Posts by mistybear56

Get Ben Affleck to play an accountant and double-check this...

Something smells fishy in this country...

Quickly, Blackie: Who was Wulfil?

@Anderlon: Good eye for symmetry. 😉

What happened to Blackie? Didn't things fall apart with The Destroyer? That's a shame... 😢

Which probationary period was it that you failed? The fourth one? The fifth?...

Looks like you moved on pretty fast. That's how a real climber handles it—just set your sights on the boss... 👍

You know what needs to be done... 😉

@Anderlon: You wouldn't believe how many crappy computers with weak processors and terrible graphics cards are hitting the server...

Nancy Richardson75 said:Could anyone recommend a good hematologist in Miami other than Dr. Madunic? I heard she’s out sick right now, so I can't see her...
Thanks

Victor Blaslov was excellent in my experience. It was regarding leukocytosis and erythrocytosis with suspicion of myeloproliferative diseases...

Kyle Reed30 said:placidrider48

All right, great. I can get started now.
I have to hide my condition. My whole life is too complicated to explain in one go. Right now, I’m forced to stay quiet because my diagnosis isn't even officially in the system at my doctor's office yet. As far as the medical records show, I'm perfectly healthy. It isn't until I finish my remaining tests, get everything logged into the system, and complete a formal disability assessment that I can actually tell an employer what's going on. If I disclose a chronic illness to a hiring manager right now, they won't hire me. Besides, since there's no official paperwork yet, I'd just look like I was making excuses. My strategy is to apply as a healthy person. Sure, it's a losing game—I often end up getting let go after a few weeks once they realize I can't meet their standards—but it beats having zero income. I have to play it this way. First, I get the paperwork in order so the diagnosis is real, then I can deal with the employers.

What happens if someone gets fired from one of those specialized roles meant for people with disabilities, but they don't actually have a documented disability themselves and are left with zero income? How does anyone even begin to help someone in that position?

This is going to be a complicated question. Apologies if this falls outside the realm of legal expertise:

I’ve lived with this disability for as long as I can remember—over twenty years now. It wasn't until this year that I finally received an official diagnosis. Even now, I'm still stuck in the bureaucratic loop, waiting on five different specialists to review my case and sign off on the ICD classification. Does this actually change anything? My specialist told me it’s a massive issue because, on paper—in my medical records—it looks like I’ve been perfectly healthy since birth. But that’s a lie; nothing is actually fine. Could this become a major roadblock when it comes to getting an expert assessment?
The disease is highly specific. Here in the States, we lack the specialized expertise needed to handle it properly. It’s largely misunderstood. For a long time, it wasn't even included in the ICD, and even now, the terminology keeps shifting. The diagnostic tests are just as unstable; they change constantly because they aren't precise enough yet. In most developed nations, this is officially recognized as a legitimate disability.

If the ICD recognizes the condition, there shouldn't be any reason it isn't recognized here in the States. The issue usually lies with how our laws handle disability rights and whether the system has caught up to recognize the condition as a cause for disability.

If I were you, I'd have a serious talk with a neurologist. Ask them how much longer I can realistically work and what kinds of roles would be sustainable...

I'd also ask psychologists, educators, or vocational specialists for a full observation based on the diagnosis. They should focus on sensory, motor, intellectual, communication, emotional, and social functioning, along with individual strengths. That could serve as the foundation for retraining, job accommodations, or filing for a disability assessment.

Also, if your parents know any business owners, maybe they could ask if you could handle things like sorting mail, rerouting calls, or scheduling meetings. You could work part-time, too. Your employer could cover half your pay, and the Social Security Administration could cover the rest. From what I can see, you're more than capable of doing that kind of work...

Kyle Reed30 said:Great! I also believe I am capable of making my own decisions and representing my own interests. In fact, I've made more mature and wiser decisions than my healthy parents ever have.

DO YOU REALLY HAVE TO LOSE YOUR CAPACITY TO WORK JUST TO QUALIFY FOR PERSONAL DISABILITY?

Is that minimum guaranteed benefit basically social welfare? Like what people on welfare or certain dependents receive...

I will definitely consult with doctors. Obviously, I won't be happy about potentially living on the edge for the rest of my life, but it would still be better than where I am now. I've tried everything, and everywhere I go, I just get rejected. Even a specialist told me straight up that I'm sick, and that wherever I work, I'll struggle and fail—that I should just go through the official evaluation process.
Yes, I would really love to have those kinds of labor rights for people with disabilities.

I don't think you need to lose your legal capacity to receive disability benefits. Why? It's not like someone with paraplegia is automatically considered mentally incompetent. As for that "minimum guaranteed benefit," that's usually for people with zero income who can't cover basic living costs. Beyond that, I'm not sure... https://www.socialservices.gov/services

Kyle Reed30 said:I don't have any kind of psychiatric disability. My condition falls under neurology.
Yeah, my family is problematic, but I’m not. They’ve always been experts at twisting the facts about my illness just to serve themselves. When I say they benefit, I mean they hide the reality of my condition and label me as lazy or irresponsible just to chase the unfulfilled dreams they weren't capable of achieving when they were healthy. It’s a way for them to pretend my successes belong to them. They would gladly humiliate their own child just for five minutes of glory.

