Category Archives: In the Media

It’s Jenny’s Decision

JayRudermansimonsBy: Jay Ruderman and Jo Ann Simons

Note: This post was written just prior to Jenny’s victory in court last Friday.

Margaret Jean Hatch (Jenny) should be able to make her own decisions instead of being placed under guardianship and having her basic rights trampled.

Jenny is a twenty nine year old Virginian with Down Syndrome. Her story was chronicled here and this case has pitted her parents against her. The parents have asked the courts to intervene, declare Jenny incompetent and have requested full guardianship. They want to decide where Jenny lives and who she has as friends. In this case, it means they want Jenny to live in a group home with other persons with disabilities (and an agency chooses who her housemates are) and they want to decide who she sees. They want to strip her of her freedom to make choices and the ability to make her own decisions. Jenny is adamant about moving in with friends instead of living in a group home. This battle is being fought by lawyers in a Virginia courtroom instead of being led by Jenny in the home of her choosing.

The idea that individuals with intellectual disabilities should and can make their own decisions is not new. It is called self-determination. We have moved from the formally held belief that families and professionals should make decisions on behalf of persons with disabilities to the new paradigm that people with disabilities can and should make their own decisions. We believe that everyone can make their own decisions, including people with significant disabilities. Like the rest of us, they might require assistance from family, friends or professionals when confronted with a complicated decision. Everyday remedies are already in place to deal with complex issues and difficult decisions. There’s overwhelming research that people with disabilities, especially those with Down syndrome, can live on their own or with minimal assistance and make their own decisions.

The laws of guardianship vary from to state. Many states allow for limited guardianship and even temporary guardianship. These features ensure that the specific needs of an individual are addressed, rather than taking all decision making capabilities away as in a full guardianship. For example, the Social Security Administration often requires a representative to receive, dispense and report on Social Security payments, often the primary financial resource of a person with a disability. In most hospitals, a health care proxy is required upon admission so that a trusted person is available to make decisions instantly.

We oppose guardianship in all but the most extraordinary of situations, and clearly Jenny does not in any way meet the level where full guardianship is required. There are other, less intrusive ways of providing support and assistance to individuals with disabilities.

In Massachusetts, a person with a significant disability does not have to be deemed “incompetent” in a guardianship proceeding to have access to assistance. An individual, like any of us, can designate a Power of Attorney and a Health Care Proxy. Massachusetts regulations allow for a person to be authorized to be an advocate. None of these require the involvement of the court and have no cost to establish.

We trust people to help us make choices all the time- why shouldn’t Jenny be given the same latitude?

Jenny- after her court trial ended in victory. Courtesy: The Washington Post

Jenny- after her court case ended in victory.
Courtesy: The Washington Post

Jenny has a steady job, rides her bike around town, is described in court documents as having “good survival skills.” Her father lives out of state and her mother does not want Jenny to live with her. A group home may seem safer and provide them peace of mind but that’s not what Jenny wants. She wants to live in a smaller setting, with two individuals who want to share their home and friendship. They are also able to provide Jenny with the oversight and assistance she needs. It is not that group homes are bad places to live. We have learned that smaller settings are better, as they permit a natural inclusion into community life. We believe that a person with a disability ought to control all the aspects of their life- who they live with, when they eat and bathe, what leisure activities to enjoy and what time to retire at night. These small but significant decisions are usually not honored in a group home where the needs of the group outweigh the individual needs of one person.

There’s a fundamental shift underway in our country and it has already impacted the way states are providing residential services. The number of baby boomers, the growing population of people with disabilities (20% of the population, according to the US government), a shortage of care givers and Medicaid reform has shifted funding away from group homes towards supporting family care.

Despite all the advancements people with disabilities have made and the protections afforded them under the ADA, the way that guardianship is allowed to flourish in our country demands our attention. There are still too many professionals and some families who believe that every person with an intellectual disability should have a guardian, in spite of evidence that demonstrates that it is not necessary. People have a right to make bad decisions- people smoke, eat foods that are harmful, bike without a helmet and yet we do not appoint a guardian for them. People with disabilities are entitled to make their own decisions even when others think those decisions may be wrong.

We can’t judge whether Jenny or her parents are right about the best residential environment for her but we do know that Jenny should have the right to decide. The appointment of a guardian is not the proper way to make a determination in this case. The decision is Jenny’s and Jenny’s alone and if she makes the wrong decision, she will not have been the first to make a bad choice about roommates.

