Down Syndrome Diagnosis Information & Support Act Testimonies

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Down Syndrome Diagnosis Information & Support Act

This legislation would make available to expectant and new parents, upon receiving a diagnosis of Trisomy 21 (or Down syndrome) from their health care facility or practitioner, educational and supportive information provided by the Nebraska Department of Health and Human Services in conjunction with local and national advocacy organizations.

The link to the Nebraska summary, and what organizations are supporting it, is HERE.  The actual bill 891 via the Nebraska State Legislature is HERE.

If you want all of my feelings and thoughts from the day Marcus and I testified – check it out here – “We Did It! (Part One)”

Here is the copy of the testimony Marcus gave: 

My name is Marcus Sikora. I wrote a book called Black Day: The Monster Rock Band.

I support bill LB 891.

It will help parents and people with Down syndrome.

 

My Testimony 

My name is Mardra Sikora, my son was born in Kearny, NE, a quick 25 years ago.

The day after he was born a social worker approached his father in the hospital hallway – while I held my newborn with his tiny fingers curled around mine, she asked we would be “taking the baby home.” Before I had a chance to get to know my child at all, let alone the implications of Down syndrome, the first provided option was to walk away from my own child.  

Today you have heard plenty of birth stories more recent than ours that show the gap in quality and helpful information given to parents regarding Down syndrome. Obviously, this information needs to be concise and current and available to parents, prospective parents, and all of the professionals working with these parents. And while the parents are the first folks who need to have these details, I would like to stress that it is the child with Down syndrome whose life will most be affected.

It is true that children and adults with Down syndrome have certain medical and developmental challenges that need to be addressed and cared for. It is no surprise/secret that the changes in educational expectations, improvements in medical care, and simple social acceptance have all played a part in people with Ds better reaching their potential. They’ve been proving this to society via becoming TV and movie stars, getting married, going to college, or like Marcus, creating children’s story books.

However, there are segments of our community that are still not getting enough information and support that the families need to help their children thrive. I support this bill not only for the sake of the parents, but also for the sake of the many beautiful people living, newly born, and yet to be born with Down syndrome. I believe that by giving families quality information and support at the beginning of life will better equip those with Down syndrome to reach their potential. Then we, as a community, will experience the positive impact of having people with Down syndrome thriving in our communities. 

Then I added, something like this because I’m working from memory and pencilled scribbles at the bottom of my page.

I’d like to also add two more notes to the senators. One is the question came up about a federal law. Yes. There actually is a federal law on the books about this already. It is called The Prenatally and Postnatally Diagnosed Conditions Awareness Act. As I understand it, it’s one of those laws that are passed as a good idea but there’s really no teeth to it. It is up to the states to actually make the law work. So really, today, we are asking you all to help bring this law into effect.

The second thing is that I’d like to point out that when Marcus was born Nebraska was one of only five states to offer early childhood education from birth. I was very proud to be in a state that appreciated the value of my son’s future with this, of committing to his potential.  It’s been pointed out today that there are 14 other states that have adopted this information act and I’d like to see Nebraska continue its commitment to being on the forefront.  

Again – the long version is here. Thanks for coming by and feel free to contact us with any questions.

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