Mr. Speaker, my intention this morning was to get up and try to be eloquent when talking about the ABLE Act, Achieving a Better Life Experience, which we will vote on later today, but since yesterday, I have received four emails from…
Mr. Speaker, my intention this morning was to get up and try to be eloquent when talking about the ABLE Act, Achieving a Better Life Experience, which we will vote on later today, but since yesterday, I have received four emails from parents in North Dakota whose words are far more eloquent than mine could ever be.
I will submit all of their words into the Record, but I want to share a few of the highlights from these important emails from my constituents.
Roxane Romanick writes:
How exciting that we are at this point where the dreams of
the act passing may come true in the next days.
After writing a bit about the legislation itself, she writes this about her 15-year-old daughter, Elizabeth:
Due to her diagnosis of Down syndrome, she has the support
of an individual education plan at school. The school will
start working on a transition plan for her within a few
months. Passage of the ABLE Act will mean that we can start a
savings account for her in much the same way that we did for
her brother.
Jamie Christensen writes:
Every parent of a child with special needs has a unique
journey, but one thing is universal. We try to do the best we
can to ensure a life well-lived for our child. Our unique
journeys have another similarity--many of us agonize about
the future.
She talks about their journey with their 7-year-old son, Grady, who has crystal blue eyes and a full head of hair. She writes:
Like many families, we want to care for our children
equally, doing what we can to give them tools to help them
reach their full potential. Shortly after Grady was born, I
opened a 529 College SAVE account for Grady's big sister. It
was then that I realized I had no idea how to plan for
Grady's future. The ABLE Act is a huge step forward in easing
this anxiety.
Aaron and Rachel Schuler from Bismarck, who I know very well, have a 4-year-old daughter, Ella. Actually, Ella will turn 4 years old on Christmas Eve. Ella has two siblings, Isaac and Clara. They talk about Ella with great hope. They write:
She will be a crazy teenager, graduate and go to college,
work a full-time job and have a real, meaningful
relationship. We believe this for her. That is what makes the
ABLE Act so important to Ella and to people all over our
great country. It will help her reach and fulfill the goals
she desires.
How awesome.
And just while I have been sitting here in the Chamber, Marijo Schwengler of Fargo writes about their journey, about their 2-year-old son, David, one of four sons, who is diagnosed with Down syndrome. She writes:
I pray that seven weekly therapy appointments with an early
intervention teacher, physical therapist, occupational
therapist, and speech therapist will help him be the best
that he can be. We dream big for David. Why shouldn't we?
Indeed, why shouldn't they? But she cites this fact:
David must remain ``poor'' in order to receive the services
he needs. The ABLE Act would mean that we could start saving
for David's future today.
What an awesome promise that is.
My words would be inadequate, Mr. Speaker, but I submit these and the extended comments in these emails that I received in the last two days on behalf of Elizabeth and Grady and Ella and David and their peers, the thousands and thousands of families around our country who, in many respects, have a bias against them because they are disabled or have disabled children.
The ABLE Act that we will vote on this afternoon, Achieving a Better Life Experience Act, will go a long ways toward leveling that playing field, improving their lives, and improving the lives of our entire country.
Designer Genes,
A Down Syndrome Support Network,
December 2, 2014.
Hon. Kevin Cramer,
Washington, DC.
Dear Rep. Cramer: Many thanks to you and everyone in your
office for all of the work that you've done on the Achieving
a Better Life Experience (ABLE) Act. How exciting that we are
at this point where the dreams of the act passing may come
true in the next days.
As you know, Designer Genes of North Dakota has been
actively following the progress of the ABLE Act with many of
our other Down syndrome association partners across the
country. We believe that the opportunities that the ABLE Act
affords to our individuals with Down syndrome will make a
world of difference to their futures.
Last spring, my own daughter, Elizabeth, turned 15. Due to
her diagnosis of Down syndrome, she has the support of an
Individual Education Plan at school. Required by law, the
school will start working on a transition plan for her within
a few short months. Passage of the ABLE Act will mean that we
can start a savings account for her in much the same way that
we did for her brother. For too long we've treated
individuals with significant disabilities with an
institutional bias meaning that their need for support and
care is based on old history of requiring
institutionalization which included extreme poverty. Since
birth, Elizabeth has had the opportunities afforded to her by
the Individuals with Disabilities Education Act and the
Americans with Disabilities Act and has been fully included
in her community. These two laws establish support without
impoverishment and help to equal the playing field for
persons with disabilities. The ABLE Act will now do the same
because it recognizes that needing support is inherent to
persons with disabilities but does not require that they
should live a life without realizing their hope and dreams.
Elizabeth is a go-getter. Every day she has a new dream and
just yesterday she was googling recording equipment on the
internet because she's decided she wants to own a recording
studio. I have no idea where this dream has come from but
it's very real. She's convinced she's moving out of the house
when she's 18 and heading to college. I wish with all my
might that the dream will come true for her (well maybe not
the moving out of the house part). These dreams come because
every day she walks, learns, and belongs beside her peers at
Century High School, because someone fought for her right to
do so.
Thank you for your work on this effort, Rep. Cramer!
Roxane Romanick.