TASK FORCE ON CLOSURE OF STATE DEVELOPMENTAL CENTERS
April 2, 2012
Chairman Domalewski and members of the Taskforce – good morning and thank you for the opportunity to participate on this panel. My name is Carmine Marchionda and I am the President/CEO of Spectrum for Living, a New Jersey based-nonprofit which has for the past 30 years provided comprehensive residential, therapeutic, recreational, medical/nursing, educational and behavioral support services to adults with developmental disabilities. Spectrum prides itself on family involvement, as the CEO I report to a trustee board comprised of parents and siblings of the people we serve.
I am also here as the Vice President and a Founding Member of ABCD – The Alliance for the Betterment of Citizens with Developmental Disabilities. ABCD is a statewide organization representing member agencies that provide an array of community-based services to more than 10,000 people with developmental disabilities and their families. Today I would like to share two success stories on individuals who transitioned out of State Developmental Centers into the community. Their full stories are attached – I will just give you a brief summary.
The first – is Charisse, the 62 year old daughter of Gene and Denise. At a young age Charisse was diagnosed with moderate mental retardation, bipolar and mixed personality disorders. At the age of 16 Charisse was enrolled in the Vineland Training School after experiencing problems in the public school system. Shortly after her enrollment at the Page 2 of 3
training school she was transferred to Greystone Psychiatric Hospital where she remained for 20 years. In 1986, Charisse was transferred to North Princeton Developmental Center where she remained a resident for another 12 years. With nearly 32 years of institutional living and a history of severe behavioral conditions, there seemed very little hope that she would ever live independently in a community residential setting. In 1998 – with the closing of North Princeton Developmental Center – Charisse moved into a 16-person supervised apartment at Spectrum for Living that she calls her home today. Charisse is routinely engaged in relationships with her housemates, peers and family – she regularly attends a day program and leads a meaningful and productive life in the community.
The second – is the story of 60 year old twin brothers Paul and Jerome and their mother Ann. Paul and Jerome were born three (3) months premature and experienced severe developmental delays. Paul worked hard to overcome his disabilities – he graduated from high school, lived with his mom in the community and attended a day program. At the age of 44 he moved into a Spectrum for Living community residence uniquely designed for people with hearing impairments. Jerome’s developmental disabilities were much more severe – he was blind and deaf and unable to verbally communicate his needs and wants – Jerome required complete care. At the age of fourteen (14) Jerome was placed in the Woodbridge Developmental Center where he lived for 37 years. He was moved to North Jersey Developmental Center in 2003 to be closer to his family. For the 45 years that Jerome lived in the State Developmental Centers – his mother was unable to get her other son Paul to visit. Paul’s fear of being institutionalized kept him from seeing his brother for 45 years. It was Ann’s lifelong dream to have her two sons live in the community and to see one another again. After years of persistent advocacy, last year Ann (now in her mid 80’s) watched her son Jerome move from the North Jersey Developmental Center into Spectrum’s Closter Intermediate Care Facility. It wasn’t soon after Jerome moved that Paul requested he be brought to see his brother – the two embraced in a long hug. Today they regularly Page 3 of 3
visit one another, and mom has piece of mind that they will be together long after she is gone. I urge you to keep parents like Gene, Denise and Ann and their children Charisse, Jerome and Paul in your thoughts as you deliberate the closure of the State Developmental Centers. New Jersey must follow the national trend and support the rights of individuals with developmental disabilities to live meaningful and productive lives in the community. I have attached to my testimony a policy synthesis prepared by ABCD – A Review of Research Studies on Deinstitutionalization that may be helpful to the Taskforce. I have also enclosed testimony by ABCD on the closure of Vineland Developmental Center that was presented to the Senate Health, Human Services and Senior Citizens and Assembly Human Services Committees last year.
Again, thank you for the opportunity to appear this morning before the Taskforce.
