Uncategorized – The New Jersey Council on Developmental Disabilities

In Their Own Words Report on Transportation Issue for People with I/DD

admin — Tue, 09 Apr 2019 17:08:12 +0000

Rutgers University – Center for Advanced Infrastructure and Transportation (CAIT)

In Their Own Words: Transportation Issues and Obstacles Facing People with Developmental Disabilities

The goal of this project is to undertake direct research with persons with intellectual and developmental disabilities (I/DD), including those living in developmental centers, in order to develop a comprehensive report on the issue of transportation and how it affects people with I/DD. After compiling 400 interviews, researchers will conduct quantitative analysis to develop a summary report identifying trends and themes, and to formulate recommendations. The project team will then produce a report that will include real-life examples and personal stories to put a ‘face’ on the transportation issue, which will assist in advocacy. The recommendations will focus on practical systemic issues as well as broader advocacy issues. The research team will develop a written summary as well as an audio summary. These two components can be used together or separately to disseminate the compelling stories of how transportation affects the lives and experiences of people with I/DD.

View In Their Own Words Report

The Big Business of DD

admin — Thu, 26 Dec 2013 18:25:37 +0000

There was an article on the front page of the New York Times recently that tapped into a part of the big business that has engulfed disability. This one is about how the drug companies and hysteria have combined to create an epidemic of ADHD diagnoses to, I believe, the great detriment of the young people being so rashly labeled, their families and, quite frankly, the individuals who are struggling with legitimate, serious symptoms of ADHD, their families and the rest of us who are trying to help them. http://www.nytimes.com/2013/12/15/health/the-selling-of-attention-deficit-disorder.html?ref=health&;_r=0 And it’s not just ADHD. Ramped up concerns about Autism and Autism Spectrum disorders (ASD’s) are also off the charts. http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip—How-huge-industry-feeds-parents-desperate-cure-children.html These things start out because of legitimate concerns parents have about their children. In the middle part of the 20^th century these concerns promoted an identification of serious disorders affecting a small percentage of children. In their first few years the children became withdrawn, began exhibiting abnormal, sometimes violent and self-injurious behaviors, failed to develop along expected paths, all of which seriously hampered their chances of having positive outcomes with their lives. Parents naturally panicked. Who wouldn’t? The panic increased as it became more and more evident that there would be no quick, simple, straight forward answers as to what was happening and why. The only thing scarier than knowing is not knowing. Those fears prompted some parents with financial and educational resources, and the time to marshal those resources to mount substantive campaigns to try to answer those questions. There has been significant progress in helping children with serious ASD and their families but there has also been a hysteria created around these disorders. Desperate parents have rushed to doctors and other professionals when their children exhibit challenging behaviors and characteristics. Money has flowed. Professionals followed the money and, predictably, huge industries have emerged. Nobody disputes that ASD, ADHD and other developmental anomalies can be devastating in serious incidences. And in less debilitating situations there have been tremendous benefits from an early understanding of behaviors that might make one’s life more difficult and some strategies that might help down the road, educationally and socially. However, the pendulum never quite stops where you want it to. I believe in certain ways it has swung too far. And not just in the over medication of children and adults with too much energy, too little focus, nasty tempers, rowdiness, laziness, more interest in the trees than the surrounding forest. Or in the tremendous attention, resources and, quite frankly, hysteria, that has risen up over the Autism and ASD epidemic. These are the most obvious examples but really, over the past thirty to forty years we have been in a labeling frenzy. Shy children end up with selective mutism. Boisterous kids end up on medications that sap their energy and creativity. Slower learners are pushed and so get more nervous and self-conscious and so are pushed some more and so the inevitable self-fulfillment syndrome is triggered and takes on a life of its own. We’re all very different but despite the lip service we pay to individuality in our medias we are still very much bound by group conformity. If you’re different, even temporarily, it is better if you are put into a group of “those people” who are also different in similar ways. Contradictory huh? But that’s the way we are. You’re either us or you’re part of some other them. Most of the kidsI have known, including myself, at one time or another could easily have been pegged as having one kind of problem or another. Adults too, though that usually sticks in childhood and stays with you from then on. Much of the time, thankfully, these periods pass, nobody overreacts, and the children are allowed to work through their bumps and detours. If they get an immediate label and/or diagnosis then that becomes a part of their stigma and, consequently begins to be a factor in shaping their behaviors and outcomes. I fear we’re doing that more and more and that now big business is a motivating factor. It’s not an easy thing to measure. I would be just as cautious about pulling that pendulum back too far in the other direction and losing some of the hard fought gains made for those who really need them. The downsides of a self-perpetuating growth in these industries though have serious consequences for individuals pulled in who would do fine and even better to not have specials attentions paid to them or, even worse, medications pumped into them. And it would be better for those individuals and their families who are struggling with the more serious manifestations of these disorders and are already underserved. For, we have seen time and time again, no matter how big and rich health care and social services industries get they are never fully equally distributed across the spectrum of need but are weighted toward those who are better positioned to secure those services. Again, that’s just the way things are. What are needed are more services, supports and attention for those who need them, not more people in the pool. That will happen naturally still for the foreseeable future without any ramping up of the rhetoric. Scratch the surface of any subtle hype along those lines and you’ll find the ol’ profit bugaboo Ulterior Motive, and that we don’t need in this field.

