Some cautions about the ‘Real Lives Bill’

(Cross-posted from The COFAR Blog)

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.