Good morning Chairman Senator Vitale and Chairwoman Assemblywoman Vainieri–Huttle. We thank you for the opportunity to speak before your committees today in this joint session. We also appreciate the attendance and attention of the members of the Senate Health, Human Services and Senior Citizens and the Assembly Human Services Committees and recognize the commitment and support that members of both committees routinely show to the citizens of New Jersey with intellectual and developmental disabilities. It is much appreciated.

My name is Dan Keating. I am the Executive Director of The Alliance for the Betterment of Citizens with Disabilities (ABCD). ABCD is a statewide organization representing member agencies that provide an array of community –based supports for more than 10,000 people with complex physical and neurological developmental disabilities and their families. ABCD members provide services and supports to individuals with significant medical and behavioral challenges.

ABCD supports the closure of two Developmental Centers as recommended by the Task Force on the Closure of Developmental Centers. Furthermore, we believe that community providers are capable and skilled in providing quality supports and services to those who will be moving from the DCs. Community providers are ready to meet the challenge of providing quality experiences for those looking for new relationships in their communities.

Our providers know that all individuals, regardless of the severity of their disability can grow and develop. The movement toward community options for individuals with intellectual and developmental disabilities was reaffirmed in 2000 with the reauthorization of the DD Act. In part the act proposes that: Individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and states, and the nation. NJ’s provider community can accomplish this vision for those who want to move from the Development Centers. We start from the premise that all individuals can learn and develop. If we start from the premise that one can’t do something, they never will. If we do not believe that people can develop and we tell them that they can’t, they never will. They will never be given the chance. Rather than “they can’t” we say “why not?”

That is not to say that all develop to the same level or accomplish the same things. Everyone is given the opportunity to grow and develop at their own pace. The support network is always there. Providers create situations that minimize the risk. None of us know the ultimate level that anyone will reach. We cannot predict the future. However, we can allow people the opportunity. If we say they can’t they won’t! If, on the other hand we say they can go further, they will develop and grow. Limiting people’s experiences out of fear takes away opportunities for growth. We need to address the sources of fear and minimize risk so as to give people the opportunity to grow and develop.

Closing two developmental centers will give many individuals in NJ the opportunity to experience success and friendships in the community. In testimony before the Task Force on the Closure of Developmental Centers Deborah Spitalnik of the Boggs Center testified that although 90% of the individuals served by the NJ Division of Developmental Disabilities live in the community, only 66% of DDD’s resources go to those residing in the community. If the savings accrued from closing the DCs is reinvested in the community we can create a more balanced system of supports. More people with intellectual and developmental disabilities will have access to supports and resources that will enable them to more fully participate in the community. The opportunity for establishing relationships with people other than other individuals with disabilities will be enhanced.

We understand and appreciate the concerns of those who are skeptical about this approach and do not see the individuals who reside in the DCs as being able to live in the community. Yet, for every person in the Developmental Centers there is an individual already living, participating and included in the community with the same level of need for supports.

In testimony before the Task Force on the Closure of Developmental Centers Patricia Carlesimo, the Executive Director of LADICIN, an ABCD member agency, shared the following story: “Winnie was born in 1959…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….’When we first met Winnie, she was in the Vineland Hospital, attached to the Developmental Center, weighing…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….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. …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…She uses a power wheelchair with an individualized seating system… 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…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….In her 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. Through her persistence and patience and with … assistance … Winnie became her own guardian. She is very proud of this accomplishment as we are of her.”

Here is a woman with what most would agree are significant disabilities 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.

LADACIN said “why not,” instead of “you can’t” to Winnie.
If we hold that people can learn and grow and the upside is worth the value of giving individuals the opportunity to try, more is possible. Supports are available. The providers of community supports are skilled and capable of supporting individuals with significant disability in the community. It is happening now. With the closure of two DCs the savings, if reinvested in the support system, will enable more people on NJ’s extensive waiting list to obtain services and supports.

ABCD supports the closure of two developmental centers as recommended by the task force on the Closure of Developmental Centers. Furthermore, we encourage that the savings from the operation of those Centers be reinvested into the community. We need to invest in the people who work in the community, the Direct Support Professionals who consistently provide quality experiences for the individuals that they support. One additional suggestion would be to use the closed facilities to provide centers for medical, dental and other therapeutic supports. These centers could provide training for medical and dental school students and other health professionals. Individuals with intellectual and developmental disabilities could have access to the medical supports that they need.