CARMINE G. MARCHIONDA PRESIDENT/CEO SPECTRUM FOR LIVING 210 Rivervale Drive River Vale, NJ 07675 (201) 358-8086
Testimony for the Task Force on the Closure of State Developmental Centers
April 2, 2012
I am Patricia Carlesimo, Executive Director of LADACIN Network, and 2nd Vice President of the Alliance for the Betterment of Citizens with Disabilities, which is our provider association that represents well over 10,000 individuals with significant and complex medical and/or behavioral needs. LADACIN Network, formerly Cerebral Palsy of Monmouth and Ocean Counties, was a founding member of ABCD. We serve 2600 individuals and their families in the 2 contiguous counties through a lifetime of services including early intervention, Department of Education approved schools, adult day and supported employment services, residential and respite services. We currently have 7 residential facilities where 80 individuals with multiple physical and or developmental disabilities live fully integrated lives as a part of their community.
I am very pleased to have permission from Winnie Reimel, one of our residents, to tell her story.
Winnie was born in 1959 in Camden NJ. She was diagnosed with cerebral palsy in early childhood. She has three sisters and one brother. She grew up in her family home until the age of 16 when she moved to Vineland Developmental Center. Winnie was referred to our agency in 1991. I conferred with Anita Kneeley, then Executive Director, who visited Winnie prior to her placement in the community. Anita stated, “When we first met Winnie, she was in the Vineland Hospital, attached to the Developmental Center, weighing, if memory serves, less than 50 pounds, non-verbal, but with talking eyes, and a communication device that was not readily available to her. We spent some time talking with her – she responded quickly and intelligently with yes or no signals. She indicated her desire to be in the community. We were told that she could not live in a community setting because of her medical needs. We did not take Winnie immediately; it was necessary for her to gain some weight and resume her menstrual cycle. When she came to us, therapists immediately began to work with her to properly position her in a power chair and to position her communication device so that she could reach it easily and with a reduction in postural stress. When she came to the Green Grove Group Home in 1993 she became her own payee on Social Security.”
Winnie has spastic quadriplegia and is dependent on others for assistance with all activities of daily living including: toileting, bathing, positioning, transfers, feeding, and communication. At LADACN she has access to an array of services delivered through a transdisciplinary team approach. She uses a power wheelchair with an individualized seating system, designed in collaboration with a specialized DME vendor and our physical therapists, and an eye gaze system and communication book for communication purposes. She is at risk for aspiration due to dysphagia; however, she is followed by our speech pathologist with experience in this area and with proper positioning, adapted equipment, spooning techniques and food textures she has not had any aspiration pneumonias. In fact she has doubled her weight since she moved into the community. She now weighs 110 pounds and has been able to maintain this weight. Our therapists work in tandem with the group home staff to ensure that she is positioned properly in her wheelchair, that transfers are safely done, that she is fed correctly at mealtimes and that she is able to express herself to staff and friends.
Winnie has thrived living in the community. She has moved 3 times by choice over the past 19 years within our agency residential locations. She now resides in Dewey Street group home in Long Branch and participates in a day program 5 days a week .In the day program she receives occupational, physical and speech therapy and works on basic education, life skills training, computers, art, music, adapted recreation, vocational training, social skills and community integration. She is on 8 medications a day and sees her primary care physician, a gastroenterologist, a dentist and eye doctor. She has been hospitalized 8 times since she came to us with some very serious conditions; but, she has successfully recovered each time and returned to her community home. She has a long term friendship with a man who lives in Ocean County. She is basically healthy and happy at 53.
In November 2010 Winnie met a significant long-term goal. For eight years she had as an IHP goal to become her own guardian. Through her persistence and patience and with the assistance of our social worker and the Community Health Law Project, Winnie became her own guardian. She is very proud of this accomplishment as we are of her. The lawyer from the Law Project was concerned about communication. With LADACIN’s help she became familiar with Winnie’s means of communication and also had her work with a psychologist to ensure that Winnie understood her responsibilities as her own guardian. In the end they supported her decision and you will see in the attached photo a picture of Winnie with her lawyer and her sister on the day she signed the guardianship papers. Her sister, with whom she is very close, is her health care proxy.
I don’t want to think what Winnie’s life would have been like had she not had the opportunity to move into the community. Here is a person who preserved her family relationships, became much healthier, developed long term friendships, learned to be increasingly independent including managing her money, becoming her own payee, and after 18+ years of living with an assigned guardian, assuming personal guardianship against many odds. She shops, she dines, she participates in community activities and she enjoys the enrichment opportunities offered through her day program.
It may take a team to accomplish true integration into a community, but with adequate supports, people like Winnie are quite able to live successfully and in good health in the community.