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What Will Happen to my Sick Child After I'm Gone?

By: Radha S., Alachua County

My daughter was placed with us as a foster child at 3 months old and her adoption was finalized just before her third birthday. As a child she was active and pretty healthy, up until 7th grade. During that time, she suffered a series of traumatic experiences that left her scarred physically and mentally. After 18 months of pain, she was finally diagnosed with juvenile arthritis, a debilitating condition which made it difficult for her to experience a typical adolescence.

The pain was primarily in her knees, spine, jaw, and toes. She could no longer dance, her life passion, or play clarinet in the band, as these activities caused too much pain. She finished eighth grade, but beginning with the first week of high school, the arthritis moved into joints it hadn't been before. She had braces on her wrists and ended up in a wheelchair by the 6th week of school. Medications she tried burned holes in her stomach or destroyed her immune system response so she ended up sick for months. She missed most of high school because of the physical pain, medication side effects, fatigue, and the major depressive disorder and anxiety that followed. She recently turned 21 and lost her Medicaid insurance coverage that she had had all her life because she had been in foster care.

We applied for social security disability for her just before she turned 18 years old. We waited three and a half years only for her application to be rejected. We are currently appealing the decision. In the meantime, she has no health insurance and struggles with physical and mental illnesses. It's not the worst case of arthritis or the worst case of depression, but together they are debilitating most of the time. Luckily, we have been able to find a financial assistance program through the local hospital. There she can see a doctor regularly, but we have co-pay fees out of pocket. While she would like to work, her condition makes it very difficult for her to be consistent. She doesn’t know how she will feel from one day to the next. Ten days ago she was doing pretty well. This past week, she has been having a bad flare up. Last night she was crying because the pain was so bad. We can't think of a type of employment she can do that could accommodate her inability to be counted on to show up to work day after day.

I’ve retired early from my career to be my daughter’s caregiver. I work part time as a consultant and have been able to purchase health insurance for myself through the Marketplace. This has been a lifesaver for me. However, even with medication my daughter is not able to live independently. The arthritis causes her joints to lock-up randomly. She has had several falls and, in the past, has been afraid to shower for fear that her hips might lock up. Her depression and anxiety can keep her isolated, but she is now more aware of the warning signs of a mental break. I worked for several years in the mental health field and have quite a bit of training working with families and teens. Those skills have helped me guide my daughter through some very difficult years. When she would get depressed as a teen, it felt like she was being wiped out by a tsunami. Now when the depression arises, it’s like a wave, and she has learned to ride the wave to get to the other side.

To assist my daughter, I have learned to navigate programs that assist with food, health insurance, and housing. My son has also been a huge advocate and supporter of his sister. If she could get on Disability, many of her problems would be resolved. She would have a small income which could be used to pay her rent (they adjust rent to income in the HUD subsidized apartment we have moved into) and most importantly she would automatically have health insurance.

My daughter’s health conditions have significantly changed our lives. I’m currently 60 years old and she’s 21. I’m likely to die before her. I can’t help but worry about what will happen to my daughter after I’m gone. Right now, we are trying to take it one day at a time. My daughter is currently working on her GED and thinking about college or a short-term job training program. She is interested in building things. But most of the trades (carpentry, welding, etc.) require physical strength and stamina. I would love for her to be physically and mentally healthy so that she could have the life she chooses.

Much as she loves me and appreciates my assistance, she doesn't want to be obliged to live with me forever due to her own poor health issues. I can see her being a peer counselor and helping those who have similar issues someday. Nobody chooses to have mental or physical illnesses. The next big hurdle for our family is her disability appeal. If she qualifies for disability, she will also receive Medicaid. If she doesn’t get the Medicaid, I’m not sure what we will do. I just don’t know. There is not another option.


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