COFAR blog

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.