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.