And she won’t be the last.

Jay Ruderman is the President of the Ruderman Family Foundation. Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

Jenny won her case last week in court. Learn more about Justice for Jenny

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Filed under Disabilities rights, Down syndrome, Employment of People with Disabilities, In the Media, perceptions of disability

Hoops Star Scores For ‘Disabled’

JayRudermanFriends-

I wanted to share with you an op-ed I wrote in last Sunday’s Boston Herald.

Do you think full inclusion in school sports will happen in the near future?

– Jay

Last month, a story showed up in newspapers and on television screens across America about a remarkable high school senior with severe disabilities playing varsity high school basketball.

At the same time the story was circulating, the Department of Education issued an historic human rights edict mandating full inclusion in school sports in our nation.

The timing of these events is fortuitous.

Roman Sweeney is testament to how vital it is for a just and civilized society not to judge, stereotype, or rush to establish limits on what people with disabilities can achieve.

Really, here was Sweeney — born with legs that end just above the knee, and who has no left elbow, forearm, or hand – running the court in a varsity hoops game for North Central Charter Essential School, a secondary school in Fitchburg.

Yes, I said running. Sweeney has titanium leg prosthetics that extend into his high-cut Nike sneakers. Without knees, Sweeney has become proficient in a stiff legged fast gate, and whether on offense or defense — moving forward or backward or sideways — he is able to quickly bounce and pivot and change direction.

Sweeney, adopted from Russia when he was 6, dribbles, catches the ball, passes and shoots off the dribble, and can gather a pass, cradle, and shoot the ball in one coordinated motion. He scores, including hitting three three-pointers this season.

America getting to know Roman Sweeney — it couldn’t have come at a better time.

On Jan. 25, the Department of Education, acting on the recommendation of the Government Accountability Office, sent to schools across the nation a guidelines letter making clear their responsibilities regarding sports under Section 504 of the Rehabilitation Act of 1973.

Section 504 requires that schools receiving federal funding ensure that people with disabilities have the same access to sports and other activities as do those without disabilities.

In a statement that accompanied release of the guidelines, Education Secretary Arne Duncan, a former standout basketball player at Harvard, said, “Students with disabilities are no different — like their peers without disabilities, these students benefit from participating in sports. But unfortunately, we know that students with disabilities are all too often denied the chance to participate and, with it, the respect that comes with inclusion.”

Of course, the DOE guidelines naturally inspire questions and clarifications.

Schools are required to make “reasonable modifications or aids or services” to help a person with disabilities participate fully in a sport, but they are not directed to change the rules of a sport — and are not required to make modifications or provide aids or services that “constitute a fundamental alteration of the extracurricular athletic activity.”

But in many cases, changes and assistance can be provided that will allow people with a disability to participate in a sport that was previously off-limits to them.

For example, a person with a hearing disability who wants to run track could be provided a visual signal that the race has started.

Far off in the distance is the goal of full inclusion — a world where those with disabilities have the same access to employment, educational and social opportunities as those without disabilities. Yet the DOE actions amount to a long and powerful step in the right direction.

We are all fortunate that those DOE actions, and that long and powerful step, are supported with the stirring and uplifting images and narrative of Roman Sweeney, the young man with disabilities who day in and day out does what can’t be done — and who day in and day out disproves notions of what can be accomplished.

Read our last post: United We Play

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But Words CAN Hurt Me!

jo ann cropRead our last post: An Inclusive Shabbat Experience

by: Jo Ann Simons

The Associated Press just released new guidance to reporters on how to write about mental illness and other conditions, including autism.  The much used Associated Press Stylebook tries to stay current but apparently has not kept up with their own news. For example, autism is not a mental illness and “people first” language is actually the law in much of the land.

While one of my favorite posters of all time read “Label Jars. Not People”, we still are trying to stick people, especially those with disabilities, with meaningless labels.

I understand why labeling a person in the rarest of occasions might be important and relevant. For example, when an Amber Alert is issued in the United States for a kidnapped child, it is essential that specific identifying characteristics be shared. It would be essential to know if the child was black, had an unsteady walk or had Down syndrome. This information would help identify the child and ensure a happy ending.

However, most of the time, they are irrelevant and only serve to prevent the full inclusion of people in our society. They also help perpetuate stereotypes.

