The last time that I took Carson to see endocrinology at the hospital it was suggested to me that I file for Social Security Disability for him because he is unable to manage his diabetes on his own. I briefly looked into it on the Internet (big surprise lol) and decided to take the plunge.
I called the main number on Thursday two weeks ago. The woman on the phone was really nice. I explained to her that Carson has developmental disabilities and was just diagnosed with type 1 diabetes. She asked me how old he was and when I said 5, she told me that I needed to have an appointment for an interview at one of their offices. She looked at the schedule and the office that it suggested I go to was making appointments in March. I asked if I was able to go to an office that was closer to our home and when she said yes she looked and found that they had an opening for the following Tuesday, 4 days away. I was excited they had something so soon so I took it. She told me to bring his birth certificate and his names of his medications to the meeting.
Stupid me, I thought that this would be a simple process. The next day I got a packet in the mail with a list of things that they would need for the interview and instructions on how to fill out a questionnaire online about his health history. I got right to work. The health history wanted every illness, doctor's appointment, test etc that he had ever had in his lifetime. Can I just say thank god for insurance apps that let you go back and see that far back in time otherwise I would have never known it all.
The packet had very limited information on what specifically they would be looking for in terms of disability and what would make him ineligible. The list of items included w2 information for Mike, social security numbers for everyone in the household, life insurance policies, any doctor or school information we had handy etc.
I was so nervous driving to the interview. The place was crazy. You walk in and there is a kiosk that you punch in your social security number and answer a couple of questions. It then pops out a little ticket and then you sit and wait for your number to be called. I had Carson with me in his stroller but he had cracked the screen on his iPad the week before and it was being fixed with good 'ole Geek Squad so I had nothing to keep him entertained. The place was dirty and the people in there were pretty interesting. They even had an armed security guard at the door just to make you feel even more uneasy about being in a government building.
They called my name and had me go into another little room off of the main room. It had little windows with shutters on them and two chairs at each window. The woman who interviewed us was really nice. She had a thick accent which sometimes made it hard for me to understand what she was asking and I know she probably thought that I was an idiot because it took me a few seconds to work out in my head what she was asking before I would answer her.
The first thing they tell you is that Social Security Disability is a needs-based program. For that reason they take all of your income into consideration before they can make a decision about coverage. They asked all sorts of things that I wasn't prepared for. They wanted to know how much we owed on my car, and how much our cars were worth and how much cash we had etc. It was so shocking to me. She asked how much money we had in savings, if Mike had a 401K, if we had life insurance and how much the pay out was for that particular day. We went through most of it but there were a few things I wasn't sure of.
We then went on to Carson's information. When he was diagnosed with each of his problems, what they caused, his meds, his doctors, his therapists etc. Looking at him she could tell that I wasn't pulling her leg that he needed help with things. It seemed easy enough.
Then after about an hour the interview was winding down. She then wanted to know what banks we used. I told her mine and how much money I had in my account. She then asked for Mike's. I told her the name and then told her about how much I thought he had in CHECKING because he doesn't have a savings account. She stared me dead in the face and said, " I asked you about that earlier." I said, "No. You asked about savings. You didn't say anything about checking accounts." I just figured they wanted to know how much we were saving and getting interest on and because we don't share bank accounts I really couldn't give her an exact amount.
She told me that anything over $5000 in ANY equity would make Carson ineligible for SSDI. My heart sank. I knew that Mike had just got finished paying bills the night before but I honestly didn't know how much he had and I told her that. She told me that he needed less than $4000 in his account and basically told me to go home and pay bills just so we would be under that line. I left feeling hopeful but once I called Mike and told him what she said I knew that it was going to be a struggle. They couldn't automatically look at Mike's information without his permission so they sent home a form for him to fill out either giving or denying permission for them to look into bank records etc.
