Advocates of the Month June 2012

Gary Rubin

Gary Rubin was born on June 16th, 1965 and currently resides in Elizabeth, NJ. He has been a member of Community Access Unlimited since June 8th, 1992. Since inception, Gary has been energetically involved in self-advocacy and always strives to share his experiences with others. Through his dedication and drive, Gary has landed many leadership positions in the disability community along with a variety of employment. In the past, Gary has been a council member for NJUSA from 1998 to 2007, a former president of Helping Hands, which is Community Access Unlimited’ Self-Advocacy group, a member of the SWAT group from 2004 to 2005, and lastly, a treasurer for Next Step, another consulting group within CAU. Most notably, Gary was a NJ Statewide Network Council #2 Chairman, which he served for six years, and stepped down from his position once he was awarded the Jane Miller Award in 2012. This is a particularly groundbreaking achievement as this award mirrors a long-time advocate who exhibits superior leadership skills.

In regards to his educational experience, Gary graduated from Parsippany High School, in Parsippany, NJ in 1986 and is a 2002 graduate of Partners in Policymaking, sponsored by the NJ Council on Developmental Disabilities. His past roles have allowed him to evolve as an advocate as he is now the Vice-President of the Statewide Advisory Board for the Arc of NJ, a ‘Monday Morning’ facilitator for Union County, a DRNJ-PADD member, and lastly, a consultant for Jump Start, which is a consulting company that has been influential in executing advocacy workshops for the community, schools, CAU and Boy Scouts of America.

He has held a position at Standard Nipple Works in Garwood, NJ from 1996 to 2003. Gary has also worked in the maintenance department at Community Access Unlimited beginning in 2010, and most recently he has obtained a position as Self-Advocacy Field Coordinator.

Considering how active Gary is in the disability community, his stories shed light on a lot of the issues that people with disabilities are currently facing today. Gary expresses his discontent with the possible changes that will take place in the Medicaid program if cuts from the budget are executed as planned. He explains that the services he is granted through the Medicaid program are inconsistent. For example, there have been instances where a doctor has forfeited treatment unexpectedly. Through much trial and error, Gary has found doctors that he is satisfied with but if spending cuts slashes the Medicaid program, Gary fears he will lose his choices of care and prices will only continue to increase.

When it comes to closing developmental centers for people with disabilities, this is a topic that hits too close to home for Gary. Having experienced what it was like to live at a state-run developmental center when he was younger, Gary is very much against keeping any of them open. Gary has resided at three developmental centers before becoming a member at CAU and each experience was degrading and appalling. Gary notes that his time at Johnstone Developmental Center, which is now closed, was the worst of them all. There is no room for self-determination or autonomy at a developmental center and clients are treated as if they have no rights. Gary hopes that in the future, people with disabilities can avoid going to a developmental center as conditions are still as bad as they were in the past. Gary has protested at the following developmental centers in New Jersey: Vineland, New Lisbon, North Princeton, Woodbine, Woodbridge, Totowa, and Johnstone.

Gary was sent to live at a developmental center when he was 15 years old, which is the same year his father put him on the waiting list in hopes of Gary receiving home and community based services. Approximately 10 years later, Gary’s father discovered CAU at a meeting in Somerset County, and realized that it would be possible to remove Gary from an institutional setting. After a lot of hard work, Gary was able to get off the waiting list and was granted support services through CAU. Gary explains that the length of the waiting list is very damaging as it has a negative effect on one’s health and that states need to make more of an active effort to reach everyone. At the end of our conversation, Gary closed by saying, “We’re all in this together. We’re all equals therefore we need to be a team and help the people who don’t have a voice”.

