Category Archives: Disabilities rights

A Valuable Lesson

They say a picture is worth a thousand words. Today’s post is a fine example of that:

The above picture is from Lisbon (taken a few months ago). Wheelchair users and volunteers placed wheelchairs in the available non-disabled spots in a parking lot. The goal was to make able-bodied drivers understand what it’s like to have their spots occupied.

Additionally, notes were placed on each of the wheelchairs. The notes said “Just getting something here,” “I’ll be right back” and “It only takes me a moment.”

Hopefully the drivers learned a valuable lesson.

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Double Booked: The Real Costs of Disability to Working Families

This post originally appeared on the Religious Action Center of Reform Judaism blog.

Allison WohlBy: Allison Wohl

When our youngest son was born in 2009, I was climbing the ladder at a Big 4 consulting firm doing management consulting for the federal sector. My firm had generous benefits, “wellness” benefits (they paid for my gym membership), a 401k match. They let me expense my cell phone, offered short-term and long-term disability benefits and paid personal leave. This firm even has a generous parental leave policy, but I doubt that they would still employ me in my current circumstances.

When Julian was born with Down syndrome, the consulting career I knew was over. While our son is healthy, he still requires more than most typical work settings can tolerate. He has doctor’s appointments, school meetings, and speech therapy. Since he is only 4, these things are still fairly simple. But as he gets older, there will be more uncertainties and fewer child care options. For instance, It is unlikely that our after care provider will take on Julian when he goes to kindergarten; providers often cite “medical concerns” but in reality they are fearful of what it would mean to bring a child with a disability into their environment. They believe that their staff doesn’t have the resources. And at a certain point, child care can become more expensive than a family’s income can absorb.

I knew that I would be able to use the valuable consulting skills I’d acquired to advocate for my son and others like him. I now run a coalition of 22 national groups that work for the full inclusion of Americans with disabilities in every facet of life. Most of my colleagues are family members of people with disabilities or people with disabilities themselves. When I say that we have a doctor’s appointment, I am supported. And I have flexibility and control over my schedule, which is invaluable.

But that flexibility comes with real costs. My salary is less than one-third of what it would have been had I stayed on my career trajectory (and even less than it was before I went to business school). I have no IT help desk, no support staff, no benefits, and certainly no 401(k) match.  Thankfully, my husband works for the federal government, so we do have health insurance and some measure of consistency. But not all families have these options.

The Wohl family

The Wohl family

This path has been my choice and one I made enthusiastically. The work I’ve done over the past few years has been the most important of my career. I benefited from the corporate world but longed to do work that was more meaningful to me.  In my current position, I happen to also have a vast support network and a job that allows me work flexibility to meet the demands of my family’s life.

But what about the single parent who must stop working because her child requires round-the-clock care? There are millions of children with disabilities and/or childhood diseases, and caring for these children, which most parents are honored to do, is expensive in so many ways.

It has been estimated that providing supports for a person with a disability would cost an individual family between $2 and $3 million over the course of a lifetime. Few families in this country can afford such supports. One family I know lost their house while their adolescent son was on a waiting list for adult services; in the meantime, they had to foot the bill for his medical insurance and ended-up filing for bankruptcy. Sadly, this is not an unusual scenario.

Kofi Annan said that “the happiness of any society begins with the well-being of the families that live in it.”

Our society—through government policy and private workplace supports—must do a better job of meeting the needs of working families because without such supports, our society is fragile. If our only goals are maximum productivity and efficiency, we have lost our most valuable assets: community and compassion.

Allison Hassett Wohl is the executive director of the Collaboration to Promote Self-Determination, a coalition of 22 national groups advocating for the full inclusion of citizens with significant disabilities. She is the mom of three boys, the youngest of whom has Down syndrome. CPSD is a partner of the Ruderman Family Foundation. Follow CPSD on Twitter or Like them on Facebook.

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Is Ratifying The U.N. Convention On The Rights Of People With Disabilities Necessary For The U.S.?

Susan ParishBy: Susan L. Parish, PhD, MSW

US Secretary of State John Kerry, in a brief statement at the United Nations last fall, argued that the US has one of the strongest disability rights laws in the world, and he was right. So then, why should the United States also enact a treaty, the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD)? The answer is actually simple. As good as it is, our ADA doesn’t go nearly far enough.

The United States enacted sweeping civil rights protections for people with disabilities in 1990, when the Americans with Disabilities Act (ADA) became law. The ADA provides the United States with one of the strongest frameworks to assure the civil rights of people with disabilities. It prohibits the all-important discrimination in employment, requires employers to provide disability accommodations for employees who need it, and it requires any establishment that serves the public to be accessible to people with disabilities. It was watershed legislation when it was signed into law, and it remains a model for the world. In 2008, in a direct smack-down to the Supreme Court’s series of decisions weakening the ADA’s protections, Congress passed the ADA Amendments Act and further solidified strong federal support for people with disabilities.

