Most significant legislation in years.....

Dear Down Syndrome Indiana Families,

Over the past 5 ½ years, I have had the pleasure of speaking with many of you about your hopes and dreams for your children whether they are newborns or adults. I know you want your children to grow up to live independently, have a meaningful career or go to college. The most frequent questions I hear are, “How am I going to pay for this?” and “How will saving affect my child’s benefits?” This is precisely why the ABLE Act is so important! It will allow you to save for the future needs of your child, such as, a college education or housing or transportation needs without negatively impacting the benefits they receive.

It takes a huge amount of effort to pass a piece of legislation. I was on Capitol Hill advocating for this ABLE Act in February 2009 and we are still trying to get it passed! Many others have been working on it longer. …. The point is your voice is needed now more than ever. Please contact your legislator today and encourage them to support the ABLE Act, also known as, the Achieving a Better Life Experience Act of 2011 (S. 1872/H.R. 3423). It isn’t hard, it’s not scary and you really do make a difference.

So often, when there is such a big and overwhelming issue such as this, we think that so many people are already participating in contacting their legislators that our own call or e-mail won’t make a difference but that’s not true. There really aren’t a lot of people stepping up to the plate to make this happen. An analogy…. I attend a huge and I mean HUGE church. One Sunday they asked for volunteers in their disability ministry and I thought, surely in a church this big, there are people just lining up to help out in this area so if I wait to sign up, I won’t be missed. But you know what? I was wrong! Out of the thousands of members, they still didn’t have enough volunteers to pair up one on one with children in Sunday school that needed extra support. Seriously?! It doesn’t take that many volunteers! (Yes, I signed up as soon as I found that out). It is the same with the ABLE Act, we think everyone else is calling in or writing but I assure you they are not.

I was on a conference call regarding this piece of legislation earlier this month and a long-time advocate and leader in the Down syndrome community said, “This is the most significant piece of legislation I have seen in years”. That is powerful when you have witnessed the growth in the disability movement throughout recent history, such as, the signing of the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA) and deinstitutionalization. In a speech given by Tom O’Neill at a Down Syndrome Indiana Annual Meeting in 2007, he said, “While the disability and the Down syndrome movement has come a long way, we haven’t yet arrived. We haven’t arrived at that place where we can sit back, admire our accomplishments, and rest on our laurels. While much as been accomplished, there are many challenges yet to address and the opportunities, too, remain many. The power in the Down syndrome movement- and there is power as we stick together and use it wisely – comes from our united strength”. So true. Let’s demonstrate our united strength and be a voice that cannot be ignored. So, again, please ask your legislator to support the ABLE Act.

Dedicated to enhancing the lives of individuals with Down syndrome,


Lisa Wells, Executive Director




P.S. Below you will find additional information.


ABLE ACT Webinar
In December , the National Down Syndrome Society(NDSS) webinar will be “ABLE Act 101 – Everything You Need to Know About the ABLE Act” on December 7th at 1pm Eastern.
The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law
Presenters:
John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
Madeleine Will, Director, National Down Syndrome Society
Sara Weir, Senior Policy Advisory, National Down Syndrome Society
Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A.
Please register to attend this webinar. Seats are limited: https://www2.gotomeeting.com/register/608740234
You can read the full version of the bills here:

Senate - http://fifthfreedom.org/u/d0

House - http://fifthfreedom.org/u/d1

If this issue is important to you, you may wish to contact your representatives with your opinion. You can find contact information at http://fifthfreedom.org/findrep.php .

DSI Star Award Nominations

To nominate an individual that has made a long-standing contribution to the Down syndrome community, please send your nomination to lisa@dsindiana.org. Three winners will be chosen and announced at the DSI Holiday Party on December 1oth.

Why a Star?

Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.

Achievement: A star has long been a symbol of achievement. The star logo reminds us of the importance of all "achievements" of individuals with Down syndrome.

Inspiration: As a group of people familiar with the history of Down syndrome, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.

A Noble Life

The following is a speech given by Self Advocate and Down Syndrome Indiana board member, Jessica Green during a recent school presentation. She brought the teachers to tears and was encouraged to give her speech to more educators and students. If you are interested in having Jessica or a self advocate speak at your school, please contact the DSI office and we can help arrange it for you!

Good morning everyone!!

