Compelling testimony in support of a facility cost study

(Cross-posted from the COFAR blog)

Introductory note:

A proposal for an an independent cost study prior to the closures of the Templeton, Monson, and Glavin developmental centers may have run into a legislative roadblock last spring, but the idea isn’t dead yet.

State Representative Anne Gobi of Spencer is continuing to push for the measure, which was shot down by the legislative leadership during the state budget debate in April and May.

A bill filed by Gobi, which would specify that the study be done by an independent, non-governmental entity appointed by the state Inspector General, was heard by the Committee on Children, Families, and Persons with Disabilities on Tuesday, July 19.

“I’ve heard from officials who would like to close these facilities,” Gobi stated in a press release, “but I have also spoken with the families of patients at these centers – and they have presented evidence that suggests that there would be no cost savings with closures, yet there would be a reduction of services.

“Frankly, I think it is best that an independent study be conducted before any further decisions are made,” Gobi added.

The Patrick administration has produced two virtually identical cost studies in closing Templeton, Monson, and Glavin, which have concluded that  closing the centers will save more than $20 million annually.   However, the administration’s cost analyses have been seriously flawed.

In testimony submitted on July 19 to the Children and Families Committee, COFAR noted that the administration has thus far been asked to produce after-the-fact analyses of the costs and benefits of a previously announced policy of closing the centers.  An independent review of this policy is needed.

The most compelling testimony in favor of Gobi’s bill was not about the cost issue per se, though, although cost is always present as a backdrop to any dicussion about public sector services.  That compelling testimony came from family members of developmental center residents.  Here is one example of the testimony submitted to the Children and Families Committee:

…I would like to share with you the story of our brother, Danny Healey, and what his life at Fernald meant to him and to our parents.  I realize that this letter is long and I appreciate your taking the time to read it.  I have also enclosed a copy of Danny’s eulogy, which I trust will offer further proof of the benefit of residential settings for some people.

Danny was diagnosed with Down Syndrome and a host of other problems months after his birth on June 14, 1958.  For fourteen years he lived in a two-family house in Somerville with his parents, grandmother, great-grandmother, and four siblings.  A great-aunt and her husband lived in the apartment downstairs.  Unable to speak, feed himself, drink from a cup, or use the toilet, Danny needed help with every aspect of life. Our parents cherished him and, despite the constant care that he required, they planned to keep him home forever.

Danny’s doctor, however, pointed out that his self-destructive, repetitive behaviors (gouging his ears, banging his head against the wall and windows, etc.) could lead to permanent injury or even death.  He suggested firmly that Danny would be better served at a state school like Fernald.  My parents were devastated.  How could they send their precious child to strangers at an institution known to provide inferior care?  But they trusted the doctor, so with heavy hearts they enrolled Danny at Fernald.

Two wonderful people gave them hope that they had not consigned their son to hell.  The first was a middle-aged direct care worker, Mary Meaney, who had been sent to Fernald as a child and who had never known any other life.  Unlike Danny, who was best served in a residential setting, Mary was someone who could have been well served in a community based group home.  She promised my parents that she would protect Danny as if he were her own child, and that is what she did, for years, until he moved to Cottage 13, where he remained, surrounded by people whom he loved, until he died.  The second blessing in Danny’s life was Judge Tauro, who put the entire school under judicial oversight.  His action was the catalyst for a series of positive reforms at Fernald that allowed Danny to live there happily and safely for 28 years.

The direct care staff and professionals at Fernald were among the finest individuals I have ever been privileged to know.  Their respect for the residents was awe-inspiring.  Together they created genuine homes for some of the most developmentally challenged and vulnerable citizens of the Commonwealth.  Danny thrived there, to the best of his limited abilities.  Every year when we attended his annual evaluation, we would leave filled with admiration for the staff who gave unstintingly of themselves for the benefit of the residents.  Because my parents didn’t drive, my siblings and I would pick up Danny for regular home visits throughout the years, and at the end of his life, when it was difficult to care for him in our homes, we would visit him at Fernald, drive him around the campus, then feed him his favorite treat of cake crumbled up and mixed with pudding.  For twenty-eight years at least one of us was at the school almost every week, and we can attest, from extensive personal experience, that for people like our brother, facility-based care is the optimum choice. 

As Danny weakened in the last years of his life, the rumors about Fernald’s closing became more strident and frequent.  My parents were in a panic.  They knew that Danny would never be able to function in a group residence and that for him the only alternative was a nursing facility, where he would pine for his friends and caregivers.  They actually prayed that Danny would go to God before he had to endure such a fate.  As Danny’s neurological condition worsened, the staff provided loving and attentive care until he slipped away on January 15, 2001.  At his wake and funeral, which were attended by hundreds of people, we celebrated his life as well as the devotion of those who provided him with such a rich and nurturing environment at Fernald.  And we were grateful to God that we never had to watch him wither away in a nursing home setting where his physical and emotional needs could never have been met.