How Far is Too Far

admin — Sun, 20 Jan 2013 17:47:04 +0000

There was a news story this week about the challenges high schools have in working to include students with disabilities in extracurricular sports activities. Oscar Pretorius put the issue of athletes with disabilities competing at the top levels of sports with their non-disabled peers when he won his right to compete in this past summer’s Olympics. At issue in the Pretorius case was whether his advance-design artificial legs gave him an unfair advantage. The governing body eventually said no it didn’t and allowed his participation. Pretorius made a respectable showing in the games but didn’t look as if he had any unfair edge by any means. As more and more students with disabilities want to compete on their school teams, and can in many cases, education and other groups and organizations are working to catch up with demand and form some reasonable guidelines for how to move forward. We’ll keep tabs of those efforts as they unfold and talk about them here and other Council venues. Essentially it is a good thing that the issue is on the map and that students with disabilities are doing more and being allowed to do more. However, this and the question of higher education for students with cognitive disabilities raise some difficult questions about what inclusion really means and how should it be handled. Everybody shouldn’t be able to do everything. At the same time, those who want a fair chance at reasonable and meaningful participation should get that chance. The lines here are still very much in flux. As we move through these sometimes complex decisions I believe common sense and honesty are good tools to apply. There are certain basic criteria that dictate the evaluation of certain levels of achievement. Even before I was injured permanently nearly forty years ago I couldn’t palm or dunk a basketball. I loved basketball. Played religiously throughout middle school and high school. In the gyms and playgrounds of the city though. Not the school team. Why not? Simple. I just wasn’t good enough. It was disappointing, sure. But it was one of the many things I learned through that period that I wasn’t going to be able to do. Not smart enough, fast enough, strong enough or rich enough. It’s one of life’s most important lessons. Everybody doesn’t have a right to do everything. There are going to be more things we can’t do than we can so we’d better get used to it. And if we lead people to believe it is, or should be, otherwise we’re doing them a disservice. Denying people opportunities is not what I’m talking about here. It’s being honest with them and ourselves about what opportunities are really meaningful to open up. I’m all for working for people to have opportunities to experience and participate in things they have long been denied. No doubt people with disabilities have been excluded from many opportunities they should have. Advocating to break down those barriers is at the core of what advocacy is all about. But let’s be honest. Not everyone is going to participate in the Olympics. Nurturing dreams is great. But don’t oversell it. Getting a college degree has become an expectation. In too many cases a necessity. I think that’s unfortunate. It used to be that college was a path for some. Other paths were for others. Now with everybody expected to get some kind of college degree the achievement has lost too much ot it of its meaning and clout. A degree loses something if it’s not defined by a more rigorous intellectual performance than everyone can achieve. It is okay, and even essential, to have different paths and levels in life. What’s not okay is when we over value some and under value others. A shared advocacy goal should be to promote high levels of respect for all levels of contribution. This way we are not falling into the trap of pushing people into unreasonable situations, with trumped up expectations; or of altering useful definitions and thereby diminishing outcomes for everyone.