For example, the only reason to identify the race or ethnicity of someone accused of welfare fraud, is to create bias.  We all know that fraud is committed across all race and socio-economic lines.

words can hurt

This kind of prejudicial thinking is one of the major reasons people with disabilities are still relegated to the margins of society. Since people with disabilities are the poorest group of people in the world and the recipients of much public assistance, they are at the greatest risk to the negative effects of labels associated with disability and poverty.

This hit close to home for me last month in St. Louis. I am often asked to speak to audiences on the transition from school to adult life for students with disabilities. As part of the discussion on economics and funding streams, I explain the importance and value of the Section 8 program, a housing subsidy program for the poor in the United States (my son uses a Section 8 Housing voucher). It can be argued that it is among the most important benefits for a person with a disability for it ensures safe, flexible and quality housing.

Stereotypes and Reality

This almost always comes as a surprise to my audiences since they often associate this housing program with the negative stereotypes that the press has perpetuated- that largely minority households take advantage of this program and that slum landlords manage undesirable housing.  I spend much time dispelling these myths and my usually white audiences have to be convinced.

I was unprepared and grateful for the small group of black families who came up to me after my presentation to thank me for my comments about the Section 8 program.  They told me that they often feel that others “put their noses” around this subject and that I had done much to “get it right”.

It brought me back to an earlier time when teachers and others always began a description of my son by saying he had Down syndrome. It told you nothing about how he learned, his strengths or the areas where improvement was needed. It only told you how he looked. It was early in my journey so I didn’t question it until I received his progress report from his first grade teacher at Temple Emanuel (Marblehead, MA). She said, ”Jonathan has made much progress since last year. He knows the three meanings of Shalom and he can recite the Shema (morning prayer). He loves music class with Mr. Sokolov. He is a joy to have in class.”

So while the Associated Press gives reporters new guidance on labels for people with disabilities, I can continue to hope for a day when they are not required.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

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New Video: The Winning Shot

Read our last post: Where are the Curb Cuts in the Jewish  Community?

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Last week, a high school basketball team in Texas ensured that everyone on the team had an opportunity to play. They let Mitchell Marcus, their team manager, suit up for the last game of the season. Not only that, the coach put Mitchell into the game for the final 90 seconds. Not newsworthy, except for the fact that Mitchell has a developmental disability.

His teammates tried to involve Mitchell in the game by passing him the ball and encouraging him to shoot. But it’s what Jonathan Montanez, a member of the opposing team, did at the end that has everyone sharing this story. “I was raised to treat others the way you wanna be treated. I just thought Mitchell deserved his chance.”

We still live in a society where these examples of inclusion pull at our heartstrings. Those of us promoting inclusion certainly want to take advantage of the good feelings it engenders. One day, we hope not to have highlight these; it will be the norm.

Take a look…

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Announcing the 2013 Ruderman Prize in Disability

Friends,

In this special edition of Zeh Lezeh today I want to share the worldwide announcement of the 2013 Ruderman Prize in Disability.  The following press release was sent all over the globe, and we are already seeing interest from Jewish communities in Rwanda, Fiji, and the Netherlands—among many others.

We excited about the buzz the Prize is generating, and look forward to receiving applications from excellent and innovative programs that will inspire our community to an ever greater dedication to inclusion.

–Jay Ruderman

RUDERMAN FAMILY FOUNDATION ANNOUNCES $250,000 GLOBAL COMPETITION FOR INNOVATION IN INCLUSION OF PEOPLE WITH DISABILITIES
Second Annual Ruderman Prize Will Celebrate International Work on Inclusion

Newton, MA (February 10, 2013) Ruderman Family Foundation President Jay Ruderman today announced the launch of the 2013 Ruderman Prize in Disability, its second year, which will provide $250,000 in funding to recognize  innovative programs and services that foster full inclusion of people with disabilities in the Jewish community worldwide.  The $50,000 awards will be given to five organizations that work in the disability arena, serve those in the Jewish community, and actively champion inclusion in their work.

“This year’s Ruderman Prize in Disability will again celebrate exemplars in inclusion, which by example accelerate innovations for people with disabilities and energize the global Jewish community to work toward those ideals,” said Jay Ruderman, President of the Ruderman Family Foundation.  “We believe this competition will generate new attention to the issue and spur new ambitions, as we work toward our goal of the full inclusion of people with disabilities in the Jewish community, so that these individuals have the same employment, social, and religious opportunities as those without disabilities.”

