Selling short –

Last night I read a story in the business section of the New York Times – “Illumina Buys Maker of Down Syndrome Test”. The test is a less invasive procedure that “…uses a blood sample from a pregnant woman to determine whether her baby will have Down syndrome or some other chromosomal abnormalities.”

Great deal for Illumna, a leading manufacturer of DNA sequencing machines to have the foresight to purchase the privately held Verinata Health creator of the test. All indications are a future rise in stock. Shake your moneymaker, Illumna.

For people with Down syndrome it looks like your stock is going down even more. 

(Currently, without this new test less invasive and earlier detection testing, about 90% of fetuses that are determined to carry Down syndrome are aborted.) 

As a parent with a child who has Down syndrome I fear that as we continue to eliminate people with Down syndrome research funding and social services will likewise continue to decrease. Why invest money in people who will no longer exist? It’s not financially sound. It’s not good business. 

We have already started obliterating the term ‘Down syndrome’ in relation to treatment and services. Thor doesn’t receive any services because he has a diagnosis of Down syndrome he receives it because he has ‘developmental delays’. After his kindergarten year ‘developmental delays’ will no longer be a valid term for receiving services. In fact, he is being tested next month to determine a new category of special need that will allow him to receive support.

We discovered a couple years ago while Thor was in pre-school legislators in our state decided that developmental pre-school providers should receive approximately $23.00 less per hour for providing services to a child with Down syndrome over a child who may have more or less need for developmental intervention.

Because of this rate difference, one of the State’s largest providers of special needs services moved their focus away from children with Down syndrome and other children less financially desirable in favor of children who were more financially appealing.

Our city is home to an amazing pediatric behavioral clinic. The staff and services are so critical that they have a year long wait list. There are slots held for children with certain special needs that do not include children with Down syndrome. We were able to get a slot for Thorin by finding a sympathetic advocate. The services he has received had made a tremendous difference. These are services most children with Down syndrome would benefit from.

We know that research, health care, adequate social services and intervention have made a real difference for people with Down syndrome. Life expectancy has risen from 25 years-old in the 1980’s to 50 years-old today. Some people with Down syndrome drive cars, have jobs, live on their own, go to post-secondary schools and get married. Yet we are already planning for them having less.

In fact, we are planning on them being gone.

This entry was posted in Adopting, Advocacy, By Notatypicalmom, Down syndrome, education, Health, Inclusion, Medical, Parenting, Special Needs by Kari Wagner-Peck. Bookmark the permalink.

About Kari Wagner-Peck

Kari Wagner-Peck lives with her husband and son in Maine. She is a blogger, writer & social justice storyteller who unschools with her son. She also has a M.S.W. and was at various times a practicing social worker, documentary videographer and film festival director She is the author of Not Always Happy: An Unusual Parenting Journey, May, 2017, Central Recovery Press. She has been published at The New York Times, The Huffington Post, The Good Men Project, The Sydney Morning Herald, Parents, BLOOM and Love That Max among others. Follow her on Twitter @atypicalson and like her at Not Always Happy Facebook page. Email her: atypicalson@gmail.com

6 thoughts on “Selling short –

  1. Can’t imagine a world without Maggie or Thorin? They are such a gift. I am sad and broken hearted to think that 90% of people abort without ever truly knowing what they are giving up. Perfect doesn’t exist, but if it did Maggie and Thorin would be perfect examples! I wonder if we could test before birth for things like asthma or speech delays or even test say for if your child would be athletic would people abort them too if they didn’t like the results? Who are these people to play God and say down syndrome, no way and just abort? I wish people would take the time to get to know Maggie or any person who has down syndrome and see what gift they too are being given! Love your posts! Really would love to get the twins together soon!!! Hugs, Amy

  2. My grandson is a special gift from God. I have had love and laughter that I would have never known without our Thorin. You knoe life is worth living when a beautiful child runs to you, arms wide open, and yells “Hi. BABA”. My entire day is filled with blessings. Iam sorry if you donot have this.

  3. After reading this post I feel very fortunate to live where I live. Three months ago, yesterday, I gave birth to a beautiful baby girl. Twenty hours later I was informed that she may have Down Syndrome, this was later confirmed by genetic testing. Within a week from discharge (she was in the NICU for 12 days), a group called Tri-Counties Regional was at my house with a team of therapists ( early interventionalist, speech, OT, and PT) were at my house evaluating my 3 week old. A month later the team was back at my house to discuss the findings and recommendations. My daughter now receives one hour a week of therapy from the early interventionalist and every other week the OT/PT come with her. All of this is paid for by the county we live in. My daughter will qualify for this, because of her Down Syndrome, until she is three.

    • First, congratulations! Second, we have those services as well. Our son’s biological family did not avail themselves of any services.

      It sound like things are going well for you! Best, kwp

  4. why are you upset about having to work harder for extra services? he’s “more alike than different” correct? so why should he get anything? or do you think women who terminate for down syndrome buy the idea that have a child with DS does make them irreconcilably different and logically opt not to select that life for their children? what is the problem with losing those social services?

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