Fact sheet for the Down Syndrome Information Act

NSGC logoMany states have passed the Down Syndrome Information Act. More states are considering enacting it each year. A resource is available to help states implement the law consistent with professional guidelines.

In 2014, Delaware, Maryland, Pennsylvania, Louisiana, and Ohio joined Massachusetts, Florida, and Kentucky in passing the Down Syndrome Information Act (DSIA) into law. In 2015, Indiana, Illinois, Texas, and Minnesota enacted the law. In 2016, versions of the DSIA are pending in other state legislatures.

The National Society of Genetic Counselors has created a fact sheet for states to use to implement the DSIA that meets all the criteria of the Act.

The NSGC’s Fact Sheet

The National Society of Genetic Counselors has made available an excellent fact sheet on Down syndrome.

The content of the fact sheet tracks what I think is the best, most balanced way for presenting a Down syndrome diagnosis from the bullet point list in the 2011 NSGC guidelines.

Consider how these bullet points are balanced:

  • Babies with Down syndrome also have higher chances for feeding and digestive issues, hearing loss, vision impairments, and respiratory infections. Most of these conditions can be treated with good health care.
  • Individualized education programs can help children with Down syndrome reach their potential. Special education services at school can range from inclusion in the typical classroom with extra help to small group instruction. There are over 250 college programs for people with intellectual disabilities.
  • Individuals can be employed competitively or with supports; live independently or in a group home; and have friends and intimate relationships.

The fact sheet’s narrative concludes by recognizing that:

Research shows that the majority of adults with Down syndrome report that they are happy with their lives.

The NSGC Fact Sheet then provides a list of approved resources, based off of the NSGC guidelines, including those listed at the Prenatal Resources tab for this blog. Further, at the end of the fact sheet is space instructing the state agency to insert the information for local support resources.

Conclusion

Every state currently working on implementing and considering passage of the DSIA should look to the NSGC fact sheet as an example of what to do in providing parents balanced, accurate information about Down syndrome and available support resources.

Comments

  1. I agree that the PA information sheet is absolutely awful. I usually give it to patients, because legally I have to, but I tell them that I don’t think it’s very good. I personally find it offensive that I have to give it to patients. I will give them the Understanding a Down Syndrome diagnosis book and other info from the Down Syndrome Congress and National Down Syndrome Society.

  2. Deborah Durand says:

    I am a prenatal genetic counselor in Florida and trying to find the actual statute in Florida and access the information that the state mandates we hand out to prenatal patients after a diagnosis is received. I cannot seem to find the actual statute online. Is there a link available for us Florida genetic counselors? And are there links available for the statutes and required info in the other states?
    thank you,
    Deborah Durand

    • You can find a link to the Florida statute at this blog post. You can find statutes for states that have passed the DSIA through 2014 simply by entering their state names into the search box on the site.

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