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residents fighting eviction from the Lowell Sun |
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"Offering Up The Most Helpless"
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The
Lowell Sun Last Updated 8/02/2008
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by
Louis Putterman |
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GROTON
--Three months ago, parents and guardians of 51 patients at one of
the state's and nation's finest facilities for the long-term care
of profoundly retarded and medically fragile children were shocked
to learn that their loved ones, who have surprised doctors by living
into adulthood at the facility, were to be victims of a lawsuit that
should have nothing to do with them. They had been targeted by attorneys
in a suit against the state (the Rolland suit) for possible forced
movement into more "community-like" settings. These parents
and guardians were far more shocked, however, to learn that rather
than opposing the idea, an assistant attorney general of the commonwealth
acting on behalf of Gov. Deval Patrick had agreed to it and had handed
a list of 31 of their loved ones over to federal Magistrate Judge
Kenneth Neiman, listing them as among the Rolland class members deemed
suitable to be moved during the next four years.
The parents and guardians knew much that Judge Neiman and state officials
did not know. Had they spent time at the Seven Hills Pediatric Center,
the judge and officials might have realized how improbable it is that
any of these patients can benefit from being moved into group homes,
and how likely it is that virtually all would have their lives dramatically
shortened by such moves. They would have understood that none of these
individuals can speak, none have the cognitive level to grasp or express
the ideas of normal human communication, all are non-ambulatory, dependent
on nursing care for every function, and in need of constant medical
monitoring by doctors as well as nurses. They would have seen that
all receive day programming in an on-site school and are involved
(passively and in their wheelchairs, of course, since they have no
purposive muscle control), in after-school activities such as musical
performances. They would have found that they make as many nurse-attended
off-site trips as their health allows, and are cared for by a dedicated,
respectful staff of nurses' aides, nurses, therapists and doctors,
with low turnover.
Instead, the judge, attorneys, and officials of the Department of
Mental Retardation did not visit Seven Hills Pediatric Center before
approving the plan. And despite the fact that their agreement lists
as criteria for consideration "opportunity for meaningful participation
in aspects of community life," "presence or absence of an
advanced medical condition that would have a significant adverse effect
on the individual's safety," "the presence or absence of
fragile health condition such that the main supports are nursing services
for medical and basic needs," and "the presence or absence
of a substantial risk of substantial transfer trauma which cannot
be mitigated by individual clinical intervention" -- any one
of which should have disqualified the Seven Hills patients from the
Community Placement List -- DMR chose not to conduct serious evaluations
when drawing up its list for Judge Neiman and the court monitor. Then
the judge accepted the benevolent-sounding argument of DMR Commissioner
Elin Howe that "ability to enjoy the same kind of quality of
life and integrations with their community that all of the rest of
us that live in the Commonwealth do" is among "the benefits
to individuals of life in the community."
How could the DMR have judged 31 Seven Hills patients to be good candidates
for movement "into the community" when its own staff had
concluded annually up to the present that each was most suitably placed
where they are and had noted this was the wish of guardians? And how
could the judge assign decisions on who to move, among those already
certified for skilled nursing care through an intensive Medical Review
Team process involving multiple medical disciplines, to an agency
whose staff has no medical training? The language of the settlement
agreement suggests that DMR agreed to sacrifice these 31 and other
profoundly retarded individuals in order to win time from the plaintiffs'
attorneys, who earn hefty sums burnishing national reputations as
de-institutionalizers. Offering up these 640 individuals, including
our loved ones, on a fixed timetable was easier and less expensive
for DMR than achieving the higher standard of care dubbed "active
treatment" required by federal law. The settlement allows this
standard to be postponed for up to four years while transitions are
under way.
My daughter cannot speak for herself. She can't know that the rest
of us are told that we live a country in which the rights of the individual
are protected. She'll never have to try to understand why the government
of her state packaged her and 759 individuals into a judicial class
from which they are not free to exit, and how it decided, without
first conducting serious medical evaluations, that precisely 80 percent
of them, a number plucked from thin air, will benefit from being moved
from their current homes. Are such agreements constitutional? Does
the public abide by governments that enter them?
Pretty language pretending that it is all for the benefit of the patients
may have fooled Judge Neiman, but investigation makes clear that it
is all about saving the state trouble and putting more money in the
hands of group home advocates. The state will save money because our
children will not live long in group homes. Some funds can then be
transferred to programs for less profoundly retarded individuals.
Quite possibly more will benefit than will die, and public discussion
of such issues is certainly permissible. But let's not pretend that
it is done in the name of the victims; let's call it what it is: a
sacrifice of the most helpless.
Louis Putterman is the father of a 24-year resident and patient at
Seven Hills Pediatric Center and a professor of economics at Brown
University.
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