A Failure SYSTEM

I need to find a new place to live as soon as possible.  I am living with a relative but I can’t stay for a long period.

For years I have been receiving services from the Division of Development Disabilities in New Jersey (DDD). I contact DDD regarding to this problem and I asked them for help.  Unfortunately the process is taking too long.

I mailed the following letter that to my case manager from DDD back in the summer.  They were aware of the situation before the letter was written.

On September 1 20010, my parents will be moving back to the Dominican Republic (DR). Once they leave I will not have a place to stay.   Since the DR lack of resources for people with disabilities to attend school I can’t move back with my parents.   I also have student loans to pay. Financial aid doesn’t cover my entire tuition.

Since I moved to New Jersey at age fifteen, I have accomplished a lot of goals. Months after I moved, I was placed in Cerebral Palsy Center in Clifton.  The major focus of the school was to teach the students independent skills how to prepare a meal, clean a room, count money and so on.

At that time, my mother and I didn’t have any idea of what school I should go to. I was evaluated by the child study team of the district. According to them I should attend a special school.

Later on, my mother and I got involved in an advocacy group for parents with kids with disabilities. Five years later, thanks to my mother and the parents’ advocacy group we found out that I was placed in the wrong school. I transferred to a regular high school.

But my age was my biggest obstacle. I was already 20 years old and the limit age is 21.  We requested permission to the board education

In high school I had the opportunity to improve academically. Since the freshman year most of my reports cards were “As” and “Bs.” I graduated from high school on the honor roll.

After graduation I attended Passaic County College. I started taking ESL courses English As a Second Language because my English was a little poor. I had difficulties with class schedule, homework and I felt frustrated as a result, I dropped out of college.

Then I tried to find a job. The only job that I found was working in a workshop for people with disabilities but I didn’t feel happy to be working there. I wanted to do other types of work such as computer data, receptionist or file clerk. I was told that I didn’t qualify for that type of job. A year later I stopped working at the workshop.

I went back to college to complete the courses that I needed it. I took one or two courses per semester. One of my English professors became my mentor. Thanks to my family and his support I was able to success in college. While I was there my mentor encouraged to write personal essays, poems, articles and doing translations from Spanish to English. I didn’t know that my writing skills is strong. I also completed the ESL Program and took college level courses.

On May 2009, I graduated with an associate in liberal arts. On September first I transfered to William Paterson University. Now I am communication major. Also last year, I worked as intern for the state of New Jersey.

What Now for NJ DDS?

By Ed Heaton

Recently, I was reading the biography of George Steinbrenner, by Bill Madden. The more I read, the more familiar the character of Mr. Steinbrenner seemed to me. The ego, the incessant demands, the never admitting of a mistake, blaming either his manager, general manager or players on the field for his failures. George Steinbrenner actually fired someone once because it was raining.

After reading the book, I realized why Mr. Steinbrenner seemed so familiar to me. I had the unfortunate experience of working for the George Steinbrenner of NJDDS: Joseph Amoroso.

I would have probably never written this column except for the action of Mr. William Ditto, recently retired director of the Division of Disability Services. Mr. Ditto named Mr. Amoroso Acting Director of the Division. In so doing, he took a cold and turned it into influenza.

Besides Mr. Amoroso’s questionable people skills, there are questions surrounding him concerning figures and facts. According to a document written by Mr. Ditto in December 2008, DDS’s Information and Referral Area (led by Mr. Amoroso) receives 1,700 calls per month. What Mr. Ditto did not state was what types of calls are being received. How many of the 1,700 calls are new requests for information, repeat calls, or follow-up calls?  Both Mr. Ditto and Mr. Amoroso like to point to the amount of calls received as an indicator of the success of the I & R Area. Without outcomes attached to the calls, the number of calls received is not a true indicator of the effectiveness of the I & R Area. In fact, without a report of outcomes, an evaluation of the I & R Area’s effectiveness in assisting consumers cannot even be determined.

While interpretation of data can be debated, facts cannot. In my June column, I noted that Mr. Amoroso was found guilty of a discrimination complaint by the Chief of Staff of the Department of Human Services. Since then, I have discovered that the Merit System Board denied Mr. Amoroso’s appeal of that complaint. The thing is, if Mr. Amoroso had admitted he was wrong and just accepted his punishment, I would have never found out about the complaint. Instead, by always needing to be right, Mr. Amoroso filed an appeal, which became a matter of public record. It also bothers me that a person found guilty of a discrimination complaint, not once, but twice (because of the review), was named Acting Director.  Given this, wasn’t there anyone better qualified?

A search committee has been formed to find Mr. Ditto’s replacement. In his final column in the Able Newspaper of August 6. 2010, Mr. Ditto states, “We have recruited several people from outside of state government to serve on the committee to make it as fair and impartial as possible.” What Mr. Ditto does not mention, by limiting his comment to “state government”, is that all members of the committee that I know of are directly connected to government in one way or another: either county, academic, or retired state government employees. There is no one from the disabled community or the non-profit provider community to assist this committee in making their choices. My recommendation would be to name a CIL director (Eileen Goff) and a person from an advocacy organization (Lowell Ayre), to the committee to expand its outreach.  It is my sincere hope that a replacement for Mr. Ditto is named quickly.

