[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.


[[Page H8283]]


  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.
                                  ____

       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

[[Page H8284]]

     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.

                          ____________________