And here's a video message from Sharon about the struggles of disabled young adults in New Jersey like me.
Wednesday, January 27, 2010
The Osbournes!
Ozzy, Sharon, and my dad (he's the guy on the right!) thank you for visiting my blog, and for continuing to show so much love and support!
And here's a video message from Sharon about the struggles of disabled young adults in New Jersey like me.
And here's a video message from Sharon about the struggles of disabled young adults in New Jersey like me.
Friday, November 27, 2009
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.
Listen to a clip from the show with my song here.
Saturday, November 14, 2009
Wednesday, October 28, 2009
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.
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.
Thursday, October 8, 2009
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.
For the rest, click here.
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.
Monday, October 5, 2009
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.".
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.".
Sunday, September 27, 2009
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.
---
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.
---
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.
Saturday, September 26, 2009
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
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
Friday, September 25, 2009
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.
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?
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?
Thursday, September 24, 2009
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.
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.
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