Make a Group Home a Reality
Pola Rosen, Ed.D.
Christine Cea is the parent of Stephanie, a 30-year-old daughter
with severe mental retardation and physical disabilities who lives
in a group home, the Lo Faso House, run by community resources
in Staten Island.
were fortunate because Stephanie was born on the cusp of new legislation
starting with early intervention at about the age of about two.
There was no public education and I was fortunate to have a neurologist
who said she should be with other people and we should take her
with us for stimulation wherever we went. I appreciated that because
many doctors were not saying that although it was an accepted
practice at the time. He never advocated putting her into Willowbrook
[a state-run institution in Staten Island for children with mental
Finding a program was difficult partly because Stephanie wasn’t
walking, which was odd because many children with cerebral palsy
children are non-ambulatory, but even programs serving children
with cerebral palsy preferred ambulatory individuals at the time.
we found a program at Staten Island Aid for Retarded Children
that included physical and occupational therapy and also included
people who came for home visits from an agency, a staff person
knowledgeable in child development,” said Cea. “As a parent I
was thrilled with the program; everyone loved the children and
I met other parents.”
According to Dr. Cea, a parent support group has been of utmost
importance throughout the years. In fact, the parents she bonded
with almost thirty years ago still get together for dinner annually
even though two of the children have died. Stephanie lives in
the LoFaso Home today with one of the children from the early
According to Cea, the early intervention programs are much more
effective today because they identify developmental delays at
zero age with the goal of getting children into regular kindergarten.
The mindset is different; there are more choices today. Thirty
years ago, there was only one program. Today, doctors are calling
centers to refer infants to programs and everyone has free access.
At the age of four, Stephanie started public school. While Dr.
Cea preferred the safety of the small private school, the new
law, PL 94-142 (1975) mandated that public schools provide the
most appropriate setting for each handicapped child. The problem
was that teachers were not really prepared to deal with children
like Stephanie who needed to be toilet trained. Teachers appeared
to be unhappy with the new law. Dr. Cea went into school, toilet
trained Stephanie and stayed to help make the transition smooth.
a parent, it’s always been important to me to have a good relationship
with the school staff. It was a little harder in the larger atmosphere
of the public school. I was always active and got involved in
the monthly parent meetings. It was my way of coping.”
Camp was a wonderful alternative for the summer, the Rabbi Block
School in Brooklyn. “We were a group of parents who could have
afforded a private camp but there weren’t any. All of us loved
our children and never considered the alternative of residential
schools, particularly at that time, when the abuses at Willowbrook
were hitting the press.”
One of the difficulties at the time was that parents were not
apprised of their rights. According to Cea, if you didn’t know
what an IEP (individualized education plan required by law) consisted
of, then you couldn’t ask for short or long term goals for your
child. “We were very trusting then and were appreciative of the
program because there were no choices. Today parents are very
savvy and will even bring lawyers to meetings.”
Dr. Cea’s advice to new parents of disabled children would be
to educate themselves on their rights and the rights, educational
and otherwise of their children. The information is out there;
you must look for it. Cea sits on the executive board of the Staten
Island Developmental Disabilities Council. There’s one in every
borough. “It’s important to get involved.” There are Committees
on Special Education, (CSE) and on Preschool Special Education
(CPSE). Parents must prepare themselves for those meetings, which
can be tough at times. Each district has a Committee on Special
Education which discusses transitions in children’s lives. Parents
don’t always know they can say “no.” Parents must know how to
Stephanie went on to attend the Hungerford School and the Occupational
Training Center (OTC) in Staten Island. At the age of 18, Stephanie
entered a group home. “We were pioneers,” said Dr. Cea. “Most
group homes were composed of post-institutionalized people. This
group home was started by parents who had known each other and
planned to be very active in the home.” The parents bought the
house, totally renovated it and worked with the local agency,
Staten Island Aid, in setting up the program. There was some community
opposition to our residence but it was easily surmounted because
we had selected an older, unsaturated neighborhood with a great
deal of property. Dr. Cea was told that ten people were needed
to open the group home. The parents had only six; Staten Island
Aid provided the additional four people. If the parents made any
errors, it was in accepting the additional people.
The parents did not know that they could insist upon a smaller
setting, the prevalent style today. Today, thanks to Individualized
Residential Alternative (IRA), it is even acceptable to have one
or two people living in a community residence.
The greatest obstacles were money (architects and attorneys had
to be hired) and the slow bureaucratic actions of the state. It
took about four years to finally get the house open. According
to Dr. Cea, there were extras that the parents wanted and paid
for: extra bathrooms for example and central air conditioning.
Today, parents can choose to supply extra money for weekly outings,
pizza parties and clothes. Throughout the process, the greatest
sources of support, according to Cea, were the other families.
The LoFaso House was named in memory of one of the original group
of children, Gary LoFaso, who died.
Community residences are the choice of most handicapped people
with disabilities and are provided by the state at age 21. Many
waiting lists face families in every part of New York City. Governor
George Pataki wants to have zero waiting lists in five years.
Cea points out other needs: more staff and better staff pay. With
IRAs there are many more choices today. And agencies have learned
to work with families, which is a good thing because parents are
much more proactive today.
A high ratio of staff to residents prevails: one to every two
people plus a manager, an assistant manager psychologist, social
worker, and nurse comprise the team which rotates among several
homes. There are different types of group residences: ICF (intermediate
care facility), supported living for people who can live semi-independently,
and IRAs which are community residential alternatives. Stephanie
lives in an ICF because she and her friends require extra care.
the parents are still advocates; we still watch, we participate.
I never expected not to do that. Who else will speak for my daughter.
It’s been a long road; it’s meant changing people’s attitudes
and changing people’s minds. The whole field has changed. Having
more families involved in group homes will improve services and
the way people think about group homes.”#
Cea,Ph.D. a developmental psychologist is at Fordham University
at the Center for Ethics on Education, doing research on mental
retardation. Her story is a living testament to the power of love,
to the power of parents to alter the way in which society treats
Pola Rosen, Ed.D. earned her doctorate in special education at
Teachers College in 1980.
resources for parents:
Agencies that operate group homes currently are YAI (Young Adult
Institute/National Institute for People with Disabilities) and
AHRC (Association for Help of Retarded Children) and local agencies
in your area. Contact your local Developmental Disabilities Council:
Bronx, Brooklyn, Queens, Staten Island, Manhattan. For help contact
us at firstname.lastname@example.org
Education Update, Inc., P.O. Box 20005, New York, NY 10001. Tel:
(212) 481-5519. Fax: (212) 481-3919. Email: email@example.com.
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