In June, the Foundation awarded $200,000 total to ten organizations.  The Foundation received over 150 applications representing seven countries.  The Ruderman Prize recognizes organizations for exemplary existing initiatives rather than making grants for new programs.

The application form for the awards is available on the Foundation’s website.  Submissions are due on March 18 and winners will be announced in May.

The Ruderman Family Foundation is dedicated to creating and promoting innovation that fosters inclusion of people with disabilities in the Jewish community and Israel.

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ReelAbilities Disabilities Film Festival

Friends,

Again this year we are pleased to join with several other foundations in supporting the ReelAbilities Disabilities Film Festival.  This collection of carefully curated films provides surprising and enjoyable glimpses into the lives of people around the world who happen to have disabilities.  The full schedule of screenings and venues can be found here; those of you in Boston are warmly invited to join us for any and all of them.

–Jay Ruderman

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Common Ignorance and Uncommon Decency

Friends,

Another disability-related media story has gone viral.

Everyone seems to love inspiring stories about uncommon decency, whether they happened thirty years ago or this month.  I hope you enjoy this one.

–Jay Ruderman

Common Ignorance and Uncommon Decency

By Jo Ann Simons, Disability Advisor to the Ruderman Family Foundation and President and CEO, the Cardinal Cushing Centers

The recent story of the Houston waiter who stood up for his beliefs– and for his young guest– has been featured on local television, national networks, the internet, and Facebook. It seems to have struck a chord for thousands of people.

The story is that the waiter, Michael Garcia, seated two groups of regular steakhouse customers across from each other. Suddenly one group moved to a different part of the restaurant; he didn’t think anything of it. The group that remained was a local family, the Castillos. Their family includes a beautiful five-year-old boy, Milo, who happens to have Down syndrome.

Michael’s values become evident when he heard a member of the first group say, “Special needs children need to be special somewhere else.”  He told the man, “I am sorry, I can’t serve you.”

This wasn’t a reality TV program where a secret camera is filming people being rude, ignorant or stupid so we can test onlookers’ reactions. This was real life.  This was a family out for dinner in a public restaurant being subjected to the kind of humiliation and rejection that I thought was long over.

It brought me back to another time, over 30 years ago, when my handsome son with Down syndrome was playing at the beach: a happy three-year-old digging holes and making sandcastles alongside another local three-year-old. After about ten minutes of side-by-side play, the grandmother of the other young boy came by– a woman whose name I knew– and I was stunned by her shocked and disgusted expression. But I knew that where I saw love, happiness and joy, she saw something else. She grabbed her grandson quickly by the hand and without a word led him far away from Jonathan. She found another playmate for him on another part of the beach.

Well, I didn’t have a Michael Garcia– but I had my mother, Elaine Simons. I told her the story that night and the names of the boy and his grandmother. A month later my mother told me she saw the grandmother when she was with Jonathan at the country club where both women were members.

My mom marched up to this woman and with pride and affection said, “I don’t think you have met MY grandson, Jonathan. Jonathan, this is Mrs. Roberts.”  She walked away, and with that taught me never to accept less than complete respect for my child.

Milo Castillo and Jonathan Derr.  Michael Garcia and Elaine Simons. Thanks to you– and so many others like you– we are finally learning that people with disabilities belong on the beach, in the steakhouse, and everywhere in between.

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Filed under Down syndrome, In the Media, perceptions of disability

What ARE they thinking?

Friends,

One of the great benefits – and occupational hazards– of championing a cause such as the inclusion of people with disabilities is that eventually one can end up in a bubble, surrounded by wonderful but like-minded people devoted to the same cause.  That may partly explain why I was so shocked earlier this month to see the survey results reported in the Times of Israel article below.

To those of you familiar with Israel, I ask: do these statistics sound accurate to you?  Is this really what most Israelis think?  If so, why?  Is this so different from the way the rest of the world thinks– or are these Israelis just being more honest?

Most importantly, what can we do about it?

How can we usher in a new era of tolerance, understanding, and compassion in relation to our neighbors with not only intellectual disabilities, but all kinds of disabilities?  These are questions I ponder every day, and I invite you to help me better understand the attitudes and assumptions that stand in our way.

–Jay Ruderman

 

Half of Israelis don’t want anything to do with mentally disabled

Asher Zeiger, Times of Israel, January 3, 2013

A narrow majority of Israelis — 52 percent — would prefer not to meet people who are mentally disabled, according to a survey released by a leading Israeli organization that advocates for the intellectually challenged.

