Congressional Record, Volume 160 Issue 146 (Wednesday, December 3, 2014)

[Congressional Record Volume 160, Number 146 (Wednesday, December 3, 2014)]
[House]
[Pages H8282-H8284]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

SUPPORTING THE ABLE ACT

The SPEAKER pro tempore. The Chair recognizes the gentleman from
North Dakota (Mr. Cramer) for 5 minutes.
Mr. CRAMER. 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.

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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:

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.
____

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.
Our journey includes being blessed seven years ago with a
beautiful baby boy with crystal blue eyes and a massive
amount of blonde hair. His name is Grady and he has Down
syndrome. 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.
After attending informational sessions, agonizing over it
and meeting with a lawyer, we learned that we really had
little to no options to help ensure a life well-lived for
Grady. A few years later I lost my dad who was just 56, and
my anxiety heightened. Just what would Grady's future look
like if my husband and I died?
The ABLE Act is a huge step forward in easing this anxiety.
It comes down to simple things, like making sure there is
enough money for things like his over-the-counter allergy
medicine and expensive lotion that are not covered by
insurance, and assistive technology if communication
continues to be a struggle for him into adulthood. And it
means really big things, too, such as allowing us to dream
about a future that could include college, work and
independence. This dream just became more real because we now
have a vehicle to save for supports such as education,
housing, a job coach and transportation.
And specifically for Grady, it allows him some of the same
rights and opportunities to work and save for his own future,
just like the rest of his peers. Doing so will help him to
reach his full potential, ensuring a life well-lived that all
parents want for their children.
Jamie Christensen.
____

Our daughter Ella was born on Christmas Eve just about 4
years ago. Her birth was both shocking and confusing as she
was born with Down Syndrome. Quickly we began to realize what
a blessing she is through her smile, laugh, and genuine love
for others. While we understand that Ella's life will carry
certain hardships, we know that she is an absolute gift and
bright light to this entire world. Our lives have been fully
enriched by Ella and we plan to give her every opportunity to
grow and chase her dreams. She will be a crazy teenager,
graduate and go to college, work a full-time job, and have
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. Our goal from the
beginning is to provide every opportunity for Ella. The Able
Act will help her to reach and fulfill the goals she desires
to do. We must do everything we can to protect the benefits
Ella and others with Down Syndrome will receive, while giving
them every opportunity in life.
Aaron Schuler.
____

Last night at supper table, I told my family of 6, I am
going to write a letter of support for the ABLE Act. They
asked why so I told them. Without even considering that
David's disability may limit his workability, my 8 and 10
year olds replied, ``Well mom, if David can't save his own
money when he is older [he is 2 years old now], can't he just
give us his money and then we can save it for him. And when
he needs his money we can give it back to him?'' Hmmmm. . . .
My name is Marijo Schwengler and I am mom of 4 wonderful
boys ages 10, 8, 5, and 2. My youngest son David has Down
syndrome. My husband and I were not expecting this diagnosis
and we were not prepared. At first, we cried and mourned the
loss of the dreams we had had for him. We did not understand
what it means to have Down syndrome. We worried about how we
would tell his older brothers. I worried about my older sons
hating me because we have now burdened them with a `special
needs' brother. As scared as we were we promised to love
David and give him the best of everything just like his older
brothers.
In the days, weeks, months, following David's birth, we've
learned he was just like our other boys he just does things
on his schedule. He plays, he wrestles, he cries, he knows
what he likes and doesn't like. He

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loves books, balls, and super heroes. He knows over 30 sign
language words. And just like my other children at his age, I
do not know where his cognitive ability will be when he grows
up. What I do know is all individuals with Down syndrome
experience some kind of cognitive delay. I pray that 7 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?
My son is young and only time will tell what services and
programs he may or may not need when he is an adult But one
message is clear: David must remain `poor' in order receive
the services. Even if the services may not provide for all
his needs adequately. We can't save for David in the same way
we can for his brothers. We can't teach David to save his
money. As child, I grew up in family that lived paycheck to
paycheck, I promised myself to change that for my kids. lam
in a position to do that but David's little extra chromosome
prevents me from saving in a 529 for him or letting him have
his own little savings account at the local bank
The ABLE Act would mean that we could start saving for
David's future today. We could teach David the importance of
saving We could make sure that David's brothers do not have
to feel financially burdened by the cost of taking care of
their littlest brother The fear of my son's hating me because
of David's Down syndrome was silly, his brothers love him to
pieces and they would do anything for him. David and everyone
with Down syndrome or any other special need deserves the
right to save money for their future. Even my 8 and 10 year
old boys get it! Please pass the ABLE Act.
Marijo, Jason, Jacob, Andrew, Simon and David Schwengler,
Fargo, ND.

____________________