As you know, my name is Jessica Green.

I chose to title my speech today a noble life………..

I was born here in Indianapolis 28 years ago.

I am the first child of my parents, Steve and Lana Green.

I have a younger sister, Casey, and a younger brother, Michael, and my dog named Sofie.

When I was born, my parents were not only new to being parents but certainly new to know how to support a child who had Down syndrome.

Little did they know that raising me and loving me would be a piece of cake!

They took me home and followed the advise of my pediatrician which was….to treat me like they would any new baby and enjoy every moment.

My parents brought me home and then got busy researching and learning as much as they could about Down syndrome and what would be best for me.

They met some wonderful people at Noble of Indiana who gave them encouragement and strength.

They started realizing what a happy and full life I could have.

Boy were they right!

I am glad they didn’t listen to the professionals that were telling them not to set their expectations too high….

They learned terms like inclusion and normalization.

Inclusion means that every person, regardless of their challenges should be offered the same opportunities as their peers.

My parents thought being in the real world would be the best way for me to learn and make new friends.

So from preschool on, I was in typical classrooms with other children my age.

I attended my neighborhood school with my brother and sister and neighborhood friends.

This was a very new idea back in the 1980’s so it took quite a few meetings and discussions before it happened.

It also took some work by my mom and some very good teachers to adapt and modify some things so that my classes would be meaningful to me.

This not only helped me but quite a few other children in the classroom.

There were times when it was pretty hard but as my grandma smith says…”you can’t give up……if you fall or stumble you just have to keep getting back up and try again….

All of the experiences that I have had—good and bad—have made me the person that I am today.

We all deserve the dignity of being allowed to try!!
Sometimes I succeed and sometimes I don’t—just like anyone else.

I had a very busy time during my school years, not only taking classes, but attending extracurricular activities like dancing and performing with the theatre of inclusion, volunteering for the Humane Society, and eventually working for Barnes & Noble, Eddie Bauer, and two different advertising agencies.

After I graduated, I was able to fulfill one of my dreams……..to go to college….
I attended Marian University here in Indianapolis, and it was great!!

I hung out on campus and went to dances and sporting events and oh!! yes!! I took classes too… ha ha ha…

I took dance, choir, stage production, volleyball and nutrition.

After college I started working for a company…..Advantage Medical in Carmel, Indiana. I was there for 8 years. They were recently bought by a larger company and my position was outsourced, so I had to look for a new job. I am now working at Petco in Carmel as a grooming assistant. I love dogs and really wanted to work with them, so I am very happy.

One of the things that I am most proud of is being a self advocate. I am on the board of Down Syndrome Indiana and also in the National Down Syndrome Congress. I am so proud of representing people who have Down syndrome. I love meeting families of younger children and giving them hope and encouragement for their child’s future. I encourage them to think out of the box and push the envelope.
You really don’t know what a person can do until you give them a chance to try!!

I have testified and spoken on behalf of the issues that individuals who have challenges face. I have done this here in Indianapolis and also in Washington D.C.

It is important that the people who are in charge of making the laws know firsthand what is important to us and that we feel we deserve the same rights and privileges as everyone else.

After all…..

I pay taxes, I pay rent, I vote and believe I deserve a voice like anyone else.

I even wrote the governor a few years ago to ask if crosswalk signs could be put up at the intersection where I live. I wanted to be able to safely walk across the street to my neighborhood stores and bank. I couldn’t believe that he read my letter and they were actually installed. I am proud of this because I know it not only helped me be more independent, but I know it helped other people as well.

In August 2010, I achieved another lifelong goal!! I moved into my first apartment!!

I am still learning what it means to be our on my own and making my own decisions. I am learning about making healthy and safe choices, about budget, cooking and everything that comes with living independently. I think this has been harder for my mom and dad than me.

I am really enjoying the freedom and the experience so far.

Well, I will close by reminding all of you that at the end of every rainbow there is a pot of gold. That is the message I would like to leave you with today.

Never give up!!

Teachers and administrators please allow all of your students to fulfill their dreams. Offer them a supportive and positive environment so that they will have an opportunity to reach their full potential.

Somewhere over the rainbow dreams can come true and everyone should be allowed to try to reach their pot of gold.

Thank you so much for having me here today. Go out and make it a wonderful day!!