Thank you for the opportunity to share the thoughts of the members of ABCD with you today. We look forward to on-going dialogue with the legislature and the administration to continually focus upon the provision of quality supports to individuals with intellectual and developmental disabilities in the community.

Respectfully submitted,

Daniel J. Keating, PhD

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

Patricia Carlesimo

LADACIN

April 2, 2012

I am Patricia Carlesimo, Executive Director of LADACIN Network, and 2^nd 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.

The Alliance for the Betterment of Citizens with Disabilities (ABCD) appreciates the opportunity to provide input to the Department of Human Services as you prepare the FY 2014 budget. This is a very important time for the DHS/DDD service delivery system. Thousands of individuals with disabilities and their families, as well as the citizens of the state are counting on all of us involved in the support system to get it right. Collaboration and partnering are essential.

The goals for the future have become clearer over the past several months with the approval of the Comprehensive Waiver and the binding decision to close two developmental centers. More people will now benefit from Medicaid support and more people will be supported in the community. These are very welcome developments.

So, the work begins. Indeed, it has begun. Preparations are being made to completely overhaul the reimbursement system for providers. There is an ambitious schedule for accomplishing this overhaul. We ask that as you prepare your 2014 budget that you include funds to not only maintain the status quo, but to give providers additional funds to enable them to insure quality supports while devoting resources to re- engineering their operations to meet the demands of the future. Most importantly, we request that any savings gained by closing developmental centers and the implementation of the Comprehensive Waiver be reinvested in the development of the community support system infrastructure.

It is no secret to anyone here today that community providers of supports to individuals with intellectual and developmental disabilities and their families have received no increases in their contracts for over 5 years: that is no additional funding when the cost of everything has gone up significantly. Over those same 5 years the Consumer price Index has gone up 12%! Despite this fact, the majority of providers have worked diligently to keep their doors open and be there for those whom they support. Every year we are told “there is no money, these are difficult times” and so providers keep providing the supports necessary to keep the system alive by working against all odds to make ends meet.

This cannot continue without significant impact upon the system’s quality. Furthermore, the stakes are now even higher. Providers are being asked to maintain quality services and supports AND expend valuable resources to re-engineer their billing systems, record systems and data systems. A Fee for Service model requires new ways of doing business, new skill sets for many employees, new software and hardware. Many providers do not have access to capital to make the necessary investments in these resources when they have not received any increases for 5 years on cost based contracts. Some providers may have been able to raise philanthropic gifts to cover their operations but that gap is only going to increase. And raising money is not going to get any easier.

Unfortunately, the effects of the financial situation fall most directly on the backs of the people doing the most difficult jobs, the direct support professionals. Salary increases often don’t materialize or if there are increases they are eradicated by increases in contributions to health benefits, if they are even offered.

Therefore, today we are asking that you budget a cost of care increase that will help stabilize operations for providers as they work in collaboration with the Department to achieve the outcomes desired by all, quality community based supports for individuals focused upon the individuals’ desires and dreams to be active participants in society. Specifically, we join our colleagues who are asking for a 3% increase in contracted rates in FY 2014 followed by a 2% increase in FY 2015, and a 1% increase in FY 2016. This 6% increase over the next 3 years will enable providers to maintain the quality supports that are currently being delivered and ensure viability for the future. A smooth transition to fee for service will be made more achievable with this additional funding.

Again, we thank you for the opportunity to share these thoughts with you today. ABCD members look forward to actively participating in the creation of a new and improved service delivery system with DHS and DDD.

To read ABCD’s testimony click on ABCD Senate Budget Testimony FY13.

ABCD’s testimony focuses on the rights of individuals to live in the community in the most integrated setting appropriate to their needs.  The testimony also highlights thirty years of research that demonstrates there is a benefit to adaptive behavior (daily living skills) and challenging behaviors of individuals with developmental disabilities moving to community settings from institutions.

To read ABCD’s testimony click on  Testimony to Joint Hearing on Closure of Vineland Developmental Center.  We also have appended our recent Policy synthesis on deinstitutionalization research.