I'm going to take a moment to talk to you personally. I don't do this much, most of our articles are very educational in nature, but I need a break from research. I just want to be human right along with you if that's ok.
Over the last few months I've been coping with the reality that no one out there wants to help us. What do I mean by that? Well it all started with the public school system. Aiden was involved with a government program here called Early Steps. Part of the services Early Steps offers is called transition. In transition they set up a IEP meeting with your local school system to determine if your child qualifies for services through the public school system. The school system representatives informed us that Aiden does not qualify for an IEP based on his intelligence. They, in all their wisdom, made the determination that there is not an "educational" need for Aiden to receive these services. Now, the school system will gladly accept the medical diagnosis to get the addition money the receive from the government, but they will not give my child the protective contract he needs to ensure a successful educational career. You didn't know that the schools are paid for "special needs" kids? Yep, they surely are. The McKay Scholarship, here in Florida, takes that money away when the school fails your child. The school did say he should have a 504 plan. Which is a step down from the IEP and its not binding. I informed them of his sensory struggles, but that didn't seem to matter.
We then went and filed our tax return. I found out that amount of money we had paid out of pocket for doctors and therapy expenses did not meet the threshold necessary, according to tax code, for a credit. I was floored. We had been paying so much money, but it wasn't enough.
After that we attempted to secure secondary insurance for Aiden through Florida Kid Care. We have primary health care through our employer, but you have the ability to secure secondary insurance through another agency. One of the things Kid Care advertised that they offer is secondary insurance through Medicaid. However after Aiden was denied coverage through Kid Care (because he has insurance) we were told Kid Care does not actually forward applications to Medicaid. So my brainiac question was why does it say you represent them on your website? They informed me that their website does not advertise that information. A lie. You can go to their about section and see the information for yourself.
After our let down with Kid Care we reached out to the SSI department. We applied and went into the meeting. First of all allow me to explain a few things, to be fair. My husband and I are both employed. He is full time and I am part time. Now you'd say why aren't you full time? The answer is simple, we cannot afford daycare for our kids. Part time day care costs the equivalent of our mortgage payments, monthly. There is no possible way for us to swing that and it won't cover weekend work hours. That is why I am part time, but I easily put in about 30 hours a week at work, while I am there. So with that explanation in place, my husband and I were only coming out ahead about $200 a month, at best. Aiden's medical bills cost us about $500 a month with insurance. When we went for our SSI appointment they only wanted to know two things: 1- What is your gross income? and 2- Do you own anything? They didn't care about our household bills, because electricity is optional evidently. They told me that I could ask for help from Medicaid as a secondary insurance and that is when I broke down.
I have just started coming out of the withdrawal I have been feeling for months now. All the "fight" drained from me. Aiden missed appointments with specialists and I didn't care. Thankfully he is a very healthy little guy on his own. We have been trying to figure out what was causing his constipation, but we have that under control now, and that was the appointment he missed. I was spending money on doctors, therapists, and specialists hand over fist. Every week we had an appointment to keep and we needed help. Help we weren't getting and still aren't getting. My husband picked up two extra work shifts a week and that has off set our need.
This is why I lost it. I didn't feel like I was asking for much. I didn't feel like what I was asking for was out of line. I wasn't asking for my whole family, I was asking for Aiden alone. Just something to help off set the money we are paying for his care. In this country, you have to be drowning in order to get help. We were barely keeping our heads above water and were asking for help. You can only be smacked down so many times before you feel completely drained. Now I'm angry, but I don't know who to talk to about it.
In a sense we are lucky and I know that. Aiden is high functioning and if he weren't we would be worse off, but that is the mind blowing thing. I know people who have loved ones on the lower end of the spectrum and they have had to refinance their homes and take loans in order to pay for medical bills. What is it, exactly, that families in America have to do? I pay money to my government, involuntarily, for the benefit of others. I have met people who draw SSI benefits for things like epilepsy, yet they drive cars. For depression, yet they commit crime. So I fail to see how my request or better said requests are ungranted. And I feel that they escalated in the most proper manner I could think of, from "least" to "most" impactful.
Our story is repeated hundreds, maybe thousands of times, all over the country, by so many more families. Staying strong and present is hard after enduring so much. In times like this its hardest, but most important to remember you're not alone.