I grieve for the families of profoundly limited individuals like Danny who watch helplessly as facility-based care is eliminated for their loved ones.  I implore you to consider the value of such an option for those with severe medical and intellectual disabilities.  I know firsthand what a difference it made in Danny’s life and I hope that it can be available for others who need it.

Thank you.

Sincerely,

Margaret Chisholm

 Another example of testimony submitted on Tuesday to the Children and Families Committee:

I am guardian for my third cousin, Thomas Doherty (DOB 2/25/2951), a native of Woburn, MA. Tommy has lived at Templeton Developmental Center (TDC) since 1973, when he turned 22 yrs.  and was discharged from a residential program where he had been since age 10.

To summarize, Tommy has been in care for 50 years, 38 of which have been at TDC, which Tommy refers to as “my school.” Tommy, an only child, was cherished by his parents, who struggled to provide safe, competent and nurturing care for their troubled, developmentally disabled son who could not be managed in their Woburn community in the 1950s and 60s.  When they found Templeton, Tommy and his parents were relieved that his needs could be met in such a caring, state of the art facility with strong vocational, behavioral and physical support provided by a dedicated staff.

Throughout his adult life, Tommy has worked in the cow barn under supervision of a watchful staff. He lives with several other men in a lovely cottage, and his medical needs, which include catheterization twice daily and administration of psychotropic medication, are provided without incident. His nutritional needs are monitored, and his diet is adjusted frequently. Tommy knows staff and residents, making frequent visits to “favorites” each day.

When a beloved staff member died, Tommy delivered a heartfelt eulogy. Tommy, cognitively impaired and emotionally disabled, enjoys loving and meaningful relationships with his extended family. Tommy is puzzled by the loss of friends as they are moved from their TDC home, and he is most anxious about his own fate. His mother, prior to her death 14 years ago, requested that I be Tommy’s guardian. This is an honor, with much gratification from my relationship with Tommy. His joy in seeing cousins, however distant, is disarming. His memories of his parents are filled with delight. Tommy’s pleasures are simple…the Red Sox, the Beatles, his picture albums, a good day at work, coffee, a cigar now and then, and his home at TDC.

Mary Ann Ulevich

One more example from a non-family member:

 My name is Mark Zanger. I live in Jamaica Plain and work as a Family Partner in mobile crisis intervention on mental health. I wish to register my support and evidence on behalf of H1859, requiring a study before closing the Glavin, Monson, and Templeton Developmental centers, and for S28, requiring the continuing use of state property at Templeton for the care and education of persons with intellectual/developmental disability.

I do not have a relative with ID/D, but became familiar with these
facilities while working for the Coalition of Families and Advocates.  As newsletter editor, I visited all six developmental centers then in operation with families and met with staff and residents…

Massachusetts has capacity for more than 100 adults with
MR/MH diagnoses at the Glavin Center, a modern facility built and staffed for that purpose. It was never an overcrowded “state school” and families there were not plaintiffs in Ricci v. Okin, and residents are not Ricci class members. The family members I met there have similar stories — their loved one was dually diagnosed as a child in the 50s and 60s and 70s, poorly served by the mental health systems of that era (which relied on talk therapy and crude medication for a population which is not often articulate about feelings or side effects), were not successful in the new group homes, and by enormous family efforts and political interventions were able to secure a place
at Glavin, where their loved ones have thrived and recovered with comprehensive and specialized treatment. Some Glavin residents returned to the community every year since it was founded, but in recent years people with more complex issues have failed expensively to make such moves.

Until higher level specialized mental health services for persons with ID/D are developed and available across the state, the Glavin residents cannot be safely or economically supported in the general community or even in state operated group homes, except for a few just off the Glavin property which rely on back-up services from the regional center.

I believe that these same arguments apply substantially to the Monson Center, specializing in MR complicated by seizure disorders, and even more so to the Templeton facility, specializing in persons who might otherwise be imprisoned. Templeton is a beautiful place, a working farm with meaningful work much enjoyed by the residents, a property long dedicated to the support of persons with ID/D, and one with little potential as commercial real estate — another tactical consideration that must be brought to light if the legislature is to make wise decisions.

Many states which are reducing or eliminating
other forms of congregate facilities have in fact invested in and
expanded those, like Templeton, with a mission to serve “forensic
cases.” Some of these individuals will be in secure treatment whether DDS provides or not, and the annual cost of a prison bed (not reimbursed by Medicaid or SSI) in Massachusetts may be larger than the state contribution to an ICF/MR bed at Templeton, Glavin or Monson.

It is the complexities of social accounting which drive my support for Rep. Gobi’s bill, which I personally would like to see amended to have the closure studies done independently. Even before I followed this question closely, wildly differing cost estimates, per person or per facility, were published periodically. A collection of these estimates over time would confound a Madoff accountant. On the snowy weekend of the Governor’s announcement of the plan to close four facilities, his press release included two different figures for the annual savings
anticipated, and no reconciliation.  A commission appointed by
Governor Romney likewise issued several conflicting estimates.

