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Filing for disability for 18 year old- any experience?


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I made the hard decision yesterday that my son may need to go forward with applying for disability and medicade. I know he is sick psychically and mentally but I am near the end of my rope in dealing with his behaviors. Cunningham results won't be in for weeks. He is refusing to treat Lyme and last night he talked with his ILADS doc and will take 5 meds and that is it. I'm so worried that he will regress even more. It is like he can't think or process what he needs to do to get better. With depression, he sometimes just doesn't care about tomorrow. I feel stuck! Lyme was hard enough with minor psych issues. Now I am overwhelmed by just psych issues.

Does anyone have any advice or suggestions for me? My though is to start with a disability lawyer because he is so complicated and cannot wait two years financially to get help. I don't know when or how he would ever work.

Thanks!

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What state do you live in? Every state is different. In MA you need a doctor to send notes and fill out forms. It's very difficult to get awarded and you have to prove many hospitalizations and Inability to work. I understand other states are easy as pie so it really depends. I would recommend finding an advocacy group to help you through the system. There are free ones and they can be very helpful. I would start with a phone call to medicade to get all of the forms. But make sure you get help filling them out or your application may just sit on someone's desk for months. For example, in MA they ask for the head of household info. Most "moms" would fill out dads info if they are the bread winner. When in fact, they are asking for the person who is available by phone during business hours and whom they will be dealing with. If Dad works and can't pick up the phone, or doesn't have the info right in front of him, they will not speak to anyone other than "head of the house". Now I'm not implying that moms can't be head of the house or that dads wouldn't have the info, I'm just giving you examples of how tricky these applications can be. A social worker in a medicad clinic can also be very helpful. In my office, I have helped many full out these applications. If you were in MA I could help.

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It's not so hard if you can find so done to help you with the paperwork. Just know that if you are looking for health insurance it will be secondary to what he is on now, and they may charge a monthly fee for it as well. But it might be worthwhile as they do cover deductibles and other covered out of pocket expenses. Although if he does qualify for disability there may be a waiver for premiums. Usually you can get both applications sent to you from the Medicaid office give them a call!

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Thanks. I've spoken with a lawyer and a private advocate and have received good info. The advocate will use son's income of 0 with a slideing fee scale. She knows a lot about county programs. My son can be on my insurance until 26. He will apply for nmedicade though to help with copays etc. hard to imagine him living with us much longer and even harder to think of him living on his own. He literally is falling through the cracks.

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ktdommer...I know this doesn't answer your question about disability, but I am wondering...given that he is now an adult, and probably has been under treatment for awhile, if maybe an alternative treatment might be considered. Both my children are now adults (18 and 21), and they have been treated for many, many years...my 18 year old had sudden onset at 8 years old, but it still took us 4 years to get dx, and then another year to start treatment. My 21 year old was dx with Asperger's, and then we found out that he had PANS when he was 15. Both have taken tons of things, both have had PEX and multiple IVIG's (that one they always felt tremendously better afterwards, but it wouldn't last, because it turns out we were still dealing with lyme and virtually all co-infections.) Now, they're tired out of all the pills (we were doing upwards of 50 per day.)

 

We are now doing alternative treatments only. My 21 year old works with an Ayurvedic doctor, who has been fixing his gut. He does great now, as long as he doesn't go overboard on all the stuff he shouldn't be eating. Easier said than done, but he has improved a lot. She uses indian spices, herbs and diet, and they are very easy to take (drops in water.) He is now "dabbling" in homeopathy...not going full-on, because there is some major herxing that can happen, and he can't handle that away at school. My 18 year old and I (I turned out to have all the same things) are doing only homeopathy...a form called aperture prescribing. It only requires us to take pillules (little sugar coated pills), and is customized to us. I never really believed it was anything that would work, but it sure has packed a punch for us. We do it by skype, and the price is even quite reasonable.

 

Like I said, we were all very tired of the number of pills and such we were taking, and were ready to try something different. We had tried lots and lots of standard medical stuff, and yes it helped, but just wasn't truly giving us our lives back. And, it was so much to take (and the cost was so much.)