The people I feel most sorry for are the current employees of DDS. I have served my time in hell. Theirs is just beginning.

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Patience and Persistence

I have waited for this moment for a long time. May 26, 2010 – 9:15 AM. Today I harvested my first turkey in 11 years. I had been an avid hunter prior to my disability. I believed I would never be able to hunt again, especially by myself. Today’s success was the result of the labors of many people: my wife, who walked me out and help me set up, my nurse Rhonda, who came at 6 AM the mornings in May so I would have more time to hunt, my neighbor Mike, who allows me to hunt his land, my friend John, who gave me his time to set up blinds made out of snow fence and camouflage material, and so it goes. My wife likes to say “It takes a village”.

The blind

I am also proud of myself. Over the 11 years, I got discouraged; turkeys often were close enough to harvest but something always went wrong.  In the beginning it was my inability to camouflage my wheelchair well enough, then my finger couldn’t pull the trigger, or I had a muscle spasm which alerted the turkeys to my presence and were instantly gone. But I persisted and attempted to correct the challenges as they presented themselves. But at the end of each spring I had the same results — NOTHING. Often it was a process of trial and error, but gradually my efforts began to improve my chances. I created a trigger adapter which allows me to fire the shotgun using my mouth. Not only does this solve the problem of trying to find the trigger, but it also allows me to use both hands to steady the gun. At many points along the way it would’ve been easy to give up and quit. I know from experience it’s a lot easier to give advice to others than it is to take it myself. So get discouraged, get frustrated, but don’t give up.

The trigger adapter I made

One of the things I like the most about hunting is that it is totally irrelevant to the game that I am an individual with a disability. To the turkeys I hunt, I am just another predator and that’s all I ask for. Today was definitely a day worth waiting for.

The turkey on my lap. Notice the turkey call I adapted to sit on my thigh so I could use it one handed

Christopher Reeve, Inspiration and Success

Did you know, CNN is doing a story on Parenting with Disabilities. I’m sure it’s very difficult for many of us to feel comfortable opening up and sharing ou stories. Although I found the switch to give me the passion to come forth and become some what of an exhibitionist , it’s not always easy. Well I also noticed while watching television , shows aren’t always delivering content involving issues, actors or athletes with disabilities. I wonder to myself sometimes since my disability I watch more television. I wonder if any of you experienced this as well and if so I asked myself, if television is mostly viewed by individuals with disabilities. If this theory is true then why aren’t we seeing ourselves or representations of our real aspiration on film and television.

Ratings are made up of human viewers, if no one is watching , industry is dropping. My comrade Larry the Rolling Filmmaker is a big advocate on putting more actors with disabilities working in Hollywood, I’m sure seeing this would give many more inspiration as well. The few friends I made that are aspiring to break down barriers as well as fulfill their dreams are continuing to pursue their passions. I’m not a famous actor, I didn’t grow up in Hollywood and I don’t have famous friends but I still see those who are struggling within their own careers. I didn’t truly become more of a name among my peers on my own. It took everyone I met on Care Cure Community to help me get to this point where I’m taking a stand on this movement for supporting each other.

It’s been my statement that Christopher Reeve is my inspiration, I learned more about spinal cord injury because of him. Not just learning about the research, politics and technology but collaborating and helping others. Although it’s very important we support each other for the things we need to live we also need to enjoy life. We are still human despite our disability but sometimes we feel detached from the world considered normal. I’m assuming we possibly make up a very large percentage of viewers when it comes to television ratings. I’m sure someone would enjoy researching this idea but I know the many friends I chat with online many are stuck at home. That’s no luxury like some may think. I had a few people say to me I live like a King having people cater to my needs. If being stuck in bed and can’t get up and having to wait for someone to wake up to help me eat is living like a King, someone please dethrone me.

Back to the topic about what we see on TV. I would like to finally see a network about disability, they can call it TDC The Disability Channel, not an unique name but something to get us relative television. I can be conceited saying this but that’s just another theory, I bet if Christopher was here we had a television show maybe a network by now. Christopher seemed to have the super powers to be forever Superman and he broke more barriers then most actors with disabilities for disability, not only for himself. I feel beyond whatever reason others may feel they can’t get ahead , many times when you use your talents or power for others you succeed a lot more. That was Christopher, no matter what ever anyone thinks, he didn’t use his power for self gratification he used his power to help all of us.

So finally what I’m trying to say, is we need to try to support bringing disability in the media. If there’s no ratings there’s no sponsors. CNN called me to be part in a promotion about Parents with Disabilities. The show has nothing to do with me but I will support, watch, blog, bulletin or send out a newsletter. No matter weather you are a disabled parent or not, post , watch, add a video of your support. The key to balancing all these TV shows we say are crap yet get the most air time is going to need the same attention. So please pass on this link and encourage others to if not get involved, read the synopsis.

http://www.facebook.com/l/9ed79;www.ireport.com/ir-topic-stories.jspa?topicId=432759&hpt=Sbin

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