In May of this year, these families learned that their profoundly
retarded and medically fragile children and siblings may be forced
to move from an outstanding pediatric skilled nursing facility in
which all express unparalleled confidence. When the families opposed
the settlement agreement under which the Commonwealth committed
itself to carrying out these moves, they were told that they did
not understand the benefits of moving their children. When they
asked whether their rights were being violated, they were told that
they had no rights to determine where their loved ones are cared
for according to "well-established federal law." When
they asked to have their children removed from the so-called "plaintiff
class" that makes them part of the settlement, they were told
that the chances were slim, then waited to receive final denial
of their request from the presiding federal judge in Springfield
last week. And when they complained that no reasonable evaluation
could have concluded that their children would benefit from being
moved to small group homes, they were told that the Community Placement
List on which more than half of their children's names have been
placed is "only preliminary." This despite the clear wording
of the settlement agreement that anyone can read (at www.Rollandatreview.),
which says that the list embodies the state's judgment of who meets
the criteria to be moved and that it cannot be altered without approval
of the court monitor.
At the beginning of their nightmare, the families of Seven Hills
Pediatric Center patients assumed that a mistake had been made,
and that it would be corrected if those higher up in the state bureaucracy
only knew about it. But gradually they learned that what they are
in fact caught up in is the logical implication of a thrust for
de-institutionalization that appears to be the policy of the current
state administration from the top on down. When the original Rolland
v. Cellucci suit was settled in October of 1999, it included a clause
saying that the state was not required to move anyone "if the
person knowingly objects." With respect to patients too cognitively
impaired to understand the question being posed, objection by the
parent and legal guardian would presumably have performed the same
function, during that phase of the process.
Such a clause was left out of the settlement entered into by the
Patrick administration in May of 2008. The reason appears to be
the administration's ideology, on which basis it selected key officials
like DMR Commissioner Elin Howe and Assistant Secretary of Health
and Human Services Jean McGuire. As McGuire said to Globe reporter
Carey Goldberg regarding a related case (Boston Globe, 8-14-08),
"the suit's arguments jibed with the Patrick administration's
philosophy that whenever possible disabled people and the elderly
should live in the community." And McGuire gave an absolute
no to the Seven Hills families when she and Secretary JudyAnn Bigby
met with them on July 28, saying their loved ones could not be taken
off the Community Placement List until further evaluations are completed
at an unspecified time.
Is it possible that Gov. Patrick doesn't know of the anguish and
fear that his administration's behavior in the Rolland v. Patrick
case has imposed on families of extremely frail individuals for
whom there is no potential gain from forced movement "into
the community" and considerable chance of increased mortality?
Perhaps, but increasingly unlikely, given the light that the press
has begun to shine on the matter (Boston Globe, 6/30/08, 7/17 /08,
7/24/08, 8/17/08; Lowell Sun, 7/21/08, 8/2/08; The Standard-Times,
8/22/08).
The families of the Seven Hills Pediatric Center
residents have been told by both the Commissioner and the Secretary
of Health and Human Services that their decisions will not be changed.
So it would appear that only the governor can express compassion
for the families involved and bring some common sense to play. Individuals
too cognitively compromised to even be asked where they prefer to
live should not be threatened with removal of critical health supports
by decisions taken by a medically unqualified state agency, the
Department of Mental Retardation. And their families should not
be told to simply stay calm and count on their right to appeal decisions
they don't like in the state courts. Is the governor's own thinking
so blinded by the "into the community" ideology that he
too finds no room for common sense or compassion?
Online
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