Category Archives: Down syndrome

Friends Forever

jo ann cropBy: Jo  Ann Simons

I am at Starbucks nursing a decaf and borrowing their wifi. I am not alone. Even on a Friday night on the biggest and busiest shopping day in the United States, the day after Thanksgiving, there are a few others here as well.

I didn’t come to work. I came to wait.

I just drove my son, Jon, to his 15th high school reunion and dropped him off alone at a bar. He has been looking forward to this night, maybe for the five years since his 10th reunion.  He remembers high school with happiness- being included in all academic classes, playing on the golf team, managing the basketball and lacrosse teams, coaching powderpuff, going to proms and being in the senior show.

Graduating with his class, being awarded class scholarships and with college acceptances in hand-  these were not small feats in the 1990’s.

But it’s tonight’s reunion that is on my mind. Will anyone be there that Jon knows? Will he even find the room where the reunion is being held? Will he demonstrate good decision making- I saw the list of beers he was thinking of tasting and with $50 and a credit card, it was all up to him.

Jon and friends
On the car ride to the bar, we discussed how there might not be too many of his classmates there- they are in their mid-30’s now and many are married with children, with careers and mortgages. They may not be as nostalgic as Jon is about high school.  From my snooping on Jon’s Facebook page I could see that there were not many who RSVP’d. I prepared him but, Jon’s optimism was evident, “You never know”.

As he headed out of the car, I asked if he wanted me to bring him into the bar to find the group and he looked back with a glance and  said “I will text you.”

How long must I wait to have the assurance that he was safe and with friends? As it turned out, not very long at all because as soon as I sat down, decaf in hand, the text arrived. It simply said, “Adam Farber”.

With my eyes moist, I was transported back eighteen years. Jon was a sophomore in high school, attending the local school for the very first time and Adam was in our small car pool. It was the year that Adam wore a kippah to school.  Even in our suburban high school with a large Jewish population, Adam stood out. He was the only kid with a kippah. As I watched Adam walk into school one  morning, I realized just how special he was- he walked into the high school wearing a kippah and walking side by side, with his classmate, with Down syndrome. I saw him as a teen with courage and conviction and I wanted to hug him. I settled for telling his family how moved I was. I was also deeply appreciative.

Somehow, I am not surprised that it was Adam who first found Jon tonight.

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

Read our last post: Roadblock To Inclusion
Come visit us on Facebook to learn more about inclusion of people with disabilities

Advertisements

3 Comments

Filed under Down syndrome, perceptions of disability

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

Read our last post: Sibling Journey

Come visit us on Facebook to learn more about inclusion of people with disabilities

2 Comments

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

The Way He Is

simonsby: Jo Ann Simons

The news that scientists at the University of Massachusetts Medical School in Worcester have discovered a way to turn off the chromosome that causes Down syndrome is creating quite a buzz in the news and in clinics, hospitals and homes worldwide.

People are born with 23 pairs of chromosomes, including two sex chromosomes, making a total of 46 in each cell. Individuals with Down syndrome (or Trisomy 21 as it is also called) are born with 3 copies of the 21st chromosome. The expression of this extra genetic material causes an array of medical and developmental challenges. People with Down syndrome have intellectual and learning challenges, early onset of Alzheimer’s disease and they are at a greater risk for congenital heart defects and leukemia. They are also short in stature.

The possibilities are exciting. In the future, the ability of scientists to turn off the expression of the extra genetic gift that causes Down syndrome could alter the medical and cognitive problems associated with it.

This news hit my home directly and personally. Over 20 years ago, I learned that the human growth  hormone used to treat children’s growth disorders could have applicability to increasing the height and perhaps the head size of my son, Jon, who has Down syndrome.  Since the treatment was not covered by insurance, except in certain circumstances, it came with a very high price tag.

It also came at the same time that we received a small settlement as a result of abuse that Jon had suffered by the individual driving him to school. We had an opportunity and we now had the way to fund it.  Before making a decision, we consulted with physicians and medical ethicists.  They asked us to consider the needs of our entire family versus the gains that would be achieved by one member of the family.

Jo Ann and her son Jon

Jo Ann and her son Jon

Conflicted, I decided to put the question to Jon, at that time a twelve year old. He knew he was shorter than his peers, so I presented it to him like this: There is some medicine that can make you taller. Would you like to be taller? Jon did not hesitate to answer, “I like the way I am.” Decision made. No human growth hormone.

