During part one of this three-part special, Steve Adubato goes on-location to the 2018 Russ Berrie “Making a Difference Awards” to talk with extraordinary unsung heroes who change lives of New Jersey residents through community service and kindness.
Guests Include: Eileen Goff, Founder, Heightened Independence and Progress
Don Quigley, Co-Founder, Society for the Prevention of Teen Suicide
Jodi O’Donnell-Ames, Founder, Hope Loves Company
Jack Fanous, Co-Chair, New Jersey My VA
Tricia Baker & Kurtis Baker, Co-Founders, Attitudes in Reverse
Melissa Gertz, Founder, Community Justice Center
Every minority struggles for its independence regardless of what the law says. No law waves a magic wand and the doors of freedom automatically open. Those who are oppressed must pry the doors open by using the law. Laws that are not used become meaningless pieces of paper. Passed in 1990, the Americans with Disabilities Act (ADA) gave people with disabilities access to the community. It is now up to people with limitations to become active participants in society as the ADA intended.
Curb cuts, ramps, accessible transportation, and laws against discrimination in the workplace give people the ability to freely move about the community. They enable people to shop, to go out with friends, to take advantage of educational and recreational opportunities, to seek employment and voice their concerns at town meetings. The law calls for equal access and it is up to people with disabilities to use their freedom. One of the findings that influenced Congress to create the Americans with Disabilities Act was that people with disabilities were isolated from the larger community.
It was hoped by people who worked so hard for the passage of the ADA that people with disabilities would view their new found access as a chance to become true members of society. One of the biggest barriers against people with physical and/or mental challenges that still exist in the mainstream is attitude. Only people with disabilities can change people’s perceptions. After all, we have been given the tools, and now we must use them.
For example, a shopkeeper will willingly make his store accessible if he knows he’s going to gain customers. The Americans with Disabilities Act is like a tennis match; the ball is in our court. In this day and age, money is the coin of the realm. Green is green whether it is earned (a preferred option) or it comes in the form of a government check. People with disabilities and their family members should go out of their way to patronize businesses that have obeyed the law and made their establishments accessible. They should also spread the word that a store has complied with the law.
A case in point was the corner store in my neighborhood. Years ago the owner placed a ramp to the door of his business. After the store was made accessible, my companion, James Stoney, always used that store to buy his cigarettes. It angered Stoney when the businesses around the accessible store continued to have a “step up” ignoring the law. He created his own boycott!
Another example of activism is as follows. Paulette Eberle and others sued NJ Transit to gain access to mass transit. With walker in tow, I stood with Paulette to stop buses requesting access. I used a walker and needed the lift. When buses denied access, we would take down the bus number and registered a complaint.
Paulette is the true hero of gaining access to mass transit. She, along with her colleagues from NJ Citizen Action eventually took a video camera to record buses that would not let their lifts down to create access for those who are unable to board the bus in the traditional way. When ready, Paulette and the others involved took the case to court, and they won! The Americans with Disabilities Act (ADA) calls for barrier-free access in all areas of society including transportation. It is the obligation of people with disabilities to see that the ADA is enforced. The late New Jersey activist Colleen Fraser once remarked that people with disabilities must be the “police force” that ensures their freedom.
Without people with disabilities demanding access, the ADA and other laws calling for it become quite meaningless. To be fully included in society takes work, and it is the responsibility of people with disabilities to take charge of their own lives. If people do not have full equality under the law, they have no one but themselves to blame.
The fight for equality for disability rights started at the University of California, Berkeley. Known also as the “Independent Living Movement,” its founder was Ed Roberts who started his career as a disability rights activist when he was in high school. He was paralyzed from the neck down as a result of polio, which he contracted at the age of fourteen (two years before the Salk vaccine ended the epidemic). As a result of his bout with polio, he was left with the use of two fingers on one hand and several toes. Until his mother insisted that he attend school a few days a week, Ed participated in classroom work by a phone hook-up in his home.
It was in school that he experienced prejudice and discrimination because of his disability. The source came not only from fellow classmates but teachers as well. It was at school where he was forced to think of himself as a “star” rather than let others define him. He was denied a diploma because he was not able to complete the physical and driver education course requirements. That denial was the start of his career as an advocate.
His fight for equality continued at the University of California, Berkeley. His first struggle was with the California Department of Vocational Rehabilitation (DVR) to obtain sponsorship for the right to attend college to prepare for employment. Once he got there he experienced discrimination on many fronts during his college years.
