My son was diagnosed with Crohn’s disease and eosinophilic esophagitis at age 14. A year later he was diagnosed with primary sclerosing cholangitis and stage 3 liver disease. He was no longer able to complete traditional highschool due to pain, fatigue, brain fog, itching, etc. and transitioned to Homebound instruction. Eventually, Homebound instruction was a daunting task and he ultimately obtained his GED. He turned 18 years old in Feb. and filed for SSI disability. He was denied disability last week. He wants to go to college but will be unable to both work and attend college. Does anyone have any information about individuals with PSC obtaining disability? I will contact a lawyer next week, but I’m wondering if pursuing the case is futile. If anyone could please reach out to me and let me know their struggles with obtaining disability, It would be greatly appreciated. I thank you for your time in advance.

I am so sorry and also shocked that your son doesn’t qualify for disability. I was just reading today about the new child credit laws where families making up to $150,000 per year and single parents making up to $75,000 per year will be getting $300 per month per child (up to 6 children) for 6 months and then the rest in tax credits. Where is this money coming from and why allowing such big salaried families to receive it, yet not approving your son?

Hello! I worked at a local cancer center and helped people apply for disability. It is very difficult to get for most people even when they are disabled. You have to be denied about 3 times and then after that sometimes you win on appeal. I have seen people come in the ER who don’t no more have a disability than my dog does and don’t know why or how they were approved when people who really do need it don’t get it! Judges look for a person’s ability to work in some capacity even if it’s answering phones and doesn’t have to be the job you used to do.

Thank you so much for your reply. It is frustrating. I just don’t see how he will be able to juggle work and hopefully college with the chronic fatigue and pain. He had planned to drive for a food delivery service a few hours a week to supplement his income if he was approved for disability. I’m afraid that if he does this prior to obtaining disability that it could affect his chances of being approved. Again, thank you for taking the time out of your day to respond to my post.

What does the SSI Office say?
I know most of us got disability SSI amounts based on past $$ input / work put in (having to quite work).
Maybe it is different for disabled children. Did you receive money for work lost to take care of him?
I know there are accounts to house/feed and support special needs. You might pop into one of those facilities and get advice. THEY are certainly aware of ALL PROGRAMS / GRANTS.

Strongly recommend that you involve a reputable attorney with experience in SSD. From what I’ve heard about SSD in general, you pretty much always need legal help with that process.

Hello there I totally get your frustration, my son is now 21 he has UC, small ductPSC, and autonomic dysfunctions. He had applied for disability age 15, his cholinergic urticaria was more horrible then his UC and PSC at the time, by the time we saw the judge ( 2 years later) he was doing much better, and had decided not to go the disability route, he was 17 almost 18. I think its worth a try for your son, they always deny you the first 2 or 3 times, get a lawyer that will make it easier. My sons been going to college out of high school( which he also did from home most days) My son got a 504 plan through his colleges’ disability office. Its a school plan that recognized some students have a disability (physical,medical,mental)that would have them miss alot more school, then a well student, and the plan protects the students, and gives them extra missed days, and extra time for tests.It really helped my son. It is pretty easy process too. My son has been working on his AA degree for 3 years now, and works with me and my Mom cleaning airBandB rental houses(always a bathroom… after we clean it;). He has state insurance and thats the most important thing my son needs to keep… which is a process. My son had a horrible past year into this year,hospitalized a few times for days at a time for his UC, and liver acting up. He couldnt work and we support him, my Mom and I. He was able to finish his 2 classes successfully, but it was so hard…on steroids for 9 months, 3 shingles outbreaks, finally 3months into Remicade and it seems to help alot so far hes been good this month, but this flair has been harder to control it took forever for the steroids to work. We understand. My son, maybe he will have to apply for disability again,and theres nothing wrong with that if he has to, hes a fighter, just like your son…they need all the help they can get. Im not sure this was helpful but we do understand, and are sending you all positive prayers.
Thanks Tina