We had refinanced our house a while ago and had borrowed money against the equity to pay off credit card debt that we had. I didn't realize that we still had a little bit of that money left over and then of course Mike gets paid every 2 weeks so that's just more money going into that account. We fought for days on what to do. He wanted to drain the account completely and pay on my car and I thought it was a terrible idea. Right now we are in the hole every month about $120 because of all the meds we have to pay for. That was why I wanted to apply for SSDI in the first place thinking Carson would get Medicaid for disability as a secondary insurance and it would help with the medical/pharmacy bills. I knew that if he was turned down for another reason then we had just screwed ourselves by draining the account. Again-we don't have a TON of money in the account but it is over what SSI says we can have. I just like the idea of a cushion just in case something happens. We just had to replace our dishwasher right before Christmas and Mike's car needs the transmission rebuilt. What if the furnace goes next? That's not exactly something I can ignore if it breaks especially since it's so frigging cold and we have 7 inches of snow and ice on the ground.
Plus the bank records they want are for Jan 2014 so it would look really suspicious to have the money in the account and then magically right after we have the meeting poof the money disappears. And then on top of all that when you read the form they wanted him to sign it says in itty-bitty print that basically they can go into our bank accounts any time they want to just for the hell of it because we signed the form. Total shit. So unfortunately this am I put in a call to the contact person handling Carson's file and told him that we have too much money in our bank account and we needed to withdraw the application. He didn't call me back today so I have no idea what happens from here at this point.
It's really a shame that they don't look at the big picture about all of our finances. If they saw the medical bills we have from his hospital visit ($37, 000 before insurance) , the cost of his meds plus Mike's etc they would see that we really do need the help but of course it doesn't work that way. I wasn't in it for the money anyway. I was hoping for help with paying for all of his hospital stuff and his medications but also I thought that if he was deemed disabled by the government now that it would be so much easier when he is older for me to try to get guardianship of him like his geneticist told me I will need to do.
Maybe if that guy calls me back tomorrow he will have more useful information for me. Until then I'm going to bed. B will be up in 6 hours.
XX
Monday, February 10, 2014
Sunday, February 9, 2014
School: Day 16
Things around here have been crazy and I missed posting last week about school. When I got there I had a meeting first off with the psychologist, Amber and the preschool coordinator to sign off on scheduling Carson's exit evaluation for preschool. It's sad that after 3 years of seeing the same faces every week it's coming to an end and it's not fair because we have missed so many days because of the weather too. I have to admit that I am excited to see what the results of this test will be and see how much he has improved and what that will mean for him cognitively. When he was tested at the age of 3 he was between 12 and 15 months- so about half his age.
While I was in the meeting Carson was working with Patty and her student on the stairs. They scattered the numbers around on the landings this time and had him find the numbers in order and bring them down. She said that he went all the way up to the nurse's tower which I was sad that I missed. He is doing reciprocal up and 2 feet per step on the way down with limited help.
Our meeting ran a little over so when I made it down to the classroom Patty, LaQuita and the student were trying to contain Carson and the other little boy while his dad was in his meeting after me. I snuck in the door and made my way to the back of the classroom. Carson had been doing so well without me that I didn't want him to see me and come "running" to me. LaQuita read the boys a book and Carson was really into it. He was pointing to the items in the book that she would ask him. The teachers noticed while LaQuita was reading that the other little boy in the class was coughing and felt warm. When his dad came into the classroom they told him and he admitted that he was running a fever!! I could've punched him. The last thing Carson needs is to be sick on top of his diabetes. That would make his blood sugar skyrocket. He decided that it was best to take him home and as soon as he left the room everyone washed their hands just to be sure nothing was being contaminated.
After that, class was a breeze. It was 1-1 therapy again for him which was wonderful. They all tag teamed him and made it fun. Patty brought out a Twister mat and they had him spin the spinner and then 'hop' down the color that it landed on to LaQuita who had an iPad for him to use. He would get to answer a question on the iPad and then go back to the start and do it over again. I wonder where Jen was now that I think about it...
After a while they could tell that he was getting bored so they switched it up and had Carson jumping off of a stool. He really only did it one or two times. By then he noticed that I was in the room and would come to me every chance that he got.