So why doesn’t the ADA go far enough? I have been pouring through mounds of data about this topic recently and my excursion into the data confirms what we in the disability community know: the ADA is not sufficient. Even 24 years after its passage, thousands of US students with disabilities still spend most of their day in segregated classrooms, out of sight and mind of their nondisabled peers. Employment rates for men and women with disabilities remain woefully low. A paltry 21 percent of working-age adults with disabilities are employed full time. And due to inadequate education and low employment, poverty rates are exceptionally high: more than one-fourth of adults with disabilities who live outside of institutions live in families that the US government deems poor. People with disabilities and their families are the poorest group in the US, and they often live with hardship and deprivation, including food insecurity, housing instability, and unmet medical needs.

Signing the ADA into law

President Bush signs the ADA into law in 1990 (courtesy: http://bit.ly/1pDHQiW)

How could the UN Convention on the Rights of Persons with Disabilities help? Why must we encourage the US Senate to pass the UNCRPD? Ratification would provide a clear framework to fully protect the values we share about respect, dignity and independence for children and adults with disabilities. Ratification would strengthen the civil rights protections that are already available to people with disabilities in the US. It would send the clear, unequivocal message that as a nation, we are fully committed to ensuring that people with disabilities live full and rich lives as citizens in their communities, participating in everything society offers. The ADA has not made full inclusion a reality for many Americans with disabilities. The baton should be passed to the UN Convention, which was built on the framework of the ADA, but goes further. The Convention will require the federal government to assertively promote disability rights, a step that is vitally important today.

The US is overdue in stepping up and offering leadership in the area of disability inclusion. Total ratifications to date: 145 nations. Israel, nearly all developed countries, and most of the developing world has already taken the step of ratification. Last December, when the US Senate considered the matter, the vote was five short for ratification.

US Senator Tom Harkin, a distinguished champion of inclusion for people with disabilities, has stated that he plans to work this summer to secure passage of the CRPD. I can’t imagine a better way to spend the summer months than fighting for the rights of people with disabilities.

Susan L. Parish, PhD, MSW is the Nancy Lurie Marks Professor of Disability Policy, Director of the Lurie Institute for Disability Policy, and Associate Dean for Research at the Heller School, Brandeis University. Her research aims to improve the health and well-being of children and adults with disabilities and their caregiving families. Follow the Lurie Institute on Facebook and engage Susan directly on Twitter.

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Pushing Towards The Tipping Point

Jay RudermanBy: Jay Ruderman

Those of us who advocate for the full inclusion of people with disabilities in our community have made tremendous progress over the last few years, but we still have much work to do until we reach the point where the value of inclusion has become an integrated and accepted value of our entire community. I am proud of the role our foundation has played in this process and we intend to continue to seek a leadership role in the promotion of inclusion as an indispensable Jewish value. We believe that this blog continues to play an important role in making the case for inclusion. Today’s post represents our 300th post and we are proud of the tens of authors we have featured.

No one of us alone will be successful in reaching the tipping point where inclusion is an accepted value in our community. The advocacy for inclusion should be a combined effort of all of us who make up the disability community: self-advocates, families, siblings, NGOs, community organizations, funders, activists, employers, elected officials, governmental agencies and religious leaders. In short, a combined effort that brings together all segments of our society into a powerful network which will speak in a loud and clear voice that the inclusion of people with disabilities in our community will make us a better community for all and will bring us to the tipping point. Our foundation is actively exploring the creation of such a network, so stay tuned here for updates.

Work TogetherYou may be asking yourself: Yes but what can I do now, today, to promote a more inclusive community? Well, for one, I encourage you to share our blog posts widely to your contacts and communities. Share our posts on Facebook, Twitter, Google Plus and anywhere else you find appropriate (and follow our foundation on social media).

Additionally, if you are not engaged on social media, join today! The creation of a network that will change our community’s values to become more inclusive depends on all of us becoming active on social media and reaching the largest audience possible. Our voice must be multiplied and heard loud and clear by our entire community.

I want to thank all of you for your readership, advocacy and friendship. The advocacy for inclusion will necessitate all of us working together. I firmly believe that if we work together, we will accomplish our collective goal: the creation of a fair and flourishing community.

Jay Ruderman is the President of the Ruderman Family Foundation. Engage with Jay on Twitter and join the conversation on Facebook.

