Mommy got a call today with some exciting news. After almost three years on the waiting list for the waiver program in Utah, I am finally coming off 7/1! So a little background - when I was getting ready to come home from the NICU in California, my Mommy learned about California's waiver program. What is a waiver program? Good question.
"Under Section 1915(c) of the Social Security Act, Medicaid law authorizes the Secretary of the U.S Department of Health and Human Services to waive certain Medicaid statutory rqeuirements. These waivers enable States to cover a broad array of home and community-based services for targeted populations as an alternative to institutionalization."
What does that really mean? For someone like me with a trach and a feeding tube there was a time that I never would have been able to come home. And then along came Katie Beckett and her family fought to bring her home despite her medical needs and changed all that. The government realized the quality of life at home far exceeds that in a nursing facility and that it is actually more cost effective too. So waiver programs were created and allowed States to "waive" the financial requirements normally associated with Medicaid for qualifying kids like me. Instead of taking into consideration my parent's income, they look at my income instead. But waiver programes in most states are limited. Luckily, when I came home in California, I didn't have to wait. At that time, my parents were pretty sure they would move back to Utah some day. So just in case, they got on the waiting list in Utah. So here we are, almost three years later, and the wait is over! Now, we have only been living in Utah for two months but I would say that is pretty good timing.
By qualifying for the waiver program, my parents get some respite nursing hours but the biggest benefit is I automatically get signed up for Medicaid. And with Medicaid I will probably meet the criteria for some additional nursing hours. At this point should I meet the lifetime maximums on my parents insurance plans (not unlikely - already halfway there on Mommy's plan) then I will have Medicaid as a back up.
Peyton Nicole Smith