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Some cautions about the ‘Real Lives Bill’

July 27, 2012 1 comment

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.

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The Telegram & Gazette makes the case for Glavin and Taunton State

July 11, 2012 1 comment

We often feel that we are alone in the battle to preserve the existing fabric of care in Massachusetts for the developmentally disabled; but every so often, we hear words of encouragement from people with no personal stake in the outcome.

Today’s editorial in The Worcester Telegram & Gazette is a heart-warming case in point.  We’re admittedly biased in favor of maintaining the long-time homes of residents of places such as the Glavin Regional Center in Shrewsbury, the Fernald Center in Waltham, the Templeton and Monson Centers, and Taunton State Hospital.  We think the Telegram & Gazette editorial makes one of the best cases we’ve seen yet for preserving both Glavin and Taunton State, both of which have been targeted by the administration for closure.

Thus far, the Legislature has come through for Taunton State, having approved funding to keep that facility running pending completion of an independent analysis of the cost of operating it.   Unfortunately, the Legisature hasn’t approved the same thing for the Glavin Center.  We think the Telegram & Gazette editorial should be sent to every legislator.  It’s reproduced below:

Wednesday, July 11, 2012

Worcester Telegam & Gazette

Compassion and the state

The disagreement over the closing of Taunton State Hospital and the effort to reverse closure of the Glavin Regional Center in Shrewsbury might seem to matter to only a few.

But such facilities ably serve some of our most needy individuals. They are staffed with gifted professionals. Most especially, they are places where hope pours in daily from family members and others who cherish their special someone who lives there.

No place that serves people with mental retardation or other serious developmental difficulties is or can possibly be perfect. But despite the holdover label of “institutionalized,” these facilities are alive with love.

Lawmakers should work to override Gov. Patrick’s Sunday veto of $5.1 million to keep Taunton open. And, in the case of Glavin, the Massachusetts Coalition of Families and Advocates Inc. is right to fight to keep the remaining 28 residents of the 63-bed center in their home. State officials intend for all Glavin’s residents to relocate by June 30.

Glavin, which opened 37 years ago, has enjoyed a strong reputation for being a good home and a good neighbor.

During a recent meeting with the Telegram & Gazette’s editorial board, the families of some residents joined other knowledgeable spokesmen in attesting to the appropriateness and cost-effectiveness of the care the Glavin Center provides.

Mr. Patrick envisions residents of Glavin and Taunton being served in group homes. For some, group homes work. For these residents, they do not. The reality is that development disability will never adapt to a one-size-fits-all solution. Medium and larger facilities where patients are more closely guarded have a vital role.

The administration argues that group homes will save money, but the money — which amounts to a tiny fraction of the state budget — is not the chief concern.

Rather, that must be the lives of needy individuals and the families who cherish them. The challenge is how to provide appropriate care, case by case. And the answer is that the Glavin Center and Taunton State Hospital are facilities that meet a need that will always exist, conferring dignity, safety and love on the most developmentally needy among us.

If these options cost a bit more than state officials, auditors, and some taxpayers would like, well, they are exactly what our tax dollars should be used for.

Massachusetts claims to be a caring state, a model for the health, education and welfare of its citizens. This is a moment for Mr. Patrick and lawmakers to prove that. Keep Glavin, Taunton and other such places open — welcoming places that work to care for those individuals and their families who need their services so desperately.

The fight for Glavin is winnable, Senator Brewer

July 2, 2012 5 comments

Despite the Patrick administration’s determination to close the Glavin Regional Center by next June, families of residents in the facility are prepared to wage a legal battle to save it, The Worcester Telegram & Gazette reported on Sunday.

The families are planning to use the same administrative and court appeal process to stay at Glavin that guardians of 14 residents of the Fernald Developmental Center have used to keep that facility operating more than two years past its scheduled closure date.

The appeal process is based on a state law, which says that the state must prove that a resident’s services and quality of life will be improved if he or she is to be transferred to another location.

“We’re not going to leave here without a fight,” Wilfred Dumont, the father of 28-year-old Stephen Dumont, a Glavin resident, told The Telegram & Gazette.  Dumont and his wife, Rosemary, are among several Glavin guardians who are actively opposing the transfers of their loved ones from the facility.

Not only has Glavin provided a high level of care that these families have not been able to find in the Department of Developmental Services community-based system, but Glavin has also provided a range of medical, dental and other services to community-based DDS clients.

As COFAR Executive Director Colleen Lutkevich stated in a letter submitted yesterday to the editor of the Telegram & Gazette:

…the reality is that Glavin is a wonderful community of residents, families, and staff.  Instead of closing this innovative state-of-the-art residence, built with such hope and promise not that long ago, we call on Governor Patrick and DDS Commissioner Howe to admit their mistake and cancel Glavin’s closure.  It is not only the morally right thing to do, it is good economics.

Ironically, the Glavin families, like their Fernald counterparts, have been forced to adopt the administrative appeal strategy because key state legislators have never supported proposals for either an independent cost study prior to closing those facilities or for legislative approval of the closures. 