His admission into Berkeley was the start of the Independent Living Movement. Roberts’ acceptance at the University opened the door for other students with disabilities. One of the problems he and his fellow classmates with disabilities faced was housing. The misconception that disabilities are illnesses caused the administration to segregate the group into what became known as the Cowell Residence Program. While Cowell was primarily a medical facility, Roberts would only accept the living arrangements if it were treated as a dorm.
Ed along with his fellow classmates, who also had physical limitations, soon formed a group known as the “Rolling Quads” and eventually created the Physically Disabled Students Program (PDSP). They fought for curb cuts which gave them wider access to the community. PDSP was soon giving information and referral to the larger disabled community and Ed Roberts was off to Washington, D.C. to gain funding through a federal start-up program.
While Ed Roberts did not create Centers for Independent Living (CIL) he did have the opportunity to lead the first CIL in the country after receiving a Masters from Berkeley in Political Science. Forty years later these centers are in every state in country as well as in many countries throughout the world fulfilling the needs of the disability community.
The Independent Living philosophy postulates that people with disabilities are the best experts on their needs and therefore they must take the initiative, individually and collectively, in designing and promoting better solutions and must organize to assert their influence and political power. The IL movement stresses inclusion, self-representation and an understanding of all disabilities.
Individuals with disabilities have always been the driving force in their fight for independence. They cannot surrender it to others. They must direct their own lives. Free people take charge; they do not wait to have freedom handed to them.
Join me in celebrating the 28th anniversary of the American with Disabilities Act (ADA)!
Ms. Valls is a longtime member of hip living in Hudson County and has been published in several journals and publications on issues affecting people with disabilities.
Are you an adult age 18 or older with an ongoing health condition or a Caregiver? If so, then the free 6 week Take Control of Your Health workshop series is for you! Free refreshments and a gift upon completion!
Dates: Fridays September 14th, 21st, 28th October 5th, 12th, 19th Time: 10:00AM – 12:30PM Location: Heightened Independence and Progress Center for Independent Living (HIPCIL) 131 Main St. – Suite 120 Hackensack, NJ 07601
Come & Join Us! Classes are held once a week for 6 weeks for 2 1/2 hours each and taught in English. Classes are being offered by HIPCIL and the Bergen County Dept. Of Health Services. Pre-Registration is required! To Register please contact: Jayne Jacobs 201-996-9100 ext. 26 or Maria Valentin 201-996-9100 ext. 18
The families of people with intellectual or developmental disabilities know the difficulties of navigating state bureaucracies in search of help. They’re often aren’t aware there is help, but now they have a state-appointed ombudsman to work on their behalf. Correspondent Briana Vannozzi sat down with Paul Aronsohn to discuss the new role and what he hopes to accomplish.
Vannozzi: Advocates, family members, caregivers, even, are going to learn about this role and are going to say, ‘Well, it’s about time.’
Aronsohn: Absolutely. This has been long overdue. You know, this population we’re talking about, people with intellectual and developmental disabilities and their families, it’s so hard to navigate the system as it exists. So it’s really important to have an advocate to have help out there to find their way.
Vannozzi: So what will you do as ombudsman? What does the role entail for the state?
Aronsohn: Well, the main purpose is to work with individuals with intellectual and developmental disabilities and their families to help them get the services and supports they need and deserve. So, that means a few things. That means helping them navigate the system, which can be a little bit confusing and overwhelming, to find those programs that they need. It can be to work with them to look at ways to improve the system — better communication, different programs, different policies. But, ultimately it’s about making sure that the voice of the individual and their families is heard, and it’s heard in a meaningful way, and that they’re involved in the decisions that are affecting them.
Vannozzi: You’ve had already a long work life in government, public sector, advocating on this issue. You have three siblings who have informed you about this work. Tell me about that.
Aronsohn: Yeah, so, all three of my siblings have had a mix of disabilities and medical conditions. One of my sisters, Patty, actually passed away last year. It’s really through her experience and through her life that I learned and became impassioned about disability issues.
Vannozzi: So how does that inform your work? What do you plan to focus on?
Aronsohn: Well, it informs my work because anyone who comes from a family with disability, we’ve had sort of a front-row seat so we see the struggles, the challenges, that are faced by families, so it informs your understanding better. And so you take that understanding, you take that passion, and you bring it to every situation, you know, every family that comes to us.
Vannozzi: I can tell you, I mean, I’ve done extensive reporting on the issues facing families, individuals with intellectual and developmental disabilities. What I hear from them is health care and mental health care is fractured. Since the Christie administration moved the Division of Mental Health Services to the Department of Health, at least anecdotally and through many stories that I told through them, the care is more difficult to access. Why is that and what is the rule of the ombudsman going to do to help that?
