Monday, March 5, 2012

We walked...

We walked on Washington.  We conquered Capitol Hill.  We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.

It is no surprise, I am sure, that people with intellectual disabilities are not treated the same in society.  We fight to break down stereotypes everyday...but the inequality doesn't stop at stereotypes, unfortunately.  I have no doubt that Kayla is going to change the minds of many and this trip to Washington helped to confirm that.  People love her.  She is charming, magnetic and kind.  While she is only five...and stands at just 41 inches tall, she lights up any room she enters.  With her shimmery blue eyes and her sparkling smile, she exudes confidence and I beam with pride.  So while we had a message to spread to our Congressman and Senators, without her, our message...our voice would not have had an adorable face to go with it.

What was our message?  Sign the ABLE Act.  Today Kayla cannot own more than $2,000.  She cannot be worth more than $2,000.  Truth.  Sad but true.  Why?  She receives medical benefits from the government.  Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits.  Kayla can't get money for birthday presents.  We can't save for her college or her future.  We cannot leave her our house or a car.  Her grandparents cannot leave her anything in their wills.  She can't be worth more than $2,000.  Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1.  It doesn't transfer from state to state should you move.
2.  It is super complicated.
3.  It costs several thousand dollars to set be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.

And why not allow her the same right as everyone else?  Why should we not be able to save for her future?  She is a person, with a voice...and should have the same rights.  This is why we walked.  She is the reason we fight for equality.  We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome.  We fight for them.  All of them.

If Kayla were of working age today...why work?  Why attempt to be a contributing member of society if she would be penalized for it?  Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits.  The system is broken and must be fixed.

So what is the ABLE Act?  If passed, it will be a vehicle of savings that is similar to a 529 education account.  It will allow people with disabilities to save for their future without losing their medical benefits.  The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society.  That's my soapbox.  I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.

This was just one ask we had of our senators and congressmen...we had a few others...but we went from office to office spreading our message, conveying our asks.  Rick was amazing.  He knows policy and government affairs like no other.  Every day he amazes me with how much he cares about Kayla and how much he wants to make a difference in the lives of all of her friends with disabilities.  He was a beast in each office...kind and compassionate but demanding.  A perfect balance.  Because I know if it were me talking I would either cry or get heated.  You know, that momma bear instinct...protect the cub.

First stop was Senator Carper's office.
He was very kind and actually gave Kayla his autograph.  She was very excited.
Once inside his office she went into serious business mode...listening, taking note...
Next stop was Senator Coons...
He was so kind and caring.  He got down on her level and made conversation with Kayla...even getting her to show off her muscles.  You better watch out, Senator, we wouldn't want to make her have to flex those muscles to make you sign the ABLE's better just to do what she me...

Next we visited with Congressman Carney...
He already supports the Down syndrome community.  He signed onto the Down syndrome caucus this past year.  We are so grateful for his support and hope he will sign the ABLE Act.
Throughout the two days we were also able to meet and greet with tons of other amazing people.
Like Brad Hennefer...

We have met him several times and he never ceases to amaze me.  He goes by B-rad because he is a superstar...and that's the nickname his teammates gave him...and it just stuck.  He played varsity basketball and is an amazing golfer with even more amazingly supportive parents.  Together they have started a non-profit foundation, teaching people with Down syndrome how to's called Golf for Life.

Bridget Brown...

Seriously...can she be any cuter?  We have met Bridget a few other times, as well.  In fact, Kayla and Bridget were both contestants in the Miss You Can Do It Pageant this summer.  She is an amazing speaker and advocate for people with Down syndrome.  You can check Bridget out here.

Sara Wolff

I have had the pleasure of hearing Sara speak on a few occasions.  She is amazingly motivational...and beautiful inside and find out more about Sara, check her out here.

Dr. Brian Skotko
I don't even know where to begin...I am in awe of this man.  Dr. Skotko is an amazing doctor but even more amazing brother.  His sister, Kristin, just happens to have Down syndrome.  Dr. Skotko is a board certified geneticist at the Children's Hospital Boston.  He has written books, conducted important studies and quite simply made a huge impact in the lives of people with Down syndrome...and their families.  He couldn't be more amazing...

Representative Cathy McMorris Rodgers
Representative McMorris-Rodgers has a son, Cole, that just happens to have Down syndrome.  I truly believe that some people have been placed in positions of power to help others.  She is one of those people.  Her political strength will no doubt help many people with Down syndrome in years to come.  I am so grateful for her.

Michelle Witten and Abbey Perlmutter
Both of the Global Down Syndrome Foundation of Denver, Colorado.  Michelle has a daughter that has Down syndrome and together with her family started the foundation.  They are amazing people doing the most wonderful things for people with Down syndrome.  It also doesn't hurt that they have world-renowned Down syndrome experts working there!  Michelle is simply an inspiration...
And Abbey...well, Kayla just loved Abbey...
Madeleine Will
Madeleine has been an advocate for people with Down syndrome for over 30 years!  She is currently the Director of the Policy Center for the NDSS and is so wonderful...and so is that cute little boy, Nicholas, by the way...

And lastly...
Congressman Pete Sessions
Just another day in DC...Kayla hanging out with politicians...fist pumpin' and blowin' it up...

Congressman Sessions spoke about being a fraternity brother of Pi Kappa Alpha...and I have always been a proud sorority sister of Alpha Xi Delta, but Congressman Pete Sessions, of Texas, reminded me just how amazing greek organizations can be.  Congressman Sessions has two sons, Bill {president of his chapter of Pi Kappa Alpha} and Alex {who just happens to have Down syndrome}.  Holding back tears, the congressman explained how proud he is of his fraternity.  This  weekend, Alex was initiated as an honorary brother.  But his pride reaches beyond that.  The congressman has received texts and emails, from men who have never met Alex, stating they couldn't wait to call Alex their brother.  That is the true meaning of brotherhood.  Ties that reach far beyond friendship.  Inclusion.  At the end of the day, that's all we really desire.  To be included.  All of us.  Despite our differences.

We went to Washington, DC with the NDSS Buddy Walk on Washington to ensure Kayla will have the same access to living her fullest potential as her typical peers.  If I accomplish nothing more in my life, I hope to gain a brighter future for all people with intellectual disabilities.  Ensuring their abilities don't go untapped or unnoticed.

We all deserve to live our best life...and I will ensure that Kayla's life is extraordinary.
Live your best life and along the way be sure to help those around you live their best lives, too...


  1. What a great way to advocate for a wonderful cause. I had never heard of the ABLE Act, but I sure hope that is something that comes to fruition. Way to get out there and pound the pavement!!!

  2. Thank you so much for doing this!!

  3. This is very meaningful for me because I teach a disabilty class to our Tower Hill 7th graders and I will share this with them

    1. That is wonderful! Thank you so much for making a difference! Should you ever want/need someone to speak to the class, I would be more than happy to do so!

  4. Dear Amy,
    Just read your blog and learned a lot. You and Rick are amazing parents and I know you will both reach your endeavors for dear Kayla. I am very proud of you both. Kayla is such a beautiful little girl.

    Love, Aunt Donna