I can not wrap my head around the idea that people who are born with a genetically proven disability can only truly receive their full disability benefits without a special waiver. These waivers take YEARS. My child is perfect and precious - she is 4yrs old and has Down Syndrome. There are many difficulties we face that aren’t always seen. More than anything having Medicaid when you have a child with complex health needs is detrimental in knowing you can ensure they get the care and aids in place that they need to be the best they can possibly be. We are a family of six, supported on my husband’s school teacher salary alone, I work very hard raising our children and being sure our child with Down Syndrome gets all the therapies needed, interactions and activity to help her reach her fullest potential! But the constant fear of her losing her medicaid or us being able to afford her therapies, equipment, or anything else she needs has wreaked havoc on our anxieties, draining a lot of joy some days. We have great insurance through my husband’s job but medicaid as a secondary for her makes the copays and meds, equipment much more feasible. There is so much more I could elaborate on about this.
Please, please help to remove the need for a waiver for people with genetic disabilities! There are so many people that abuse the system or claim to have “a bad back” or whatever other thing going on that makes them disabled. Why is it that my child, anyone else with an extra chromosome or other genetic disabilty must jump through hoops to maybe someday get a waiver that will grant them full disability benefits? Please help correct this!