This week, the same announcement about the UMass researchers also contained the news that researchers at Massachusetts General Hospital will soon be enrolling adults with Down syndrome in a clinical trial of two drugs that hold promise to increase the cognitive functioning in adults.

This time I didn’t need to consult with physicians or ethicists. I immediately discussed the possibility of seeing if Jon could be part of the upcoming clinical trials with my husband.  Just a few IQ points could make Jon’s life easier- from being able to read complicated transportation schedules or understanding the interactions of over-the-counter medications could increase the quality of his already independent life.

My husband said he would support it if there was a guarantee that it would not affect his sweetness, humor or affection.

Because we love him the way he is.

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

Read our last post: We’re Not Different by Nick Savarese of Special Olympics, Massachusetts

Come visit us on Facebook to learn more about inclusion of people with disabilities

17 Comments

Filed under Disabilities rights, Down syndrome, perceptions of disability

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.

3 Comments

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

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.

1 Comment

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

Feeling Connected: Jon’s Lesson for Us All

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

I should know by now that when you least expect it, profound wisdom is revealed.

I was picking up my son, Jon, at the bus station. As many of you know, Jon is my adult son with Down syndrome. He enjoys, what we like to say is a fully inclusive life. He has his own home, works, volunteers, travels, has friends, belongs to a synagogue and makes his own decisions about what to eat, how much TV to watch, when to go to bed, etc.

As we drove by the airport on the way home, Jon began talking about an upcoming trip that several of his friends were taking to Washington, DC.  He decided that he did not want to go on this trip, in spite of his joy of travel.  He said he wasn’t interested in the itinerary and “they were not even going to the Holocaust Museum,” a place he had visited many years earlier with his 8th grade synagogue class. He went on to talk about our family trip to Israel, where he said, “I visited the real Holocaust Museum,” referring to Yad Vashem, I reminded him of the time we all bore witness at Dachau.

And that’s when Jonathan summed it all up. He said, “Going to all those places, it makes me feel connected.”

I began to wonder. Is it inclusion we seek or is it being connected? Jon’s feeling of being included is about being recognized as a Jew and being part of our history. Of all the gifts our community has given him, being connected is what has meaning for him.

And while we prayed together this past Rosh Hashanah, on Yom Kippur, Jon was 90 miles away, praying at his synagogue, in his congregation, feeling connected.

— Jo Ann Simons

2 Comments

Filed under Disabilities rights, Disabilities Trends, Down syndrome, Uncategorized

We Have Come so Far …. Ann Coulter Notwithstanding

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO, Cardinal Cushing Centers

Whenever I see an old Seinfeld episode where Jerry is using one of the first portable phones, it reminds me of how many changes I have seen in my adult life. Those bulky phones now seem primitive. In reality, it wasn’t too long ago when they looked pretty impressive. Now we are walking around with phones the size of a deck of cards that also double as computers.

These thoughts also remind me of the positive changes I have seen in the disability world. We can argue the decision to hire an able-bodied actor to portray the Glee character who uses a wheelchair.  But we have to celebrate the producers’ use of Lauren Potter, an actor with Down syndrome, to portray Becky, one of the hit show’s cheerleaders.  And it was the decision to hire a 50- year-old actor with Down syndrome to portray Sue Sylvester’s older sister that I celebrated most.  Her character died in the second season, but the storyline was realistic. The life expectancy of persons with Down is now close to 60 years old but only a few decades ago it was 20.

Having depicted both a teen and an older adult with disabilities, Glee is bringing another generation of actors into the storyline. Last season ended with Sue revealing her pregnancy, and this season we have learned that baby Robin—named for the actress who played Sue’s sister—also has Down syndrome.  While we all wait to see exactly how this will be played out, I took a moment to celebrate how disability is finally being seen as just a part of humanity.

My moment of celebration was cut short when I read about commentator Ann Coulter’s recent description of President Obama as a “retard.” Despite an outcry from people with disabilities and others, she said she was not sorry for her use of the “R” word.

Coulter defended this with an irrational logic: she claimed the word is synonymous with the word “loser.”  But that is the whole point…  The high school kid who yelled “here comes the retard” as I drove my son to school was calling him a “loser.”  That is exactly how that kid wanted my son to feel.

So I can’t fully enjoy the progress we have made with Glee, because there are still those like Ann Coulter who just don’t get that the world has changed.

— Jo Ann Simons

Leave a comment

Filed under Disabilities rights, Disabilities Trends, Down syndrome, General News, In the Media, Uncategorized