When Patty and her student were getting ready to leave LaQuita was sitting on the floor with her iPad and was trying to get Carson to spell answers to questions for her with an app that looks like the magnetic letters that I had on my fridge as a kid. She asked what his dog's name was. He put two. Oh. You have 2 dogs Carson? What color is your dog? Nothing. But then he got funny. He started writing out the numbers, in order. one. two. three. etc. Something I had never seen him do before. Then he decided to show off a little. He would stand at the corner of the mat they were on and he would hop the number of times that he had written. He did this from three all the way to nineteen. Now think about that. That means in total he hopped 304 times. I don't know where he came up with the strength or the energy to do it but he did. I thought Patty was going to fall over from the shock. She has been fighting him all year just to get one lousy jump out of him. Then all of a sudden in one day he knocks out 300+ out of nowhere.
That is probably the thing that I love best about this little guy. When he was a baby and we had Help Me Grow in our house doing physical therapy with him every other week I was specifically told that because of his hypotonia he wouldn't be able to jump. Ever. It was just something that was going to be impossible for him to muster the strength to do because you really need the core muscles and the fact that you're fighting gravity it wasn't something that could be done. He proved them wrong. Just like he's proven so many others (including myself) wrong too.
Tomorrow we have school again and as far as I know he is going to be alone again because his classmate will be out of town. I can't wait to see what he accomplishes tomorrow. Maybe he will show those stairs who's boss.
XX
While I was in the meeting Carson was working with Patty and her student on the stairs. They scattered the numbers around on the landings this time and had him find the numbers in order and bring them down. She said that he went all the way up to the nurse's tower which I was sad that I missed. He is doing reciprocal up and 2 feet per step on the way down with limited help.
Our meeting ran a little over so when I made it down to the classroom Patty, LaQuita and the student were trying to contain Carson and the other little boy while his dad was in his meeting after me. I snuck in the door and made my way to the back of the classroom. Carson had been doing so well without me that I didn't want him to see me and come "running" to me. LaQuita read the boys a book and Carson was really into it. He was pointing to the items in the book that she would ask him. The teachers noticed while LaQuita was reading that the other little boy in the class was coughing and felt warm. When his dad came into the classroom they told him and he admitted that he was running a fever!! I could've punched him. The last thing Carson needs is to be sick on top of his diabetes. That would make his blood sugar skyrocket. He decided that it was best to take him home and as soon as he left the room everyone washed their hands just to be sure nothing was being contaminated.
After that, class was a breeze. It was 1-1 therapy again for him which was wonderful. They all tag teamed him and made it fun. Patty brought out a Twister mat and they had him spin the spinner and then 'hop' down the color that it landed on to LaQuita who had an iPad for him to use. He would get to answer a question on the iPad and then go back to the start and do it over again. I wonder where Jen was now that I think about it...
After a while they could tell that he was getting bored so they switched it up and had Carson jumping off of a stool. He really only did it one or two times. By then he noticed that I was in the room and would come to me every chance that he got.
When Patty and her student were getting ready to leave LaQuita was sitting on the floor with her iPad and was trying to get Carson to spell answers to questions for her with an app that looks like the magnetic letters that I had on my fridge as a kid. She asked what his dog's name was. He put two. Oh. You have 2 dogs Carson? What color is your dog? Nothing. But then he got funny. He started writing out the numbers, in order. one. two. three. etc. Something I had never seen him do before. Then he decided to show off a little. He would stand at the corner of the mat they were on and he would hop the number of times that he had written. He did this from three all the way to nineteen. Now think about that. That means in total he hopped 304 times. I don't know where he came up with the strength or the energy to do it but he did. I thought Patty was going to fall over from the shock. She has been fighting him all year just to get one lousy jump out of him. Then all of a sudden in one day he knocks out 300+ out of nowhere.
That is probably the thing that I love best about this little guy. When he was a baby and we had Help Me Grow in our house doing physical therapy with him every other week I was specifically told that because of his hypotonia he wouldn't be able to jump. Ever. It was just something that was going to be impossible for him to muster the strength to do because you really need the core muscles and the fact that you're fighting gravity it wasn't something that could be done. He proved them wrong. Just like he's proven so many others (including myself) wrong too.
Tomorrow we have school again and as far as I know he is going to be alone again because his classmate will be out of town. I can't wait to see what he accomplishes tomorrow. Maybe he will show those stairs who's boss.
XX
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