 

 

 

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Inclusion’s Final Frontier: Socialization

David MarcuBy: David Marcu

The focus on the basic right of inclusion for people with disabilities in our communities has naturally made major inroads in areas such as employment, schools, places of worship and elsewhere. While significant challenges remain to make our society and communities more inclusive, much headway has been made.

Still, it behooves us to carefully examine the quality of inclusion and not just the quantity. Do workers with disabilities receive the same social benefits in the workplace as their peers? Do students with disabilities who are included in regular classes truly feel a part of the social milieu of their peers? Do our houses of worship merely serve as places of gathering or prayer, or do their members with disabilities enjoy the same social benefits as others?

I would not wish to generalize, but anecdotal evidence seems to indicate that the glass is more than half empty. Colleagues at work often meet after hours, go for a drink, share social experiences. Too often, their colleagues with disabilities, particularly those with developmental disabilities, may be invited to the occasional wedding, but not much else. Schools may provide academic studies, but too often students with intellectual disabilities who are included in regular classes find themselves the target of isolation, and often worse.

Our organization, Israel Elwyn, in partnership with Israel’s Ministries of Social Affairs and Social Services and of Education, the National Insurance Institute, Ashalim-JDC and local governments, has undertaken a pilot program known as “Reshet” (“network” in Hebrew) to reach out to and support young people with disabilities in inclusive high schools and help prepare them for the world of adulthood. This pilot project, currently operating in the south of Israel, provides these young people with the tools to prepare them for their first military call-up, for employment and for the world of continuing academic studies. No less important, the project has introduced weekly social clubs where these young people meet with others who also have disabilities, often a rare experience for them. The enthusiastic response of these youth to the social experiences they enjoy with their peers caused me to wonder: “how inclusive is this experience”?

The answer is not a clear one, but the need is nonetheless compelling. While not all the participants in the Reshet program express feelings of social isolation at school, quite a few have. Let’s hear two of them in their own voices:

Dror (left) and his peer Yotam (credit: Yaron Samimi)

Dror (left) and his peer Yotam (credit: Yaron Samimi)

Naor, when asked about socializing in school, responded “My social situation before I joined Reshet was not good. I didn’t know anyone and always sat by myself at school and at home played with my computer. Even now, I feel like I go to school just to pass the time. I feel bad about this, and don’t really have anyone I can call my friends. In the Reshet program, I feel better socially, people listen to one another, want to get to know each other and there aren’t any levels of social status.”

Dror reports: “In school, I don’t have any friends. There are maybe two or three people who don’t ignore my existence, but even with them, they usually laugh at or curse [me]. Students are difficult, loud and disrespectful. In Reshet, I have finally found a good place, where I can express myself and where we can laugh together about everyday things and not where people laugh at each other. I can’t wait for the time each week where we get together and sometimes we arrange to meet in the afternoon outside the program – something which you can’t take for granted.”

Inclusion needs to be about more than just functional involvement in the activities of society. It must be about how we all reach out and include people in every aspect of our lives. The students in the Reshet program are learning critical socialization skills that will, it is hoped, serve them when they move onto adulthood. But as with all aspects of inclusion, the disability lies not within the individual, but within our society and our communities. I encourage us all to make greater efforts to make inclusion not just a slogan, but a comprehensive way of life.

David B. Marcu is the CEO of Israel Elwyn, an organization that provides support services for children and adults with disabilities and their families. He is a past president of the International Association of Jewish Vocational Services, and is a member of the board of directors of the Israel Council for Social Welfare and the professional advisory committee for youth and disabilities of “Tevet”, the employment subsidiary of the JDC.

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It’s Been 24 Years

Jerry AikenBy: Jerry Aiken

The American Disabilities Act (ADA) was signed into law back in 1990 to ensure that people with disabilities were not discriminated against for employment and that accommodations were made to provide physical access to facilities. As a country we have made great strides over the last 24 years, but by no means have we fully accomplished the goal. One can look at the employment of people with disabilities and identify model companies that have and are making a difference. One can look at advances in schools and progress toward more inclusive classrooms. One can look at physical access accommodations that are for the most part universally available.

All this being said, the true reality is that we as a society still have a long way to go. Every day, children with disabilities and their parents are faced with their child not being able to participate. It usually is not because a group or organization does not want to include a child with a disability. The opportunities are not there because most do not know how and are concerned that they cannot properly support or handle potential challenges. They are concerned that they will fail the expectations of the child, the parents, and others that attend their programs.

