I often think about the days spent in hospitals with my child, thankful for friends, communities, and family that surrounded us and helped us through the hardest moments in our lives.
Then I look at our Legislature and the actions they have consistently taken to show they are not representing Nebraskans. That they do not care about families with disabilities. The corporation tax cuts passed instead of LB376 showed how out of touch many elected officials are with their constituents and the program.
As my son has never walked, felt grass under his feet, or used the restroom independently, the lack of knowledge and strength of programs that Nebraska has qualifies him as not disabled enough. That’s right. Not disabled enough. Not sick enough.
We work full time and carry insurance, but easily meet our deductible in two months with medical bills still coming in the mail. We and other families pay the monthly costs which includes $3,000 worth of medical supplies and $1,000 in medications. It would be beneficial for us to stop working, divorce, and use other assistance programs to meet our needs.
But instead we are asking Nebraska to not put families with disabilities in this position. You want parents of special needs kids to continue to work because we are determined, resilient, and adaptable. We want to keep working and keep our family together, so please don’t make us choose our family or our child’s health. We deserve to have both.