Another Song from Another Friend

Jacqui Naylor debuted her new song for me on NYC radio legend Vin Scelsa's Sirius XM Radio show, Idiot's Delight, this Wednesday night!

Listen to a clip from the show with my song here.

Jersey Kidz Rock

My good friends, Jersey Kidz, just wrote a song for me! Here's the music video.

A Start

I’m happy to tell you I started a day program last Monday. I get picked up at 9:30 am and I’m home at 2:30. It feels good to get out of the house and to see new faces. I even saw Scottie, an old school buddy from years ago. He graduated a few years before me but we recognized each other immediately and I overheard him tell the person next to him how cute I was.

As I said, it’s great to be meeting new people but, I’m dying to get out of my wheelchair, while I am at the program. There is now almost no physical therapy for me. 2 months ago I left the Center for Discovery and almost daily attention to keep me in shape. Here it seems the only time I get out my chair is when I need to go to the bathroom and that’s turned into an ordeal where I’m hooked up to a lift. I guess I’ll get used to it.

My mom makes sure I get exercise when I arrive home. This past weekend we walked up and down the block which is hard for me because it’s a hill and walking downhill is very challenging for me. I want to show everyone at my day program how I get around with a gait trainer. I need more physical therapy, which will stretch me and work on my balance and transitional skills. I don’t want to lose all I’ve gained over the years because of lack of use.

My mom and dad have not given up their fight with New Jersey. Our government officials have been quite unresponsive to us. But, there are some wonderful people and organizations that we are slowly becoming aware of, that may be able to help me find a community based home that will provide me with peer socialization and a purposeful life outside of an institution. Strangely, New Jersey has not helped us connect with these organizations – the only option they offered me was institutions that would hide me away like I was living in the 1950’s.

At least now, I have a day program through DDD, and I am going to receive 35 hours a week of home health care assistance so my mom will be able to take Zack to his after-school activities, doctor appointments and get some help feeding and bathing me.

This fight is far from over, but my mom says my struggle is really a battle for all the disabled people with medical frailties living in New Jersey. She says I’m a pioneer who must fight for the right to live as an adult in my own community. I say New Jersey must stop spending our tax dollars on outdated institutions that warehouse people like me.

Disabled Adults Can't Wait Forever

Here's another story about New Jersey's long waiting list for placements for adults with disabilities like me. The post is almost a year old but the story remains the same: Most young adults in New Jersey are forced to choose between living at home indefinitely, despite the burden it places on their families and the enriching life it denies them, or to go into a hospital-like institution that falls very short of meeting the state's goal (and the court's demand) that we receive the least restrictive care possible.

New Jersey's official goal for disabled clients, established years ago, is that they be placed in the least restrictive setting compatible with their disabilities. For most, that would be a supervised group home, housing six to eight people. For a more independent person, it could be a supervised apartment.

In other words, we want the disabled to live as full and free a life as they can without endangering them by forcing them to do things they cannot, which can mean anything from caring for their hygienic needs to fixing their meals or taking the bus to a job.

...But that scenario became a reality for only 28 adults last year.

For the rest, click here.

Rabbit Hole

There really are a lot of you out there writing to our governor, congressmen, and assemblymen about my situation. Some of you have even gotten responses which you have forwarded to us. You've been met with form letters or answers that are frustrating because they don't understand the system and how I'm falling through the cracks. My sister's friend, Mary, got a response to one of her letters from assemblywoman Vandervalk, stating that the Eastern Christian Children's Retreat which was originally offered to me and which I visited, was wonderful and that I'd get excellent care there. It's true, it would have been a nice place, if I didn't have a feeding tube and seizures, because then I could live in their charming cottages that are more home-like. Instead, I was offered a hospital-like institution with 4 people to a bedroom facing a nurses station that would have lights filtering into the room all night.

That being said, I want you to keep speaking for me. I need you to be my voice and I'm gratetful to you for standing up for me. Right now many of your pleas for help seem to be falling into the Rabbit Hole. We get kind of excited one day that progress is being made. Then the next, there's only silence. This is a strange and difficult process. They may not have quite gotten the message yet, but their ears and their minds are starting to open. So don't stop.

Anyway, while I wait for the Rabbit Hole to close up, and our words to sink in, I sit and sit some more. It is like the Cat in the Hat on a cold wet day where there is no place to go, and nothing to do. "So all we could do was to Sit! Sit! Sit! SIt! And we did not like it. Not one little bit.".

Freeing the Disabled

It turns out that young adults like me are struggling to stay out of senior nursing homes and hospital-like institutions all over the country, not just in New Jersey. Here's a great letter to the editor from today's New York Times on the subject.

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September 27, 2009
LETTER
Freeing the Disabled

To the Editor:

Re “Helping Aged Leave Nursing Homes for a Home” (news article, Sept. 19):

Older adults are not the only ones who suffer the jail-like indignities of confinement to nursing homes. The real tragedy is people with disabilities in their 20s, 30s, 40s or 50s who are condemned to spend the rest of their lives in nursing homes because of spinal cord injuries, traumatic brain injuries, cerebral palsy and other disabilities that interfere with independent self-care.

