Nancy from Greeley

My daughter is medically disabled. She has a lot to offer and her limitations are not her major impediment to her contributing to society. Government restrictions are. My daughter has cystic fibrosis, the leading fatal genetic disorder, Crohn's syndrome, and a host of related disorders secondary to her primary diagnosis. During her childhood, we were blessed with assistance in paying her extreme medical costs because she qualified for the Model 200 program that allows severely impacted children in middle-class families to be on Medicaid. This program helped our family survive financially. The assistance in paying her medical costs was vital to both our ability to access the medical care she required and for us to avoid bankruptcy.

When she came of age at 18 years (still in high school), this program was no longer available to us. She now had to emancipate in order to be eligible for Social Security benefits for the disabled. That made her eligible for regular Medicaid, the vital insurance piece for both her and her parents.  She is under 21 so we are still responsible for her medical fees. Only now she was no longer "co-pay free" and her co-pays eat into the small check she receives on SSI, her only income. However, she must keep her SSI in order to keep the Medicaid, and she must keep that because even the best private insurance does not cover all of the costs associated with her medical care, and what is left to the "patient's responsibility" is overwhelming!

Back to keeping the SSI: There are limits as to how much she can earn. My daughter will have great difficulty holding a job in the traditional sense. When her cystic fibrosis is at its best, she has trouble enough, but it is often a problem for her and she spends 2-3 weeks at a time in the hospital, 5 to 7 times a year. She had to drop out of college because of her illness. There are times when she can work, but they are not consistent nor predictable. However, if we were to over earn in any given period, she would lose her SSI and, therefore, her Medicaid.

Filed in: Make Your Mark > Health Care