Aronsohn: Well, yeah, it is. The good news is that New Jersey provides a lot of supports and programs for folks with disabilities. The bad news is it’s so difficult to navigate.
Vannozzi: Why is it so difficult to navigate?
Aronsohn: I think it’s a combination of reasons. I think there’s so many different programs, so it can become confusing, that have different eligibility and different applications. I think there can be an improvement in terms of the way that we communicate with folks. One of these things I’ve noticed is, that again, there are these great programs in Trenton, but the folks that live in the communities throughout New Jersey aren’t aware of them. So there’s a disconnect somewhere and that’s where we aim to sort of fix. We hope to bridge that disconnect and make sure that people understand what’s available to them.
Vannozzi: What are some of the programs? NJ Able is one of the newest ones. What is that? Tell us what that is and what it will do for folks.
Aronsohn: In New Jersey, Able is based on a federal program and that allows folks to save their money. So, it allows them to put their money away, just like anyone else with or without a disability. But there is a whole slew of programs that are available — residential programs, day programs. There’s a lot of support that’s there. The key is just to help people access it.
Vannozzi: Is there enough support for the amount of individuals with these disabilities? It’s something like 22,000 in New Jersey. Is the state offering enough to reach all of the state? Not just those cities where most of the population is living.
Aronsohn: Sure. I can’t say whether we have enough right now to reach all of them, and that’s something that we need to work on. We do have a lot of programs and a lot of services, but there are gaps. I mean, for instance, for those that are called dual diagnosis, those with intellectual and developmental disabilities, as well as mental health challenges, there’s a lot of work that needs to be done in that space for those individuals. There’s a lot of work that needs to be done, I think, to sort of fill the gap between when a child with IDD becomes an adult with intellectual development [disability].
Vannozzi: That’s a huge issue. Once they age out, as we say, once they’re 21 and older, there’s so many resources in place during that age group. But once they become an adult, it gets really difficult.
Aronsohn: It becomes difficult because, I think, there’s just a lack of understanding. I think there’s an opportunity here to educate folks. Because, right, we have the children’s system of care, which provides services for kids up to 21. And then the Division of Developmental Disabilities takes over when they’re 21. There are a lot of programs and supports on both sides of that 21 age mark, but a lot of people don’t know about it. And so what we need to do is reach down into the communities, educate families better, early, before they turn 21 to make sure they are aware what they need to do to access those programs, to access those services.
Vannozzi: Part of your charter is that you’ll be issuing an annual report to the governor, to the Legislature. Quickly, if there’s a number one issue you’re going to advocate for, or to recommend, what will that be?
Aronsohn: A number one issue? Well, I’ve been doing this for ten weeks, so I’ve got a bunch of issues that I’ve been kicking around. I mean, one of them is this transition from child to an adult because, again, we know that every child with an intellectual or developmental disability is going to be an adult with an intellectual developmental disability. We know that transition is going to occur. And so to me, that is a low-hanging fruit that we need to sort of step up and fix to make it so that it is a seamless transition for those families.
Despite the fact that June broke records for hot weather, it was a busy month for hip. We held our Annual Picnic, participated in the Aurora 5K Walk and the Bassmasters 30th Anniversary event, and had some fun with pottery as part of the Women’s Group. We celebrated the 40th Anniversary of the Bergen County Division of Disability Services, participated in the “Stigma Free” event in Fort Lee, and joined our colleagues from the other Centers for Independent Living for a Legislative Day in Trenton.
Not all of the activities at hip offer us high-profile interactions with the community, which is made evident by our one-on-one work with the consumers through our Care Management Programs. I’ve just had the opportunity to meet with our Care Management team to review their cases, and I have been impressed by their professionalism and compassion for residents of Bergen County facing a multitude of challenges and barriers.
Funded by the Bergen County Department of Human Services, the Care Managers can provide assessment, direct services, referrals to community-based programs, and coordination in the following areas:
Assistance in applying for:
Social Security Disability Insurance (SSDI)
Supplemental Security Income (SSI)
Managed Long-term Support Services (MLTSS)
Assistance with applications for:
Pharmaceutical Assistance for the Aged and Disabled (PAAD)
Low-Income Home Energy Assistance Program (LIHEAP)
Meals on Wheels
Durable Medical Equipment
hip is able to provide an amazing array of services to strengthen the ability for individuals and families to thrive in their communities.
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