Yeah, we got DENIED immediately for supplemental security income (SSI) for disability assistance (Gaucher’s Disease is considered a “disability” as it lasts longer than 12 months and requires continual treatment). Once she asked my husband’s income, well, that was pretty much the end of the interview. The thing that really bothers me is that we aren’t wealthy people, we are middle class. Since I got put on bedrest in early June last year, we have been supplementing his income with our savings. With Hannah’s situation, I haven’t been able to go back to work. Now knowing that she is going to have IV treatments every two weeks, developmental therapy every other week, occupational therapy every week, not to mention a whole multitude of doctors appointments, I don’t know how I can go back to a “day job” since all of this happens during the week, especially with 2 other kids. I thought about going back to medical transcriptioning (what I was doing before I got put on bedrest) — but work was so scarce even before I left, I’m not even sure that is an option now since my hours would have to be so sporatic.
They don’t care that a substantial portion of our income will now be going to go to medical treatments even after the insurance company pays what they said they will! Even if my husband earned $1000 less a month, we would only qualify for $84 a month. Basically, unless you are living just above the poverty level with our family of five, you don’t qualify — regardless of your needs!
I asked if we could appeal their decision. She said “of course,” but it would continue to be denied because of our income. If we HAD the income they think we have, then we wouldn’t need the assistance!
What pisses me off, and I am pissed with “the system,” is that why do I have to pay for something that I can’t benefit from when I truly need the help? Seriously, that is just not right.
Do you know about the medicaid waiver program for medically fragile children? That’s what you need to apply for. We were denied SSI automatically, and applied for a spot on the medicaid waiver waitlist (it’s the HCBS program in Colorado; every state names their program differently and has different requirements).
If you let me know where you guys are, I will try to help you find the info on your state’s program. All states have a waitlist; the length of the wait and the loopholes for getting faster approval vary from state to state. In Colorado, the wait is 3-5 years, but if the child is hospitalized, they often can get approval fast-tracked before they are discharged, if they will need services to be cared for safely at home. If we get a g-tube next month, this is what we plan to try. Some states will fast-track you if you spend a night in a nursing home.
The first thing you will need is a denial letter from SSI stating you were denied based on income. Call back and ask for an informal denial letter; that should suffice for the waiver program. You should also contact your insurance provider and ask for their assistance with this- we have a case manager for L through BCBS, and she will work with us to try to get him fast-tracked the next time he’s hospitalized.
I totally understand how you feel about the working and income- I took 8 months off when we moved to CO (when L was six months old) in the hopes that having time during the day for appointments would help get us closer to diagnosis. It didn’t, and I had to return to work. After paying a nanny (L has an immune disorder and life-threatening food allergies that make daycare unsafe), I make *just* enough to cover a few bills. In our state, Medicaid will pay parents to work as CNA’s for their own child’s care. Since I’m an RN, I plan to do this when L reaches the point where he needs more care than we can manage with me working. If it’s 20 hours of care per week, it will equal what I take home now after paying a nanny.
Good luck with all of this, and let me know if I can help- we are still undiagnosed, but have been fighting through the system for almost a year, so I may be able to give you a few tips that will help.
Hang in there!
Rachel, mama to L, 18 months and still undiagnosed
I hear ya. I had a meeting with them today and they denied us as well. She told me unless my husband took a cut in hours, or if we had a child or two more than we would probably get it. Yup. That’s what she said. Unbelievable. I’m so sorry you are dealing with this. Where is the help when we need it!
Yea, that was the part that threw me for a loop. Disability isn’t based on disability, its based on income. It’s insane!
I don’t have time right now to appropriately respond, but my wife is an attorney and EVERYONE seems to get denied the first time. I have a cousin who is very sick (since birth) with parents who are high middle class and they have been able to navigate the system and get her health benefits, SSDI, preschool, etc. Don’t take no for an answer. Will post later or email me.
I had that problem as well with my daughter. They heard my husband’s income and that was the end for me as well. So what if we have a ton of medical bills for her? They don’t care.
Anyway, do your best to get a lawyer and see if they can give you a free consultation to see if you can get some help. There is a lawyer over here who specializes in this kind of thing. They did say if you can get approval, the benefits are retroactive to when you first applied. My poor mom brain can’t remember what else, but I would really look for a lawyer and see if you can fight this. I bet you can.