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Legislators turned their backs on families with disabled children

Legislators turned their backs on families with disabled children

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Families with kids with developmental disabilities need support such as LB376, the Family Support Waiver, would have provided. My son has a developmental disability and is on the developmental disability waiver wait list. He attends therapy daily, for which we pay thousands of dollars every year. When your child is nonverbal, you use every option to help them interact with others and the world around them.

There are also hard choices when caring for a disabled child. Is it more important for your child to speak or eat, because you can’t afford all therapies? How do you get them to therapy in the middle of the day? Specialized child care is necessary because after school programs do not accommodate kids with disabilities, but without Medicaid access it can be unaffordable. Children on the developmental disability wait list need help to eat, dress, bathe, use the restroom (or are in diapers), and can’t go outside without help, not to mention extra medical and therapy costs.

We try to increase independence and reduce the need for significant support after aging out of the school system (which costs the state more than providing help at a young age). My son works every day to learn to live independently, and state senators turned their backs on kids like him because it is too “costly.” Senators that voted against this bill told families to continue to shoulder that cost and that they do not deserve relief. The waiver wait list is eight years long, with 3,000 individuals waiting for support, and Nebraska turned down an opportunity to help 850 of them.

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