency fund strikes us as overly vague, and we are not clear what is meant by “provider mitigation.” It’s not defined in the bill.
Moreover, the bill leaves it up to DDS to develop policy regarding the contingency fund with the assistance of a Self-Determination Advisory Board. That Board would be comprised of, among others, members of the Massachusetts Association of Developmental Disabilities Providers (the ADDP) and the Massachusetts Arc, whose funding comes, to a significant degree, from state contracts. Ms. Vennochi reported that the ADDP is on board with this bill. That is not surprising, considering the key role they would apparently play in setting up this funding source.
We would note that while the bill does contain language that would allow individuals to change service providers if they aren’t happy with their care, we’re not sure that language represents a change from the current situation in Massachusetts.
If an individual or his or her guardian isn’t satisfied with a residence that person is living in, they can ask for a change right now. The bill says DDS must make a good faith effort to assist the individual in finding a suitable alternative, but we would hope that’s the case now.
In sum, we would agree DDS clients need to have more choice in their care and services. But this bill would appear to set up a system that lacks sufficient definition and oversight. We would urge legislators to go back to the drawing board.
COFAR blog 