TUCSON, Ariz. (KGUN) — Having a disability is hard enough on a person, as well as the family caring for them.
Arizona's current law makes it even more difficult for those living with Down syndrome.
The Division of Developmental Disability's system is not inclusive of this genetic disorder affecting chromosome 21.
It limits how soon a child may receive state services by forcing their family through a set of hurdles, sometimes up to two years.
"Once you turn six, the law here in Arizona requires that you have an evaluation proving cognitive disability because right now, Down syndrome is not listed as a diagnosis that would qualify someone to get into the system to start the process," described Advocacy Committee Chair and Advisory Council Member of the Down Syndrome Network (DSN) of Arizona Jill A. Nico, M.S.
The DSN has spearheaded House Bill 2113 developmental disabilities; Down syndrome, introduced by Representatives Michelle Udall (R) and Joel John (R).
The House of Representatives passed the bill unanimously, moving it forward to the Senate.
"So, this bill that's now passed through the House is in our state Senate this week for a hearing committee, and hopefully it'll pass," Executive Director of the DSN Jennifer O'Connell shared. "So, it'll add Down Syndrome as a qualifying category."
Absolute HCBS is sponsoring the bill, working with Goodman Schwartz Public Affairs.
Though people with Down syndrome may have cognitive disabilities, families feel burdened having to prove their child's disability when a DNA test from the doctor confirms the diagnosis quite clearly.
Arizona's advocacy lines up with World Down Syndrome Day coming up on Monday, March 21. The Southern Arizona Network for Down Syndrome is celebrating Saturday, March 19, along with the DSN.
"We do celebrate World Down Syndrome Day on March 21 in representation of three copies of the twenty-first chromosome," explained Executive Director of the SANDS Chelsea Hansen. "And it just a worldwide celebration. It's a day for all of our family members across the world just to celebrate loved ones and the amazing contributions that they make to just make this world a better place.
As H.B. 2113 continues its way through the Arizona legislature, families hope the current roadblocks limiting services to people with Down syndrome are removed.
Anyone interested in voicing their support for this bill, they can do so by visiting the Arizona State Legislature Web Application System.
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Caleb Fernández is a digital content producer for KGUN 9. After earning his bachelor's degree from Penn State in Advertising/Public Relations, Caleb went to New York where he learned production assistance, photography and art direction. Share your story ideas and important issues with Caleb by emailing caleb.fernandez@kgun9.com or by connecting on LinkedIn, Instagram, and Twitter.