Sid Katz

Sid Katz was born in Newark on October 13, 1950 and currently resides in Union, NJ. He has been actively involved in self-advocacy for almost half his entire life. Sid is a 28-year member of Community Access Unlimited and one of the ‘founding fathers’ of the Helping Hands Self-Advocacy Group at Community Access Unlimited (CAU). Sid has been involved in the New Jersey Self-Advocacy Project and New Jersey United Self-Advocates for 25 years. Sid is a former president of both of these groups, who has held various officer positions and has been instrumental in creating by-laws and policies. Sid recently obtained a position at CAU as Self-Advocacy Field Coordinator and has been a Board Member of CAU in the past. Currently, Sid is the President of Helping Hands, Coordinator for NJUSA-Northern Region and the New Jersey Alternate Representative for the national group, Self-Advocates Becoming Empowered (SABE). Sid is an active member of the American Association on Intellectual and Developmental Disabilities (AAIDD), attending many of their national and regional conferences.

Sid is also a Board Member of Jump Start, a consulting company who has been instrumental in performing advocacy workshops for the community, schools, CAU and most recently Boy Scouts of America. He has been asked to train staff on Person Center Planning, Individual Habilitation Plans, and Individualized Support Plans for the members of CAU. Every year, Sid coordinates all efforts to ensure a well-planned CAU “Member’s Day” for all the members of CAU to recognize everyone for all their personal achievements throughout the year. Most recently, Sid was elected unanimously as the Chairman of Council 2 among the State of NJ Advocates and as the Vice President of the Advisory Board for the NJ-Self Advocacy Project.

Being so immersed in the advocacy field, Sid has a breadth of knowledge and experience on the issues that directly affect the disability community. Sid has begun to notice gradual changes in the Medicaid program in the past year as he was shifted into an HMO plan about a year ago, which means Medicaid required him to switch doctors. At first, Sid was a bit confused as to what was going on and why he was being switched because he was one of the last of his friends to undergo this process. However, Sid mentioned in our interview that he received a letter about a week ago stating that he has been granted more flexibility with his HMO plan as compared to Medicaid, which means he once again choose his doctors as he pleases. In regards to the future of Medicaid, Sid is very uncertain what the plan will be like but predicts that it will be lopsided. Sid said it will hurt the disability community tremendously if the Ryan budget stays in place as it calls for people with difference abilities and senior to pay out of pocket for hospital visits and prescriptions, approximately $600 per year. This is not feasible for many people in this community as many rely on Medicaid to stay above the poverty line.

Sid has been fighting for the closure of developmental center for the last 20 years as a member/President of Helping Hands. The first thing said when we touched upon this issue was, “I don’t think my brothers and sisters should not be subjected to being locked up”. Although Sid has never been institutionalized himself, he has been able to recount the pain and suffering of his peers in the disability community that he has come in contact with who have been forced to live this way. For instance, Sid recalls going to a self-advocacy conference in 1998 where he met a girl from a New Jersey Developmental Center who had a habit of not being able to sit still for long periods of time. He witnessed this girl’s staff leader scold at this young girl and threatened that if she kept moving around for the remainder of the time they were there, the staff would lock the girl up in an enclosed room for four hours. Sid retaliated immediately upon hearing this, as he exclaimed how this staff had no right to treat her this way. Sid also mentioned another gratifying experience where he attended a panel meeting through the state of New Jersey, in which there was a discussion as to whether or not the North Princeton developmental center should close. Sid was granted the opportunity to speak before the panel where a few parents, protesting to Sid to mind his own business, verbally attacked him and that their child belonged there. This left Sid feeling very upset to the point where a staff from CAU had to calm him down. Sid has made many appearances to protest and speak to clients at institutions in New Jersey, which include North Princeton, Vineland, Woodbridge and Totowa. Sid remembers when former Governor Whitman of New Jersey signed into law in 1998 to close Woodbine, New Lisbon and Vineland. Although that didn’t happen as promised, Sid is very happy that Vineland will be closing down June 2013.

In regards to the waiting list issue that plagues many disability communities all over the United States, Sid would like to issue to be tackled head on. He remembers when the state of New Jersey in 1997 promised to eliminate the waiting list by 2007. However, this promise has not followed through as it is five years later and the list has grown exponentially. Sid was on the waiting list for benefits in New Jersey from 1984 to 1994, despite his previous attempts of applying for SSDI in the early 1980s. However, Sid emphasized that the reason why he was able to get off the waiting list was due to the death of a man in Plainfield, whose place he took for benefits. Sid believes it’s time to give everyone serves it, because it is desperately needed. In closing, Sid expressed to us that it is important to teach everyone with difference ability the, “value of advocacy and what it is all about so that people can make their own decisions and be their own person”.

