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Deinstitutionalization
update
The issue of deinstitutionalization has heated up once again with a
slew of developments in recent months, including court rulings, the Patrick
Administration’s landmark announcement of its closure plans, legislative
hearings and political wrangling, all taking place against the backdrop of an
economy in the midst of a historic meltdown.
On May 12, families across the Commonwealth and leading advocacy groups
who support the Governor’s Institution Closure Plan testified at State House
hearing before the Joint Committee on Children, Families and Persons with
Disabilities.
Among those who testified was Julie Peck, whose grandson and adoptive
son has complex medical needs. In the past an institution may have been his
only option. “Life in the community means that despite some disabling
conditions, he is NOT stuck in his home!” Peck says. “He goes to a unique day
program almost every day, goes shopping with his buddies, goes to community events,
and gets more hugs and kisses than most guys. The Meridian
folks (his residence provider), DDS, and the nursing organization that provides
almost all his nursing care have done a wonderful job of knitting together the
services and supports he needs…It has been almost a year now and Matthew has
completely adjusted to his new life.”
Sal Salamone (who did not testify) has talked about his decision to
help his sister move recently from Fernald to the community. “It’s the best
move we ever made,” Salamone says. “Her quality
of life is so much better.” Salamone tells how he and his family initially had joined
with the Fernald League in opposition to closing the institutions and helping
his sister find a community placement. But after hearing about new homes, the
family decided to see what community living was all about. Now, after having
lived at Fernald for 40 years, Salamone’s sister – who is 76 years old, unable
to communicate verbally, uses a wheelchair and needs assistance throughout the
day – is thriving at her home in Bedford.
“She’s happy,” he says. “Judging from the staff at Bedford, everybody would benefit from
community living.”
Another family member, Paula Ceiplik, whose son Kenny had lived in a
nursing home for almost 20 years, stated: “I cannot describe in words how WONDERFUL the outcome of this move has
been. Kenny is happier, better cared for
and has all of his medical, personal and emotional needs met in the community.”
Most concerning is that all the staff at the facility where Kenny lived
discouraged his family from exploring community options. According to Paula, one of the professional
staff stated, “a community home would not know how to deal with Kenny’s
behaviors or medical needs and at the first sign of challenging behavior, they
would probably ship him to a psychiatric ward.” After years of fighting movement to the community, Paula and her family
changed their mind. They now say they are glad they did.
In December, following an appeals court ruling, the Patrick
Administration announced its plans to close four of the state’s six
institutions -- Fernald, the Glavin Regional Center in Shrewsbury, the Monson
Developmental Center in Palmer and the Templeton Developmental Center in
Baldwinville -- over the next four years. Virtually all advocacy groups (except
state school parents’ groups) support the move to close institutions. The Arc, Massachusetts Developmental
Disabilities Council, Massachusetts Families Organizing for Change, the Disability Law Center
and Massachusetts Advocates Standing Strong all have taken formal positions for
closure. The trade organization for DD
providers of service, ADDP, also has taken this position.
Massachusetts has six of the seven public
institutions for those with developmental disabilities remaining in New England despite a decades-long national trend away
from institutionalization and toward community-based living situations. Massachusetts’
institutional system housed 10,000 individuals at its height. Today, fewer than 900 individuals are served
at the six remaining facilities. Studies have repeatedly and overwhelmingly
shown that people who live in community settings or move from institutions to
community settings have better “outcomes” – improvements in overall adaptive
behavior, self-care, academic skills, and vocational skills – than those who
live in institutions.
Even beyond the benefits for those moving out of institutional
settings, the Governor’s closure plan allows for better use of limited state
resources, generating $13 million in savings in FY’10 and $40 million annually
going forward. Maintaining large institutions means that community services
receive fewer resources as reflected in the Commonwealth’s annual budgets.
Unfortunately, there continues to be a great deal of misinformation
floating around the Legislature with regard to deinstitutionalization. As the
Legislature considers what steps it will or will not take within the context of
budget deliberations, it is unclear as of this writing what the outcome will
be. Regardless, it would be worthwhile to pick up the phone and let your
statewide elected officials know your position on institutional closure.
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