Overreaction

admin — Fri, 04 Jan 2013 17:39:32 +0000

Overreaction against people with Autism from the terrible shootings in Newton Connecticut. It is an understandable concern given the prominence given in early media reports to the shooter’s supposed Asperger’s syndrome. It is right for those who have developmental disabilities and those who live and work with them to be on guard against stereotyping fears and other misconceptions. Using broad labels to characterize individuals is always a bad idea. In emotionally charged situations it can be very damaging and even dangerous. But overreacting on the part of individuals with developmental disabilities and their colleagues can be equally dicey. So far there are no indications that the tragedy in Newton is spawning any irrational outbursts against people with developmental disabilities. Nothing wrong with having watchful eyes. Those who try to whip up fears and subsequent actions unnecessarily though, can do much harm. Advocacy is not simply knowing when to act and doing so, it is knowing when not to act. Too many times I think we raise the alarms because we are geared that way. Meeting the challenges of public misconceptions about people with disabilities is one of the primary activities of advocates, their groups and their organizations. Most of the times it is okay to whip up some heat out of thin air. However, in highly charged situations such as the aftermath of the shooting in Newton, it can fuel dialogue and debate where none was forthcoming. It’s like that scene from the movie “All the President’s Men,” about the Nixon Watergate scandal, where the reporter tells his bosses that the White House denied that one of their people was involved. “Isn’t that you expected,” the one editor asks? “Absolutely,” the reporter says. “But I never asked them about Watergate. I only asked if Hunt ever worked at the White House.” Advocacy is a little bit like public information and, yes, even the much maligned public relations. They all seek to ensure that public opinions are formed that benefit constituencies. In my opinion, that goal is best served through the dissemination of accurate, truthful information. Sometimes in the heat of rapidly changing events the parameters of the information are ill defined. So the medical, Hippocratic model is a good one to adhere to—first do no harm. This post-Newton situation is still fluid. Isolated incidents will undoubtedly crop up where individuals who are “different” are further stigmatized and ostracized. Any bullying remains a serious and ongoing threat to people with developmental disabilities, mental illnesses and others. In my tracking of the discussions about Newton I haven’t seen enough about how our so-called “human” (I would say tribal) tendencies to reject those who are different from us and ours exacerbates the anxieties of troubled loners, sometimes pushing them closer to whatever their obscure and unknowable breaking points are. This is an ongoing advocacy effort we can all get behind, now, in the upcoming weeks and for years to come. On the specific fears of a sweeping backlash against people with developmental disabilities in the wake of Newton though, it seems that media reports are treating this factor, appropriately, as one of many and not one that carries a great deal of weight in defining the actions of Adam Lanza. Early concerns of an Autism/Asperger’s backlash have so far, thankfully, not materialized. There has been a great deal of attention paid to mental health issues. These bear watching. Stigmatization of anyone for a label or condition they share with someone involved in highly publicized incidents affects us all. Simply because it is not “your group” or “your type” that is targeted doesn’t mean it won’t be next time. We all need to stand up and denounce such stigmatizing, no matter the origin— disability, mental state, ethnicity, religion, gender, gender preference, what have you. As the stories unfold out of the Newton tragedy let’s not start fires to be put out. There is plenty of other work to do—across the aisle with our counterparts in the mental health field; with school personnel on ways to reduce the sense of “other” and “un-belonging” among those students who are a little different from their peers; and with the rest of the community to promote rational discussions around how best to minimize the damage when those efforts and all else fails

A Week of Remembrance

admin — Thu, 13 Sep 2012 14:52:44 +0000

Earlier this week we all remembered the tragedy of Sept. 11 2001. This horrific day affected everyone across the country. We are still occupying Afghanistan to prevent factions with similar designs of the United States from reestablishing a national foothold to support their terror. It is also a time of painful remembrance for those who knew people killed in those attacks. Our community remembers Colleen Fraser. Colleen was chair of the Council on Developmental Disabilities when I came to work for them in 1994. The council had recently gone through an upheaval. The focus had shifted from an agency not just connected to the state Department of Human Services and its Division of Developmental Disabilities as an administrative convenience, but philosophically and programmatically in lock step with the state in violation of the spirit and letter of the federal legislation governing the nation’s councils on DD. I believe Colleen might have been the Council’s first chair with a disability. If not, readers please correct that for us. In any case her tenure oversaw a time when the Council’s membership and leadership evolved significantly. And she presided over one of the Council’s most significant advocacy efforts of the 1990’s—the call for and support of the closure of North Princeton Developmental Center. Although Colleen had stepped down as chair by the time the facility was closed, she served as the chair during several of those tumultuous years prior to the Whitman Administration’s decision to close NPDC and into the first year of planning the closure. Those earlier years were filled with strong, often contentious advocacy, to get institutional closure into the public discourse and make the case for it. The focus at that point, promoted in large part by advocates like Colleen, was on the people who lived there and the damage continued institutionalization was doing to them. Arguments for sound public policy, national trends, fiscal responsibility, crumbling infrastructure, were all being discussed as well. But the primary necessity for Colleen and other advocates with disabilities and their colleagues was the well-being and rights of people who lived in the state’s developmental centers. Remember, at that time Mary Kay Weber, former vice chair of the Council, was a resident at North Princeton. It’s really unbelievable to think that people we know and work with once lived in institutions and that there are still thousands living there now in New Jersey. So I thought it was a good time remember what Colleen did with her life before she died too soon, too horribly. Remember that the work she did on behalf of people with developmental and other disabilities is ongoing. Remember how long it took to get the state moving on closing DC’s and remember how long it took to come back to it now with the current Two-DC closure plan, announced but yet to be fullfilled. If Colleen were hear she’d be asking to see the plans, see the timetable, be kept apprised of each stage of the progress. She’d want to keep in everyone’s consciousness that there are real people involved. They’ve been waiting. They’re still waiting. This is what she’d want us to remember during this week of remembrance. That it’s up to us now to do it for her, and for them