In addition, 40% of those interviewed said that they would not want to be the neighbors of a mentally disabled person, and some 25% said they would not want to work in the same room as such a person, or even receive service in a coffee house from one.

The survey, which was published on Wednesday by AKIM, the National Association for the Habilitation of Children and Adults with Intellectual Disabilities, was based on a sample of 605 people and was conducted in conjunction with the B.I. and Lucille Cohen Institute for Public Opinion Research of Tel Aviv University.

Some 25% of the people interviewed believe that mentally disabled people could be dangerous, and 31% said they should be kept separate from the general population.

Beyond complete separation, many of the people interviewed believe that some of the rights enjoyed by most Israelis should not be granted to the mentally disabled. Thirty-seven percent of respondents said they should not be allowed to vote, 15% believe they should not be allowed to marry, and 28% said they should be prevented from having sexual relations.

Israeli law not only allows the intellectually disabled adults to vote, but also permits them to have a companion with them in the booth when they cast their ballot.

Sigal Peretz Yahalomi, the director-general of AKIM, explained that, in Israel, the classification of a person as mentally disabled is done by a Welfare Ministry expert committee. The definition includes those with an IQ of less than 70, she said.

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A True Pioneer

Friends,

My colleagues in Boston are telling me about the passing of Rex Trailer, a popular children’s television show host half a century ago. He is being remembered as not only a great entertainer but also an exemplary human being. Rex Trailer earned the respect and devotion of fans, coworkers, and – long before modern ideas of inclusion – disability advocates.  Jo Ann Simons reminisces below about a man whose attitudes were light-years ahead of his time.

Do you remember Rex Trailer’s show, and his pioneering 1961 wagon train?

–Jay Ruderman

A True Pioneer

By Jo Ann Simons, Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

I remember his smile and his voice and I can still shout loudly along with the refrain of the theme song to Boomtown.

“Boom- Boom- Boomtown!”

Boomtown was a weekend children’s show on WBZ-TV in Boston that ran from 1956 through 1974. The host was Rex Trailer, a singing cowboy, who died this week at age 84. Rex rode his horse Goldrush onto the western-themed Boomtown studio set for several hours on Saturday and Sunday mornings and into our family’s only television.

My brother and I watched regularly with excitement. Rex showed us, his “posse”, special cowboy tricks and taught us cowboy ways. We were treated to songs and beloved cartoons. I cherished my weekend mornings with Rex Trailer.

Apparently over 200,000 children appeared on Boomtown over the years, and millions more watched from home. Imagine my surprise when I learned decades later that his studio audience had included children with disabilities. While schools were routinely excluding them from an education, they were welcomed as full participating members of his “posse”. I do not recall any of those children on TV as having disabilities– and I guess that was the point. Could his subtle example of inclusion have helped shape my capacity for acceptance when my son Jonathan was born with Down Syndrome in 1979?

In 1961, Rex used his popularity to further propel the movement for respect and dignity. With the organization now known as The Arc of Massachusetts, he led 18 covered wagons across the state from Greenfield to the State House steps to raise awareness of the needs of children with intellectual disabilities. Each evening the wagon train would host a campout and community event for his “posse” and their families. Highlights of the trip would run daily on WBZ-TV and radio so the general public could keep up with the wagon train– and his with educational message to the public about disabilities.

Not as well-known was his decision, following President John F. Kennedy’s assassination in 1963, to ban weapons from his television show and studio.

By any definition Rex Trailer led an honorable and inspiring life. His life and work was a gift to the people and times in which he lived.

We have never needed a reminder of what one person’s compassion and visionary leadership can accomplish more than we do today.

Rest in Peace, Rex—and treat Goldrush to some carrots from all of us.

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She’s got my vote

Friends,

We have just heard about Alexis Wineman, an extraordinary young woman competing this weekend in the Miss America pageant.  Check out her interview with Fox news.

Alexis was diagnosed with autism at age 11, and this year at age 18 is representing Montana as the youngest pageant contestant ever.

Her slogan?  “Normal is just a dryer setting.”  I want it on a bumpersticker.

Could this be any more a sign mainstream of inclusion in the U.S.?

Good luck, Alexis– and thanks.

–Jay Ruderman

P.S.  If you want to vote for her in the online popularity contest, you can login here until midnight pacific time today—Thursday, January 10th.

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Filed under In the Media, perceptions of disability