Senator Stephen Brewer, chairman of the Senate Ways & Means Committee, is quoted in the Sunday Telegram & Gazette story as saying he wouldn’t support an independent cost study for Glavin this year because the fight to preserve the center “is unwinnable.”  He also raised a perennial red herring about the $10 million cost of operating Fernald for 14 residents (more about that below).

All along the way, however, Brewer has tried to play both sides of the fence, telling The Springfield Republican in May 2010 that he did support a cost study prior to closing Glavin and three other facilities, and saying:  “We’re in this to try to help the people stay in the places they call home.  Some of those people have been there 60 years.”   

It’s now clear that Brewer himself has personally played a major role in bringing about the closures of Fernald, Glavin, and the Monson and Templeton centers.  Meanwhile, he’s still trying to have it both ways.  In the debate over the current-year budget, Brewer supported an independent cost study prior to the closure of Taunton State Hospital, a Department of Mental Health facility.

As to the contention that Fernald and the other DDS centers have become too expensive to continue to operate, here’s what we’ve said many times: confirm that with an independent study.  No one in Massachusetts has done a comprehensive and independent study of the relative cost of care in the developmental centers versus community-based group homes.  That’s why COFAR began calling in late 2011 for such a study to be done by an accounting firm or other entity selected by the Inspector General.

If Senator Brewer and other opponents of the DDS developmental centers are  convinced it is more expensive to continue to operate them than to move everyone in them to community-based group homes, why do they oppose an independent study of that issue?

It is true that the cost per resident at Fernald, in particular, is currently very high.  But as DDS Commissioner Elin Howe herself has noted, the cost per resident of any institution that is being closed spikes as fixed costs are spread over a shrinking base of residents.  Let’s not forget, it was the administration’s choice, not the families’ and guardians’ choice, to move residents out of Fernald, Glavin, Monson, and Templeton.

The fact is that state funding for the four developmental centers has dropped by close to $70 million in the past four years.  Yet, funding for community-based programs such as transportation services, family supports, and day programs remains well below what it was in Fiscal Year 2009.  That the $70 million in so-called savings hasn’t helped those community line items should be of more concern to Senator Brewer than the temporary cost of continuing to operate Fernald or Glavin while guardians there exercise their lawful appeal rights.

Meanwhile, Brewer and other legislators should also be concerned about the loss of the intensive Intermediate Care Facility (ICF) model that is occurring as Fernald, Glavin, Templeton, and Monson are shut down.  ICF care conforms to federal standards that are much more stringent than the standards that govern community-based care.  This has real implications for care.

In their study of a major deinstitutionalization in California in the mid-1990s, Robert Shavelle, David Strauss, and Steven Day found that as of 1999, there had been 81 deaths among residents transferred from institutions to community-based group homes — a 47 percent increase in mortality over that expected in the institutions.  (The results were significant at the 95% confidence level.)

The California study concluded that the reasons for the higher mortality rate in the community system were the less intensive medical care and supervision available in the community than in the institutions in that state.

We should also respond to statements made by DDS Commissioner Howe in the Telegram & Gazette story on Sunday.  Howe said, among other things, that closing the developmental centers in Massachusetts follows a New England and national trend; that Connecticut has only one institution for people with developmental disabilities, and that none of the other New England states have any such facilities.

First of all, Connecticut currently has a total of six state-run ICFs that provide care under the same federal standards as Glavin, Fernald, Monson, Templeton and two other facilities in Massachusetts.  The Connecticut public ICFs include the Southbury Training School and five regional centers.

In addition, Connecticut has 69 privately operated ICF facilities, and private ICFs also exist in Maine, New Hampshire, Rhode Island, and Vermont.  Massachusetts, however, has no ICFs outside of six state-run facilities, four of which are targeted for closure.  

While the national trend has been to move people from large, state-run institutions to smaller, privately run facilities, the ICF model is not being phased out nationally as it is in Massachusetts.   More than 7,000 public and private ICFs operate nationwide, according to the American Health Care Assocation.  For the record, we have long supported the downsizing or “rightsizing” of the remaining developmental centers in Massachusetts.  What we oppose, as noted, is the phase-out of the ICF model. 

We also prefer that the ICFs continue to be state-operated because state workers tend to receive better pay and benefits, and consequently have less turnover, than those in privately run facilities.

Howe also maintained that the community system and two remaining developmental centers in Massachusetts “are strong enough to meet all of the individuals’ needs.”

Tell that to Wilfred and Rosemary Dumont, who were unable to find a community-based facility that could successfully treat Stephen, who had a habit of opening up a permanent wound on his head by repeatedly banging his head on hard objects.  Tell that to Brad and Joan Douty, whose daughter Anna hit herself in the head so often while living in a group home that she eventually detached the retinas in both eyes and is now blind.

Both Stephen Dumont and Anna Douty have been living successfully at Glavin for several years.

Or tell that to Roland Charpentier, who moved his brother Richard out of Glavin and into a non-ICF group home on the Glavin grounds a few years ago.  After his brother contracted pneumonia four times, Roland had him moved back into Glavin.

“My intention is to keep Richard here (at Glavin) no matter what the state wants to do,” Roland Charpentier told The Telegram & Gazette.  “I’m going to stand and fight for Richard’s rights.”