Thank you for letting me be human. Thank you for understanding, some if not all of what I am saying. Be sure to follow us on Facebook for the latest updates.
Over the last few months I've been coping with the reality that no one out there wants to help us. What do I mean by that? Well it all started with the public school system. Aiden was involved with a government program here called Early Steps. Part of the services Early Steps offers is called transition. In transition they set up a IEP meeting with your local school system to determine if your child qualifies for services through the public school system. The school system representatives informed us that Aiden does not qualify for an IEP based on his intelligence. They, in all their wisdom, made the determination that there is not an "educational" need for Aiden to receive these services. Now, the school system will gladly accept the medical diagnosis to get the addition money the receive from the government, but they will not give my child the protective contract he needs to ensure a successful educational career. You didn't know that the schools are paid for "special needs" kids? Yep, they surely are. The McKay Scholarship, here in Florida, takes that money away when the school fails your child. The school did say he should have a 504 plan. Which is a step down from the IEP and its not binding. I informed them of his sensory struggles, but that didn't seem to matter.
We then went and filed our tax return. I found out that amount of money we had paid out of pocket for doctors and therapy expenses did not meet the threshold necessary, according to tax code, for a credit. I was floored. We had been paying so much money, but it wasn't enough.
After that we attempted to secure secondary insurance for Aiden through Florida Kid Care. We have primary health care through our employer, but you have the ability to secure secondary insurance through another agency. One of the things Kid Care advertised that they offer is secondary insurance through Medicaid. However after Aiden was denied coverage through Kid Care (because he has insurance) we were told Kid Care does not actually forward applications to Medicaid. So my brainiac question was why does it say you represent them on your website? They informed me that their website does not advertise that information. A lie. You can go to their about section and see the information for yourself.
After our let down with Kid Care we reached out to the SSI department. We applied and went into the meeting. First of all allow me to explain a few things, to be fair. My husband and I are both employed. He is full time and I am part time. Now you'd say why aren't you full time? The answer is simple, we cannot afford daycare for our kids. Part time day care costs the equivalent of our mortgage payments, monthly. There is no possible way for us to swing that and it won't cover weekend work hours. That is why I am part time, but I easily put in about 30 hours a week at work, while I am there. So with that explanation in place, my husband and I were only coming out ahead about $200 a month, at best. Aiden's medical bills cost us about $500 a month with insurance. When we went for our SSI appointment they only wanted to know two things: 1- What is your gross income? and 2- Do you own anything? They didn't care about our household bills, because electricity is optional evidently. They told me that I could ask for help from Medicaid as a secondary insurance and that is when I broke down.
I have just started coming out of the withdrawal I have been feeling for months now. All the "fight" drained from me. Aiden missed appointments with specialists and I didn't care. Thankfully he is a very healthy little guy on his own. We have been trying to figure out what was causing his constipation, but we have that under control now, and that was the appointment he missed. I was spending money on doctors, therapists, and specialists hand over fist. Every week we had an appointment to keep and we needed help. Help we weren't getting and still aren't getting. My husband picked up two extra work shifts a week and that has off set our need.
This is why I lost it. I didn't feel like I was asking for much. I didn't feel like what I was asking for was out of line. I wasn't asking for my whole family, I was asking for Aiden alone. Just something to help off set the money we are paying for his care. In this country, you have to be drowning in order to get help. We were barely keeping our heads above water and were asking for help. You can only be smacked down so many times before you feel completely drained. Now I'm angry, but I don't know who to talk to about it.
In a sense we are lucky and I know that. Aiden is high functioning and if he weren't we would be worse off, but that is the mind blowing thing. I know people who have loved ones on the lower end of the spectrum and they have had to refinance their homes and take loans in order to pay for medical bills. What is it, exactly, that families in America have to do? I pay money to my government, involuntarily, for the benefit of others. I have met people who draw SSI benefits for things like epilepsy, yet they drive cars. For depression, yet they commit crime. So I fail to see how my request or better said requests are ungranted. And I feel that they escalated in the most proper manner I could think of, from "least" to "most" impactful.
Our story is repeated hundreds, maybe thousands of times, all over the country, by so many more families. Staying strong and present is hard after enduring so much. In times like this its hardest, but most important to remember you're not alone.
Thank you for letting me be human. Thank you for understanding, some if not all of what I am saying. Be sure to follow us on Facebook for the latest updates.
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