The administration has a quiet agenda to shift all state human services to Medicaid, Section 8, Food Stamps, SSDI, SSI and other federal budgets or cost shares. Leaving aside the intention of both major parties in Washington to cut Medicaid in the coming years; leaving aside the populations entitled to services who are not eligible for Medicaid or other federal services; leaving aside the dilution of specified comprehensive services under Medicaid’s ICF/MR standards; leaving aside the social accounting of what families must give up to keep multiply disabled people at home,  accurate and comprehensive accounting of the costs of evicting and relocating  these long-termresidents from familiar homes has never  been placed before the Legislature or the public. There are individual cases and academic studies indicating that there are few if any savings to the taxpayers.
There is growing public impatience with the outsized salaries paid to private contractors when compared even with the generous benefits of veteran state managers. There is accumulating anecdotal evidence that the land purchases and contracts to build new group homes to replace state facilities, some old and decaying, some reasonably modern and efficient, are not untainted by political dealings and overpriced bailouts in the acquisition and building business — entirely separate
and obscure expenditures of low-income housing loans outside the DDS budget.

 In several instances, anecdotal but indicative, persons have
been moved from facilities to group homes shortly before their deaths, wasting considerable sums to break up relationships and disorient people who might have been permitted to live out their lives in longterm homes.

…I would like to end with two overarching reasons to study carefully the closing of three more state facilities for people with ID/D (and in my own advice, not to do so), and to specifically reserve the property at Templeton for the future needs of this population.

The first reason is demographic. According to the Coleman Institute “State of the States” reports, more than half the clients of DDS are living with parents now 60 years old or older. This is a demographic triple-whammy (better life expectancy for disabled people; the baby boom caretakers aging; the baby boom consumers also aging into increased disability) which has already gridlocked DDS residential services. This year’s budgets do not fully cover residential services for the most disabled youth turning 22, and ArcMass has suggested a supplemental budget request for them.

To see the housing shortage issue in the most realistic terms, it is
important to compare the absolute number of persons served by DDS with the predicted number of qualified people in the Commonwealth, based upon the IQ 70 definition, two standard deviations from mean IQ.  The math would suggest that DDS has reached fewer than half the eligible individuals. There are some life expectancy reasons to assume that the reality is a little better than that, but there are still tens of thousands of disabled people outside the gates (perhaps fully as many as double the present enrollment if one adds in the barely ineligible, a fatter slice of the bell curve).

Some of these people are in nursing homes despite the Rolland case, some are in prisons, where DDS has no outreach; many are evident in any visit to a homeless shelter; some are transient, some are enslaved (as we learned in the “Raynham House of Horrors” case in the late 1990s); probably the largest unserved
group are quietly supported in homes and families, often those of
immigrants and minorities, to which there is no outreach, or where government services are unknown or culturally stigmatized.

Our team periodically finds children and youth in all these invisible categories, and they too are part of the reason the Legislature needs careful study before closing residential options at any level.

This is simply not the time to close any viable residential options
for people with ID/D, and certainly not the ICF/MRs supported by hundreds and hundreds of families who struggled to obtain such excellent placements for their loved ones.

 The second overarching reason to study facilitiy closures, to delay and avert facility closures, and to secure the permanent use of the Templeton property is the proven mortality that ensues when very disabled people are moved from sheltered settings into “community settings” with increased transportation, unfamiliar and rotating staff, and waits for use of the group home van for medical appointments. You can read a summary of studies of these dangers in the records of Massachusetts by former US Attorney Michael Sullivan that I wrote when working for COFAR at this Internet address:
http://www.cofar.org/documents/safetyfacts.pdf

The definitive Shavelle et al study of de-institutionalization in
California is footnoted in that article. Shavelle found mortality 47% higher than predicted even after throwing out deaths within six months of moving, to avoid the controversy over “transfer trauma.”

The most recent international meta study, by Kozma et al, advocates of community-based treatment, freely admits that outcomes (including mortality) remains one of three (out of ten examined) areas in which facility treatment remains superior to existing community-based systems studied. The other two areas where community systems all over the world are falling short are “challenging behaviors” and “overuse of psychotropic medication.” (You can read the full text at
http://www.les-pilotis.be/IMG/pdf/0906_AJIDD_Outcomes_in_different_residential_settings.pdf)

I am fortunate in my job to wrestle small problems one family at a
time. I do not envy the Legislature its choices in this difficult
financial environment. We must all be penny-wise. But this is exactly when an independent study of a key decision in the largest human services budget is penny-wise, shilling-smart, and not a bit pound-foolish. To steal from the most vulnerable people served by the Commonwealth is not the right way to get through a budget crisis, even one of long duration.

Why study what has been studied before? So we don’t have a concrete block or a lamp falling on someone’s car. So we
don’t parole killers who kill again. So we don’t have another Raynham House of Horrors