My bad, sorry for the mistake. I assumed that because the illness impacts cognitive function. I wasn't calling you problematic. I was just trying to look at the whole picture. Honestly, the only person who could really give you solid advice is someone within the system you can talk to informally...

They won't strip you of your ability to work, so there's nothing to fear there. You need to advocate for yourself and let go of that fear regarding your parents. I looked into something called minimum guaranteed benefits through the Department of Social Services. At full amount, it’s about $12 a month. Maybe try securing something like that before looking into formal disability status. Talk to your neurologist about what kind of jobs would fit your education and interests. You also have to consider if you're okay with living on the edge for the rest of your life because of everything that happened. You have every right to fight for a happy, fulfilling life... Ask the IRS for a list of employers who get tax incentives for hiring people with disabilities and send out some open applications. You're also entitled to reduced hours and workplace accommodations. Under current regulations, employers have to prioritize hiring people with disabilities and meet specific quotas based on their staff size, otherwise they face penalties. Check with the Department of Social Services to see if you can keep your disability benefits if you do find a job...

@Kyle Reed30: Here’s a quick look at the regulations regarding social, retirement, and health insurance for people with disabilities:

Kyle Reed30 said:Hey, hi!
I'm really glad you stepped up as an expert here. Can we move this to private messages?

I know that website exists; I thought about calling them once too, but I don't think my condition is rare so much as it is misunderstood.
Unfortunately, I don't have any close people I can trust given my current living situation.
Rehabilitation isn't an option for my condition. And yeah, I'd much rather have a job tailored to my disability than just collect disability checks. How would you even go about getting a guardian?? It would probably end up being my parents, which is a disaster for me. My parents aren't good people; I've dealt with all kinds of abuse from them my entire life, and they always flip the script—making themselves the victims and me the villain. They managed to turn everyone on their side, and I never had the courage to defend myself or tell the truth. That's why I have zero support. Honestly, nobody even knows I'm sick, and even if they did, no one would believe me after I spent 20 years staying silent and taking it. I've been manipulated and stripped of my rights my whole life.

Oh, by the way, my specialist thinks the best path forward is career adjustment—retraining for a support role suited for someone with my disability.

What do you do for a living? Sorry for being so blunt, but I need to know how much you can actually help me.

Thanks!

I probably can't help you much since I only worked as a teacher's assistant for students with Down's syndrome, which isn't my professional field.

Regardless of whether the illness is rare or severe, you have to reach out to someone for help. You have to start somewhere...

You could also check in with disability advocacy groups.

During my training for assistants, I did learn a bit about legal capacity.

To put it simply, capacity can be partially or fully revoked based on petitions filed with the court by a guardian, a spouse, or the Department of Social Services. This happens if you can't make decisions in your own best interest, or if your decisions end up harming yourself or others.

Official info here:

For questions like yours, it might be worth contacting a Law School; sometimes 4th and 5th-year law students offer free legal aid.

Based on what you're saying, it would be wise to build a solid support network—people like your primary care doctor, specialists, psychologists, educators, special ed experts, social workers, and someone in the legal field.

Those people need to have your best interests at heart first. They need to be professional, open, honest, wise, conscientious, empathetic, and brave.

If I were you, I'd research everything thoroughly first, then weigh what works best for me in the long run...

Also, you should look into what happens to your inheritance down the road if you receive permanent disability benefits. With certain life-care contracts, your heirs could lose their inheritance rights.

Kyle Reed30 said:Can someone explain what kind of rights people have if they have been born with a disability involving a developmental disorder, rather than not being disabled due to a workplace injury or a car accident??

Hey there.

Maybe this site could help you out:

http://www.rarediseases.org/rights-catalog/

If I were you, I'd definitely call the number at the bottom of that page. Just ask about all your options and what the actual consequences might be...

If it feels overwhelming to do alone, maybe ask someone close you trust to help. Just make sure the conversation is open, and don't be afraid to ask for clarification whenever you need it...

Your specialist probably understands your situation well—how long you've been in treatment, the specific physical or psychosocial challenges you face, your family history, and your financial situation...

Since I used to work in special education, I know firsthand that losing your legal capacity and being assigned a guardian isn't usually in your best interest. First, if you improve later on, it’s hard to get that independence back. Second, a guardian might be someone you have a difficult relationship with. Third, you could end up being manipulated or stripped of your rights...

Just be careful with your next steps...

If money is the main issue, the Department of Social Services likely offers other types of long-term assistance. It's worth looking into...

People with developmental disabilities can definitely hold supportive roles. For example, working as an assistant server, cook, or pastry chef. With good social adjustment at work, many do really well, and employers are often very happy with them...

You might also want to check with the IRS or local vocational services for counseling or psychological evaluations, and see if there are any retraining programs available...

That's just what comes to mind right now. If I think of anything else, I'll let you know...

Good luck!