Your article describes some of the many benefits of community living, including, above all, freedom. But Medicaid’s institutional bias denies these younger adults the right to live and work in the community — and denies them their freedom.

Health care reform could end this oppression and allow people with disabilities and older adults to choose where they want to live. Policy makers could end the institutional bias by including the Community Choice Act in health care reform, thus throwing open the nursing home doors to freedom and community living for all to choose.

Barbara L. Kornblau
Grand Blanc, Mich., Sept. 19, 2009

The writer is dean of the School of Health Professions and Studies, University of Michigan-Flint, and health reform policy coordinator for the American Association of People With Disabilities.

How Can I Help?

Please contact our NJ elected officials and let them know that it's not ok to terminate enriching, community-based services for me and other disabled young adults at 21, forcing us to choose between spending the rest of our lives in inadequate hospital-like institutions or back at home without the therapies and socialization that we need.

EMAIL CONTACTS:

My parents have reached out to all these people, and you can too.

Governor of New Jersey, Jon Corzine

NJ Senators Frank Lautenberg and Robert Menendez

Our NJ State Assemblyman, John Rooney; Our NJ State Assemblywoman, Charlotte Vandervalk; and our NJ State Senator, Gerald Cardinale

Our Congressman, Scott Garrett

Our county executive, Dennis McNerney

Loretta Weinberg, Vice-Chair of the Health and Human Services Committee of the NJ State Senate

Or you can look up your elected representatives anywhere in the United States by zip code here.

These politicians are not our enemies. We just have to remind them, nicely and politely, that their job is to be advocate and ally for all of us, and especially for those most in need. You can use the letter that my mom and dad wrote to the governor, or you can write your own, or you can tell these elected officials to visit my website and read it themselves.

Or you can share my story with our local publications, like The Bergen (NJ) Record and/or The Star Ledger

Music Video

Here's a video of me that my dad and some friends from MTV made 10 years ago (sorry for the poor quality, this was back in the days of VHS!). They showed this at a Rett Syndrome fundraiser, where my dad and Julia Roberts were being honored. The song is "Hard Knock Life" by Jay-Z.



As you can tell from the video, it takes a lot of people to help me every day. My mom, dad, teachers, and therapists all made sure that I was happy, healthy, exercised, socialized, and well fed. Now that I'm 21, though, I'm too old for public school, so I need to live in a special residence to receive all these kinds of care. That's why I'm so sad that I was forced to leave The Center for Discovery by the New Jersey Division of Developmental Disabilities. Back at home now, I don't receive all these services that I need, and as much as my parents love me, they can't provide all the necessary therapies that I need to maintain my well-being.

Family Photo

I thought I'd share a photograph of me spending time with my younger twin siblings, Zack and Sophie. They are 18 years old.

Zack has autism. He lives at home with my mom and dad, and attends a county public school during the day, like I did until I was 19. Zack is very friendly, an avid outdoorsman, and he's an expert at 1,000 piece puzzles. Zack is always looking after me.

Sophie is a freshman at college. She is coming home to visit me tonight for the first time since going away to school. Sophie is studying to be an occupational therapist, so that she can help other people with disabilities when she grows up.

I love my little brother and sister very much and I can't wait to spend time with them both this weekend.

A Very Good Day

Today is a very good day.

I woke up to learn that almost 13,000 people read my blog overnight!!

My dad worked his magic with his friends, Chad Gilbert from New Found Glory; Hayley Williams from Paramore; Pete Wentz from Fall Out Boy; Benji and Joel Madden from Good Charlotte, and Nicole Richie. Thanks to all of them, and their tweeting about me, I am now getting words of encouragement and hope from all around the world. I can't tell you how grateful my parents and I are for everyone's support.

Today the house is going to be filled with the music of all those groups who opened their hearts to me. This place is gonna rock.

I am so excited that my little sister is coming home tonight, for her first visit since she started college a few weeks ago. I can already feel her hug as she wraps her arms around me. I can't wait to cuddle with her and hear all about what is happening at college (mostly about the boys).

So many of you have asked how you can help. For starters, keep doing exactly what you've been doing: Tweeting, Retweeting, Facebooking, Emailing...whatever it takes to share my story with more people. Then, if you live in New Jersey (or anywhere else on the planet, for that matter) you can contact our Congressmen, Senators and Governor to let them know that I have many friends who care about me and want to make certain that my needs (and those of others like me) are properly addressed.

For their contact info, please see my post How Can I Help?

Just Another Day

I spent another day with nothing to do, no place to go and little to occupy my time and my mind. My spirit continues to sag as I wait hour after hour and day after day for someone to pay attention.

My parents are mad at those who continue to ignore me. I listen as my mom, dad, and their friends speak of their frustration and anger. They question why the politicians, who you would think should come to my rescue, fail to respond to their phone calls, emails and letters.

While my friends at Center for Discovery are but a distant memory, I sit and stare at Oprah, Rachael Ray and Martha Stewart. They are now my new best friends.

I watch as mom tries to exercise her back. She knows she needs the strength to get her, and me, through another day.

There are a lot of you listening to me now. I ask you to let those who should be helping me know that you are out there and you are expecting them to do what's right.

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."