 

I think, particularly for older children, and those who have been getting treated a long time, considering alternative treatment may be something to consider.

 

BTW, we have been dx with CVID, lyme, bartonella, babesia, erlichiosis, mycoP, strep, and I suspect there also may have been mitochondrial disorder. My older son is also dx with Asperger's, but after his second IVIG, his social skills jumped 7 years overnight, so I'm now certain it was all related. He was even thought to possibly have bipolar, but I'm sure now it was all the lyme and co-infections. He also had multiple stomach infections, and even had laparscopic fundoplicationat 6 years old...they never bothered to find out WHY he almost burned a hole in his esophagus...just fixed the problem surgically, but it kept on going, because we didn't know he had all those infections. And, he had open heart surgery to replace his aortic valve this past summer...congenital problem, but I suspect worsened by the bartonealla we didn't know he still had.

 

So, when I say that alternative treatments have helped, I mean they have even helped all those differnt things. And, they may make it easier for your son to be compliant.

 

Good luck with whichever way you choose to go.

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I had to go through the process for myself, so I know it very well.

 

You do need a disability lawyer, they will deny you no matter what and in florida after 3 denials that's when the court date can be set. The lawyer's office will handle all the paper work and contacting doctors, it cannot be done without a lawyer as I tried. You merely have to keep the doctor updated with anything new, send him/her new diagnosis, papers, etc. From there, they should handle everything.

 

However, getting disability is very difficult. Very. You need diagnoses that "prove" before a court of law that he cannot work. Even with all my diagnoses and 4 doctors saying I was completely disabled, they gave me a hard time. I don't know that you can simply say he has "lyme" and get by on that, you need more imo.

 

Also, he will have to testify himself. I had to even as sick as I am. It was 3 hours of being grilled and there was a man there who oversees jobs and every time a health problem was presented with documentation and I had described it, he'd go through the list of jobs I could or could not do. Eventually he had narrowed it down to 2 jobs I could "work" and one was looking at a security camera and one was pressing a button for trucks to enter.

 

Then the question is why can't you do these 2 jobs? It came down to my bladder getting me up constantly and the fact that most days I spend in bed, and there is no schedule to when I will feel "okay" versus not being able to get out of bed.........

 

My lawyer was there, and helped me before-hand. Florida and Alabama are the most difficult states I am told so perhaps that's why my experience was like this.

You just need proof b/c a judge will be reviewing everything. And you need a doctor preferably doctors supporting this claim.

 

It would be so much easier to not go to court and I have seen this happen but not with young people who haven't worked like myself. My friend who has ITP and was crippled in a motorcycle accident was denied for years and eventually had to go to court as well and testify. I am appalled by this process and that they can't simply review things and see how sick a person is, then again they don't "believe" in chronic fatigue syndrome or fibromyalgia. It's all very very frustrating. Ask around and get the best lawyer.

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  • 2 weeks later...

Thanks for sharing Ophelia.

My son could not push a button consistently and with accuracy. He would be sleeping most the time. Not sure how he would even get there since he shouldn't be driving with neuro issues. I would think heavy focusing in an X-ray machine would give him migraines. We have tried to think of everything. New neuropsych testing shows huge memory deficits and processing speed is low.

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Im in Pennsylvania, and maybe that is why, or maybe it was just sheer luck, but they just gave it to me. My sister and mother applied for it. I was hospitalized twice (which didn't help at all). They finally decided I had schizophrenia (even though none of the schizophrenia meds helped and the doctor finally listened to me and treated me for OCD. I only get about $500 a month, but it's the health insurance I and my family were worried about. I didn't have to go to court, I had a phone interview and I think the social worker and the doctors took care of the whole process. There may be aspects of it that I am unaware of, since I was in the hospital, but that is what I know about the process. I have recently started working and am thinking about discontinuing the disability, but I am afraid I won't be able to get health insurance to cover me or that I will start feeling unwell again and will be unable to work. I need to talk to the Social Security people to see what happens in the event that you want to go back to work - do they give you a trial period to see if you are able to work?

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