Dear Governor Corzine

"Here's a copy of the letter mom and Dad wrote to Governor Corzine on September 8, 2009. They copied many of our elected officials."

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September 8, 2009

Governor Jon Corzine
Office of the Governor
P.O. Box 001
Trenton, New Jersey 08625

Dear Governor Corzine:

What do New Jersey, Mississippi and Louisiana have in common? According to the New Jersey Department of the Public Advocate, these 3 states rank the worst in institutionalizing adults with developmental disabilities. Rather than providing necessary enriching individualized, community based care to this population, New Jersey’s facilities most often offer the least to those most in need. Our daughter, Annie Leeds has a developmental disability and is a New Jersey resident.

Annie suffers with Rett Syndrome a degenerative neurological disorder. She cannot walk, talk and has no control over purposeful movements of her arms. There is a feeding tube that helps provide her nutrition. Seizures are a regular part of her life. For her, each day is a tremendous struggle, yet she greets each day with a bright smile and enthusiasm.

Annie’s needs were assessed by her school district when she turned 18. The municipality agreed that Annie was medically fragile and that the most appropriate ‘local’ care could be provided by the Center for Discovery.

Annie turned 21 this past December. For 3 years she has lived in the Center’s residential facility. For Annie, it has provided her with a life of dignity. Treated with care and compassion, she found a home away from home. She lived in her own room in a house with her peers. Annie thriv ed in an enriching environment. For Annie, and us, the last 3 years have been a gift.

Annie made the mistake of turning 21 this past December. She doesn’t know it, but having lived to adulthood brought on a new set of problems for her. You see, once she became an adult, Annie’s care transitioned from the school district to the DDD, an arm of the New Jersey government, which is forcing her back into the state of New Jersey without regard to meeting her acknowledged needs. The Center for Discovery is in New York state.

Nothing about Annie’s disability or her medical, social or psychological condition changed to warrant Annie’s removal from the Center. Because New Jersey does not have intermediate care facilities in home-like settings for the medically fragile, as New York and Pennsylvania do, (the Center is one such facility) there is substantial concern that Annie’s minimum quality of life needs will not be met.

We made frantic efforts to keep our child in her New York residence until a suitable alternative could be found. Last Monday the New Jersey Supreme Court denied our emergent application. Tuesday morning there was a party for Annie at the Center. Her belongings were packed up, and Annie took a trip to a diminished existence.

While Annie had lived in a residential placement, consistent with her needs, she was now told she would be spending her days in the Eastern Christian Children’s Retreat. She would be in a hospital like setting, in a “bedroom” with 3 other people. Despite medical reports of the damage this would do, this was the best she would be offered.

But the story was not over. Thursday brought news that ECCR had no beds for Annie. Having mandated that Annie relocate, there was now no place for Annie to go.

Friday, the DDD suggested that there was a place for Annie in Hunterdon County’s Developmental Center. She would not be going to a facility integrated with the community, as the ‘Olmstead’ law mandated, but to one that was in the process of being emptied of its occupants, due to its isolated, hospital-like environment and lack of social and community opportunities for its residents.

It is impossible to understand what it means to be the parents of a special needs child. Annie also has an 18 year old brother who is autistic. For us, to watch this miscarriage unfold is bewildering.

We live very close to the New York border. Yet, finances alone, not distance or quality of care, are directing whether or not Annie’s agreed upon medical and psychological needs will be met. Annie has found herself in the United States of New Jersey with no apparent way out.

Annie’s case needs immediate attention. The State of New Jersey must do everything it can for this young woman who literally has no voice of her own. Don’t put her away, and don’t just treat her like another number. The State must step up. As is a primary duty of the government, make certain you provide the most for the least among us. Don’t end her life at 21.

Sincerely,
Nancy Leeds
Harvey Leeds

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"Since then we have been met mostly with silence. My local assemblyman John Rooney never responded. Mom called his office twice but he was never available to speak. No word back from Governor Corzine, Congressman Garrett, Senator Frank Lautenberg, Senator Robert Menendez or County Executive Dennis McNerney. Senator Weinberg's office did respond but while the person mom spoke to did seem sympathetic, there's been no further contact.

While I am still at home, I am homeless. I do not belong here and I do not belong where they want me to go. They should pay attention to me and to my cause. I am important enough. They just don't understand that yet.

The state needs to understand that Mom and Dad love me and have always cared about the quality of my life. They could never place me at either of the New Jersey Developmental Centers we visited. Yet, yesterday, mom accidently gave me two doses of my Trileptal seizure medicine. She's tired and stressed out, I don't blame her but it made me vomit twice and I was really tired all day. She called my neurologist and he told her I would be alright and I am. Mom never did anything like that before. She's exhuasted from caring for me constantly trying to make sure I get my excercise, feeding me, bathing, getting me out of the house. I'm a full time job for two people."

Hear me

"I cannot speak for myself. I cannot write. I cannot type. I cannot communicate. But I will be heard, today, tomorrow and every day from now until someone listens.

I am scared. I am depressed. I am lonely. I am worried what this is doing to my mom and dad.

It is 21 days since I left the Center for Discovery. My parents tell me that New Jersey demanded I come back but they only have institutional placements for me because I use a feeding tube and have seizures. Why couldn't I stay in my home in New York where they were able to give me the support I needed to live like a civilized person? I now sit at home with little to do but stare at the tv and whine. Whining is the only way I can be heard. It is a shrill uncomfortable noise, but I have no other way to let everyone know how unhappy I am.

I get stiffer by the day, sitting in this wheelchair. The therapies that helped keep me from deteriorating have not been given. I've had some seizures while my mom's been showering me and one time I cut my foot on the metal shower door track. I felt worse for my mom because there was no one home to help her lay me down and then lift me back up after it was over. Mom's back is killing her as she has to try to deal with getting me up and down all day. She is popping Motrin way too much. It hurts me to see her in pain.

Mom, Dad, our family friend Joanne, and I went to visit the places that the State of NJ says are appropriate to handle my needs. You would not want anyone you loved to be there. Living in a hospital like setting in a room with 3 other people. No working shower, receiving therapies in a depressing basement where the laundry is being done. No one even close to my age. It was a sad and uncomfortable environment. I want to live in a home, not an institution. My privacy and dignity have meaning and are not just empty words. Is there no hope in this world?

I miss my friends at the Center for Discovery. I miss my prom date. I got an email from the staff at my house where I lived for the last 3 years. They say Adam is flirting with Abby now. It was heartbreaking to read their words telling me how much they miss me. I miss that life too!

I wait each day for someone to do right by me. In the meantime, I suffer in silence because I have no voice. But just because I can't speak doesn't mean I should not be heard. Please listen. I am begging you to listen."