Mark Bloom

Our last featured advocate of the month, Mark Bloom, has been a member of Community Access Unlimited since 1999. Mark has been an active advocate for a number of years now and has held numerous leadership positions in the disability community. Furthermore, Mr. Bloom is currently employed by CAU as he works in the cafeteria, and in the past, he has held a position at ACME Supermarket in Union, NJ. To highlight some of Mark’s leadership roles, past and present, he has been the Sergeant-of-Arms in Community Access Unlimited Helping Hands Self-Advocacy group, which is one of the oldest and strongest self-advocacy groups in New Jersey. Mark has also helped staff collect dues for members and staff at CAU. Currently, Mark is now the 1st Vice President of Helping Hands and will become the President once the current President, another advocate, Sidney Katz, steps down from his position in two years. Mark is also the vice-chair of the Statewide Network Council 2. Due to Mark’s dedicated work in the disability community, he has received a handful of awards that represent his diligence and passion for helping others. For example, he has received the ‘Advocate-of-the-Month’ award in August 2003 from the Helping Hands committee, the ‘Jane Miller Award’ from the NJ Self-Advocacy Project in June 2006, the ‘Community Star Award’ from NJACP in May 2006, the ‘Colleen L. Fraser Award’ in 2009 from Community Access Unlimited, the ‘Group Geller Award’ from Helping Hands committee in October 2011 and lastly, he is a 2007 graduate of Partners in Policymaking.

Given his vast experience, Mark has also attended many conferences sponsored by various advocacy and disability groups’ in-state and nationwide. To name a few, he has attended conferences held by AAIDD, SABE, New Jersey Self-Advocacy Project and the Disability Policy Seminar hosted by The Arc, UCP, AAIDD, AUCD, NACDD and SABE. With that in mind, Mark has formed strong opinions about current events in disability community and how national policies are affecting the viability of this population. In regards to Medicaid, which is on just about everyone’s mind in the disability community, Mark is very concerned and uncertain about the future of this program because people with disabilities heavily depend on its benefits. Due to the talks of major cutbacks allocated to this program, he fears that he and other members will have to start paying more than they ever have before and the burden of this possible reality is damaging. He says he has even noticed some minor changes in the program at the start of this year, at least in the state of New Jersey, as he has started to pay for services he hasn’t had to in the past such as ambulance rides and co-pays for certain doctors.
When it comes to closing developmental centers for people with disabilities, this topic makes Mark very frustrated. Although he has never been institutionalized, he feels for his peers that have been. He explained to us that he has gone to many budget hearings that take place in New Jersey every fall, where essentially it is an ‘open-mic’ and constituents are invited to voice their concerns and opinions. While Mark has never given his personal testimony at a state budget hearing, he has witnessed many and continues to see the same result. For the most part, only parents take the stage and protest about keeping institutions open while there are barely any self-advocates up there fighting for their rights. To Mark, these experiences reaffirm the fact that more self-advocates need to be educated so they can speak up and defend their rights. Mark has been an active participant within the Helping Hands Committee as they have gone to the Vineland Developmental Center in Vineland, NJ to protest its closure.

Before becoming a member at Community Access Unlimited, Mark was on the waiting list for receiving benefits in New Jersey for 10 years. Prior to 1999, Mark had attempted to become a member of The Arc in Union County as a means to get off the waiting list but was not granted support services. He found out about Community Access Unlimited by attending an Open House in the beginning of the summer, and officially became a member on June 28th, 1999. Having experienced what it is like to be on a waiting list for as long as he was, Mark feels very strongly about states utilizing pro-active and efficient strategies to serve as many people with disabilities as possible. Although this has been an issue in states all over the country, he feels that in New Jersey, what is said at budget hearings are false and government officials do not have people with disabilities best interest in mind. At the end of our conversation with Mark, he closed by telling us that, “I like to help because they (the disability community) need help the most. We need to teach new members about government and its policies that affect us so they can get involved and we can make a difference”.

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