Social Security Disability

My son Aaron was diagnosed at age 5. We have had a fairly mild experiences (for ITP). He has had severely low counts at times. He is about to turn 21 and about to lose his father's medical insurance. I have been told he can be on Social Security Disability. He went to college but failed out (not ITP related, we have recently found he might be autistic, lacks executive function). I just found him a job at Walmart working the carts (which in New England is starting to make me nervous). He has been on NPlate for 3-1/2 years and he is basically stable around 100K but he still goes up and down at times significantly. Before NPlate, he was in remission for 5 years and when he came off, he pretty much was at 2K for almost 2 years. They want me to keep him on the NPlate. Worried that if I try to switch insurance, they will deny his treatments. His father and I got divorced and well, he's not really helpful. I can purchase Young Adult through his policy but he is not appearing to be receptive to this even though we are paying for it. He said he can get disability and then he can stay on his insurance for life. Just not sure what experiences and advice I need to start this process. He will be 21 early March. Our hemo is on-board. I tried to get his autism diagnosis but it's hard to find anyone in our area that takes our insurance, ugh! He can work currently while on NPlate but if we stop, he will most likely crash (when we skipped treatments he did) and then he probably couldn't work, back to having lethargic and stomach problems (which are also being treated).
Any advice and experiences on dealing with Social Security would be much appreciated.

SSD is very hard to get for ITP, especially if a treatment brings the count up. These are the guidelines:

Filing for Social Security Disability with a Chronic Thrombocytopenia Diagnosis

The Social Security Administration (SSA) discusses disorders of the blood and circulatory system under Section 7.00 Hematological Disorders, and defines “chronic” as lasting at least three months. You must have been examined at least twice in that three-month period. Chronic Thrombocytopenia, regardless of the cause, is considered under Section 7.06. To meet the requirements of this listing, you must have a platelet count that is repeatedly below 40,000 AND have at least one of the following symptoms: at least one spontaneous hemorrhage which required transfusion within five months prior to filing for disability benefits OR you must have had intracranial bleeding within twelve months prior to filing for disability benefits.

www.disability-benefits-help.org/disabling-conditions/chronic-thrombocytopenia-and-social-security-disability

Once the application process begins, there is a six month waiting period before you find out whether or not you're approved. It definitely helps to have an attorney.

One more thing about SSD: Even after one is approved, there is a one year waiting period before Medicare starts. If you start the process today, you're looking at a year and a half before your son has the insurance.

Currently, under the Affordable Care Act, your son should be eligible to stay on his father's insurance until age 26. Although health insurance should change drastically under the new administration, the age 26 provision is expected to remain in effect.

As I read the language of the ACA publications, your son has a right to this coverage. I would check to see if I am correct -- that your son is eligible to purchase this coverage regardless of whether his father wants him to. The wording I have read says:

Any qualified young adult must be offered all of the benefit packages available to similarly situated individuals who did not lose coverage because of cessation of dependent status. The qualified individual cannot be required to pay more for coverage than those similarly situated individuals.

As regards the risk of making buggy runs in the ice and snow of New England at a Walmart store, could he possibly be switched to another responsibility, at least when his platelets are low? The ADA (Americans with Disabilities Act) might apply here.

Rob16 wrote: Currently, under the Affordable Care Act, your son should be eligible to stay on his father's insurance until age 26. Although health insurance should change drastically under the new administration, the age 26 provision is expected to remain in effect.

As I read the language of the ACA publications, your son has a right to this coverage. I would check to see if I am correct -- that your son is eligible to purchase this coverage regardless of whether his father wants him to. The wording I have read says:

Any qualified young adult must be offered all of the benefit packages available to similarly situated individuals who did not lose coverage because of cessation of dependent status. The qualified individual cannot be required to pay more for coverage than those similarly situated individuals.

As regards the risk of making buggy runs in the ice and snow of New England at a Walmart store, could he possibly be switched to another responsibility, at least when his platelets are low? The ADA (Americans with Disabilities Act) might apply here.

Chiming in regarding the ACA for dependents, yep, he's eligible for coverage up until his 27th birthday. My husband has a family member in dental school who got her insurance through the ACA marketplace up until this December when she turned 27. She is on a completely separate plan from her father, who is on medicare, and only had to provide basic information about her parent when applying. Your son would definitely not have to be on the same plan as the parent.

Good luck with the insurance decisions!

Thanks guys for all your information. I thought it was a long shot but knew that this was the place to come for real life answers. Also thank you for the information that he can stay on his Dad's plan without his approval. At least, I hope so. This is retired military and let's face it, the government doesn't always abide by their own rules. The young adult plan is costly but not compared to other insurances and nothing compared to the NPlate's $24,000/week cost. For now, I think easiest is to just keep him on his Dad's plan. Worried that if he were to do go state or other insurance companies, they can deny this particular treatment. So, for me, easiest plan is Young Adult plan with his father.
Being that he is just becoming an adult (yes, he's almost 21, LOL), this is uncharted territory and I know I will the simplicity of life as a dependent child. I am grateful that NPlate works for him and Prednisone (if needed for emergencies working only since starting NPlate), before he was non responsive to First line treatments.
Thanks for your help. I truly appreciate it.

I received a social security disability for ITP at 61. My doctors prepared extensive documentation showing that job induced stress was triggering the ITP crashes. At the initial filing SS denied. Then I appealed and got it. I had multiple doctors prepare the documentation and letters. I also had other medical issues that combined with ITP supported the SS disability. It will improve his chances of getting SS disability if you can file based on MULTIPLE REASONS. One reason based on what you indicated may be psychological. Assuming your sons gets SS disability he will likely not be able to find any kind of employment because the allowable earnings for receiving SS disability is very low. Not having any employment for the rest of your sons life at his young age will create a large number of issues going forward. My wife and I analyzed the pro and cons of SS disability for me based on our situation and the pros were slightly ahead of the cons. I am still not totally sure that we made the right decision. However this may not be case for a young person. Hope this help.

Thank you for your comments. My son is 23 years old was diagnosed 5 years ago and I applied for Social Security Disability and was denied ( they said the condition would not longer than a year). I reapplied this year due to the fact that his ITP is not in remission, but al;so he now is severely depressed and has been for over a year. He is completely unable to work, and besides the depression he just does not feel well. They recently took him off NPlate after 3 1/2 years and put him on the daily pill, but we were told it will never go into remission.Thank you for your post on Social Security Disability, it give me some hope because If something happens to me he will have nothing.

I have secondary ITP. One of my triggers is stress. I applied for Social Security disability. My hemo supported my applications showing graphically how my counts were down while I was working (30s or less) and up after I left my job (100). My psychologist supported the disability. He documented that the fear of hemorrhage was creating debilitating depression and anxiety. It was. I completed the application and my doctors submitted their portions. The application was denied. I appealed. I won the appeal. I believe that each determination is very subjective but I would certainly try.

Sierra:

What treatments has your son tried? It's odd to say that he will never go into remission because it happens. I went into long-term remission after eight years. Never give up hope! As far as how he feels, has he ever been given a full work-up? Maybe he has something else going on physically that no one thought to look into. Most people with ITP don't feel ill to the point of debilitation on a chronic basis. I'm saying this because maybe there is hope...he shouldn't have to live like that at such a young age. If he would start to feel better, maybe the depression would lift and he could have a normal life.