The National Inclusion Project’s mission is the inclusion of children with disabilities. Our focus is to open doors so that a child with a disability has the opportunity to participate in typical activities with their peers. With a concentration on out of school time programs, the Project has worked with community organizations around the country to help remove any concerns through training, support, and life examples of how to include children with disabilities. We do not ask nor do we want an organization to change their programs totally or create specific activities for those with disabilities. We work to help them understand that through slight modifications most children of varying abilities can be included and that the most important aspect of any program is to get to know the child. To treat each individual the same, with understanding and respect. By getting to know the child and having open communications with parents, programs will have paved the way for a successful experience.

children playing together

At JCC of Greater Washington – Camp JCC

Working with many partners over the years ranging from after-school programs, parks and recs activities, summer day camps, residential camps, etc., we see that if the opportunity is provided and the leaders allow kids to be kids, great things can be achieved. Individualism will shine as children of all abilities get involved, participate, make friends, and have fun. Certainly there are occasional bumps in the road (which happen in all inclusive and exclusive opportunities), but the long-term benefits far outweigh any temporary setback.

One of our JCC partners went from exclusive to inclusive. “In the past, the Levin JCC’s Camp Shelanu had ‘accidental inclusion’ – there were campers with disabilities who attended, but with no extra staff, no training, and no accommodations. Campers often ended up on the sidelines – in the room with their group but not really participating, or by themselves being ‘babysat’ by a staff person,” said Madeline Seltman.

“With the help of the National Inclusion Project, Camp Shelanu’s staff were all trained in the philosophy that ALL campers can succeed and make friends, and given the tools to help make that happen. One camper’s mom said that Camp Shelanu, with its supportive inclusion program, was the first time her son wanted to go back to a camp on Tuesday morning!”

The social inclusion of children will make for a much better society tomorrow. Kids participating in various recreational activities today participate in play together despite differences which will lead to better understanding and acceptance in the future. Friendships developed in a play-based environment are extending beyond the boundaries of a given program. Kids develop a sense of belonging that will become an expectation, not just on the playground or at camp but in all aspects of life. Parents will see a difference and seek to be more involved with their community.

The National Inclusion Project believes that no one should sit on the sidelines! If your organization is not inclusive or are not taking the steps to become inclusive, what are you waiting for?

Jerry Aiken is the Executive Director of the National Inclusion Project. The National Inclusion Project serves to bridge the gap that exists between young people with disabilities and the world around them.  They partner with communities and programs to teach others how to be inclusive so that kids with and without disabilities can experience lifelong benefits.  By driving the movement for social inclusion in after school programs, summer camps, and in the classroom, children of all abilities learn, play and serve together.   To learn more, enjoy this video or follow NIP on Twitter

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The Fair And Right Thing

Sharon ShapiroBy: Sharon Shapiro

Around my office are constant reminders of my Dad.  A picture of my father with my son sits on my right, another photo of my dad is on my left, and on the wall hangs a framed poem about my dad’s generosity to the Boston Jewish day school community. This rhyme stands out to me:

“Mort Ruderman cared for everyone
his warmth was genuine and true
He followed Rabbi Akiva’s saying
for he loved every single Jew.”

My father was a successful man and this fact seemed important to some people, but to most he was a down-to-earth person who would do anything for his family, friends and those in need.  He loved being part of a diverse Jewish community and wanted nothing more than to give back in a big way.  My siblings and I took our father’s values and brought them into the work of our foundation in our own strategic manner. Including people with disabilities is the fair and right thing to do, and this is what we focus on.

After my father passed away in October of 2012, we wanted to do something meaningful in his memory. We decided to remember him by honoring a person who has made an extraordinary contribution to the inclusion of people with disabilities in the Jewish world and beyond. Dr. Michael Stein is that person. With a humble manner, just as I saw in my dad, he makes a world of difference in the lives of people with disabilities.

On May 8, we honored Michael Stein with the Morton E. Ruderman Award in Inclusion. We met at Meditech– a software company in Canton, MA which my father was instrumental in founding. One hundred good friends, family members, and leaders in the Greater Boston Jewish community enjoyed the opportunity to celebrate both the work of Michael Stein and the legacy of my father.  My brother Jay spoke beautifully about our father’s humility and the great pleasure he received from helping others.  Bill Alford spoke of Michael Stein’s incredible work on behalf of people with disabilities and their families around the world. Michael’s personal stories provided a powerful and inspiring highlight of the evening.

My brother Todd summed it up: “My Dad was modest, believed in fairness, taught us the power of giving, and always advocated for those who could not. He devoted himself to helping others. When he was asked what he would like written on his gravestone, he replied: ‘I helped others get ahead.’ I see many similar character traits between my father and Michael Stein.”

I believe my dad would have been deeply proud of this Award, of Michael and his work, and of his children.

Sharon Shapiro is a Trustee of the Ruderman Family Foundation and the director of the foundation’s Boston office.

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