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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Growing-Up Dominican and Disabled

By Juana M. Ortiz

The first impression is the one that counts. Judging others is common because having a good physical appearance is essential in order to fit into society.  I was born and raised in the Dominican Republic (DR).  In 1972 a couple of months after I was born, I was diagnosed with Cerebral Palsy.  According to the doctor, the left side of my brain was affected due to a delay during labor.

As a little girl, I didn’t have the opportunity to attend to a traditional school. Special education or services to teach a child with CP didn’t exist in the DR.  Although, I still had the desire to learn, to have friends and to live the same way that the kids of my family and neighborhood lived.

I grew up hearing people asking why I was walking that particular way, or if somebody put a curse on me. On a few occasions, I was outside and people stared at me like I was from another planet. What was even worse was that some kids made fun of me because of the way I walked or the way that I talked.   I have had to learn to live with these types of situations throughout my youth. All these experiences were the hardest part of living with CP in a society where children with physical limitations were not well accepted.

Some people in the DR follow the Santeria or Voodoo beliefs. These two practical beliefs are not recognized officially as the Roman Catholic religion, which is the major religion faith in the country.  In other words, people though that I was borne with CP because a person who follow the Santeria or Voodoo put a curse on me.

At that time, accepting myself, as a person with Cerebral Palsy, was the biggest challenge that I had to face, even though I had a lot of support from my family. There were times when I felt bad for myself, and I went to bed at night and cried because I couldn’t do the same things that the kids my age were doing.

The next day I’d wake up like nothing had happened to me the night before. I‘d wake up being the child that I was before I went to bed, without telling anybody how bad I felt. I hated when somebody outside my family showed any expression of sympathy or sorrow and I didn’t want my family to start showing the same expression either.

It is time to stop stereotyping, and start creating awareness about how people with physical limitation should be treated. Home is the first place to initiates the awareness about this issue. Frequently, when a child is born with some type of physical limitation such as cerebral palsy or any other type of medical condition, the family tends to over protect him or her. Fortunately, I am an exception.

I am the oldest of three children and only girl, I was raised the same way as my brothers with no special treatment if I did something wrong I was punished. My parents’ friends used to tell them that I should not be punished but my parents didn’t pay any attention to their friends’ suggestions.  We were treated equally, always.  This has helped me become the person I am, regardless of what other people thought or said about me.

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

Professir X

“Nothing Burns Like A Quad”

I looked at my nurse and asked her if she just heard what I heard? She said she did. It usually takes me anywhere from 2 to 2 1/2 hours from the time my nurse arrives until I’m in my wheelchair ready for the day. We often have the television on and watch Good Morning America, Dr. Oz and then The Doctors. Besides being quite entertaining the programs are also rather informative. The quote I had just heard was from a commercial for a local business which sells wood burning stoves, fireplace inserts, spas and pools. The statement was included in their advertisement for a line of stoves with the brand name Quadra-Fire.  Having quadriplegia myself, I am well aware that “a quad” is often used to refer to those of us with this disability.  At first I made some jokes but, as the day wore on, the statement really started to bother me. How could anyone be so insensitive? The more I thought about it, I began to realize that many people are oblivious to the special needs community. Rather than call the store and complain, it seemed to me, that it is much more important to EDUCATE society.

When I go out in public I consider myself a “Special Needs Ambassador”. I try to act that way all the time. Each of us is a role model for “our members” whether we want to be or not. The entire time we spend among the public we are being evaluated by others whether we want to be or not. If my premise is correct, then we must constantly project what we would like others to perceive about all our brothers and sisters. I believe my actions and behaviors should reflect the problems and frustrations that are part of living with a disability, as well as, how to cope with such challenges. I have no desire to be felt sorry for or pitied I just want people to see and understand the reality of having a disability.

Last week my wife and I went out to lunch. The restaurant was quite crowded and probably it would have been easier to go somewhere else, but then why should we.  I navigated through the narrow aisles which required some people to move a little and rolled up to an empty table. I am a big man and have yet to find a restaurant where my knees will fit under a table. I have a tray which fastens to my chair but causes me to stick out into the aisle a little more. My wife brings my own utensils, drinking cup and shirt protector (aka bib). When my meal came she had to help me get the burger in my hand. As I eat I will inevitably begin to lose control of a sandwich and some of it will fall on my chest.  The last portion must be eaten out of my hand because I cannot let go of it. Likewise, when my leg bag needs to be emptied we do it discreetly but do not isolate ourselves from others. Hopefully, some people will begin to realize the implications for a person with a disability.

Applying a few of the 10 Simple Principles found on ThisAbled website to this idea

Believe that you as a person with a disability are equal in value to the people around you.
• Believe that you have something society can benefit from.

• Understand that your disability makes you unique not different.

Do not let others define your goals or measure your success.
• Educate the young

I would like to modify the last principle above to include   EDUCATE the rest of society through our actions and behavior. When I was in the rehabilitation hospital I heard people referring to non disabled individuals as TABS (Temporarily Abled Bodied). We can help TABS understand that life is not as safe as many believe but involves risk and at best is unpredictable. Hopefully, able bodied individuals will begin to realize that they or someone they know could join our group at any time.

Talking to a 6th grade class