Families
ought to be part of decision-making
AS NOTED in Kevin Cullen's column ("Making
the wrong move," City & Region, June 30), Seven Hills
Pediatric Center is one of four pediatric-skilled nursing facilities
in Massachusetts that cares for children and younger adults with profound
intellectual and developmental disabilities with very complex medical
needs.
Seven Hills
is unique in that it offers clinically and technologically advanced
services in a home-like environment for those who require ongoing
intensive medical and nursing supports. Many of the individuals
who reside there are technology dependent, requiring ventilator
support, tracheostomies, feeding tubes, and other intensive medical
therapies. This environment fosters dignity and respect to the residents
and their families, with staff who are committed to providing excellent
and individualized medical, nursing, and educational care.
As a result
of a class-action lawsuit (Rolland v. Patrick), the Commonwealth
of Massachusetts and the Department of Mental Retardation plan to
move many of these young people to other settings, a plan that occurred
without prior knowledge or approval of their parents and/or legal
guardians. Certainly, the ideal is for people with disabilities
to reside with their families and/or within the community. However,
there needs to be adequate infrastructural support to assure the
well-being and safety for all, particularly those who are technology
dependent and require multiple medical therapies throughout each
day. One needs to trust that families who love and care for their
children are acting in their best interest and should play a primary
role in the decision-making process when it comes to a change in
the setting in which their children reside.
SANDRA
L. FRIEDMAN
Medical Director
Seven Hills Pediatric Center
State's
plan risks medical needs
AFTER MANY weeks of living in sleepless desperation after learning
of the state's plan to move most of our profoundly retarded and
medically fragile adult children out of the Seven Hills Pediatric
Center (formerly Children's Extended Care Center) at Groton, my
own and the other families concerned have finally seen a ray of
hope in the compassionate column by Kevin Cullen. What we need now
is for the public and the Legislature to ask the Department of Mental
Retardation to face the facts regarding our children's real needs
and the superb care they are receiving, instead of sentencing them
to early deaths in the name of an ideology (the group home movement)
carried beyond reasonable application, or worse still in order to
put more money into the pockets of the service vendors and real
estate developers.
LOUIS
PUTTERMAN
Concord
Unfair to assume smaller community will benefit all
THE ARTICLE "Making the
wrong move" by Kevin Cullen fully captured the sense of
anxiety and worry induced by the state on many of the parents and
guardians of severely disabled young adults. I have a 24-year-old
son, Andrew, who has not just lived, but also thrived, at Seven
Hills at Groton Pediatric Center for the last 4 1/2 years. After
a year long search for a nursing home that would provide the numerous
medical, physical, and occupational therapies that he needs, we
chose Seven Hills as the best nursing facility for our severely
brain injured son. Our family has never regretted that decision.
However, the Department of Mental Retardation, under the terms of
the Rolland v. Patrick settlement agreement, is operating under
the assumption that smaller community group homes are the preferred
course of treatment for all mentally challenged adults.
This is a ridiculously unfair assumption, and I,
along with many other members of the Seven Hills at Groton Pediatric
Center parents, guardians, and medical community will vigorously
fight to keep our severely challenged sons and daughters in the
safe, caring, and state-of-the-art medical facility that we chose
to be most appropriate for their many needs.
ELLEN
PATTERSON
Sherborn
Progress
is not made by uprooting patients
A BIG thank you to columnist Kevin Cullen for portraying one family's
quest to have their son remain at his longtime "home away from
home," the Seven Hills nursing facility in Groton. A large
group of residents at Seven Hills has been included, without their
guardians' consent, in the Rolland v. Patrick class-action lawsuit
settlement against the Department of Mental Retardation.
These families
chose Seven Hills specifically because of its excellent reputation
and services. Their children require a level of medical care that
is impossible to duplicate in the group home system, and these young
people receive nurturing care from longtime employees.
Now political
correctness has run amok in the Department of Mental Retardation,
and while so many wait for residential services, the agency takes
people who are already appropriately placed and tries to force them
into group homes, where they will inevitably receive lower quality
services from staff who may work there for only a year or two. This
is progress?
This
lawsuit was well intentioned, but it has become a numbers game.
The Department of Mental Retardation is forced by the court to place
a certain number of residents into group homes each year. How simple
just to take a bunch from one place at Seven Hills? DMR, the courts,
and Governor Patrick owe these vulnerable people better. They owe
them a thoughtful, individualized choice for their children.
COLLEEN
M. LUTKEVICH
Mansfield
Cost
effective? Yes, but families and patients pay the price
KEVIN CULLEN'S June 30 column "Making the wrong move"
sensitively portrays a family's anguish over the state's unilateral
decision to move their son, who has mental retardation, from his
longtime home. Just as longtime residents of the Fernald Developmental
Center have received excellent care there, Ed and Margaret Braga's
son, David, who also has cystic fibrosis, has received excellent
care at the Seven Hills Pediatric Center in Groton. The Seven Hills
facility, which was founded by Children's Hospital, literally saved
his life. Yet, just as it has done with the state-run Fernald Center,
the Department of Mental Retardation has made a decision over the
objections of family members and clinicians to transfer David Braga
and other residents out of Seven Hills and move them to smaller
group residences. In both of these cases, DMR has shown little concern
for the best interests of its key stakeholders - its clients with
mental retardation and their families. What DMR does appear to be
interested in is providing a minimal amount of statutorily mandated
care in the cheapest possible way to its clients by placing them
in settings with lower-paid and less well-trained staff. We recognize
that DMR and other state agencies are dealing with growing caseloads
and tight budgets. It is a daunting situation, but there are better
ways to proceed.
What is needed is a sincere attempt on the part
of DMR to reach out to those most affected by its facility-closure
policies, a reputable cost/benefit analysis of its closure policies
and the development, with the input of all stakeholders, of a comprehensive
plan for the future care for all residents in the commonwealth with
mental retardation.
MARILYN
MEAGHER
President
The Fernald League for the Retarded
Caring
Seven Hills staff met son's needs
I WAS touched yet saddened by Kevin Cullen's recent article revealing
the plight of the Braga family. My son too, is facing the same fate.
For years I have overseen my son's care which included many years
at home.
During
all of these years there have been countless visits to doctors and
hospitalizations at Children's Hospital, Boston, where we worked
to solve and treat his many complex health issues. His medical needs
have been carefully maintained by the professional and caring staff
at Seven Hills at Groton for the last 6 1/2 years. I cannot envision
his survival outside of this facility, where not only are his medical
needs met on a daily basis, but his emotional and social well-being
as well.
BARBARA
S. VOSS
Andover
What
this case really says about society
IN RESPONSE to Kevin Cullen's column, it is ironic that the Department
of Mental Retardation's attempt to protect those who cannot defend
themselves is putting the same population in jeopardy. A "clean
sweep" class action for the voiceless, although well intended,
is destructive at the same time. This case is a pure reflection
on what progress we, as social beings, are making. Hence, the survival
and undoing of itself, all at the same time. The battle will rage
on, therefore, we must all hope there will be grace and kindness
when we needed it most.
Online
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