Parents Make a Group Home a Reality
By Pola Rosen, Ed.D.

Dr. 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.

“We 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 retardation].”

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.

“Finally 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 intervention program.

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.

“As 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 become advocates.

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.

“We, 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.”#

Christine 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 our children.

Pola Rosen, Ed.D. earned her doctorate in special education at Teachers College in 1980.

Additional 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 ednews1@aol.com

Education Update, Inc., P.O. Box 20005, New York, NY 10001. Tel: (212) 481-5519. Fax: (212) 481-3919. Email: ednews1@aol.com.
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