As you know, I work for the National Down Syndrome Society (NDSS) which is the leading human rights organization for all individuals with Down syndrome. I serve as the Manager of Grassroots Advocacy and the first registered lobbyist with Down syndrome, which means I work with the policy team and visit Capitol Hill to help persuade legislation that is crucial for the Down syndrome community.

The policy team also consists of Nicole Patton, who is the Manager of Grassroots Advocacy and Ashley Helsing who is the Director of Government Relations. She helps set up meetings on the Hill. For example, next week she set up a meeting to talk to the Department of Labor.

When we are on the Hill we speak to officials about the Transitioning to Integrated and Meaningful Employment act (TIME). We are trying to phase out 14(C) over the span of six years which allows businesses to get certificates enabling them to pay subminimum wage meaning individuals are still getting paid pennies per hour. This isn’t fair, so this bill is of the utmost importance. We have many co-sponsors on this act, but we could always use more. You can help by contacting your representatives and asking them to sponsor the TIME act.

This helps us in our fight to end #LawSyndrome. Down syndrome doesn’t hold us back, but these old antiquated laws do. We also want marriage equality. Two people with Down syndrome can’t be married, or those two people will lose their benefits. If they don’t get married, then the benefits stay intact.  This is what we have been working on and will keep working on until we see change.


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