Almost There…

This week I attended a 2-day summit about benefits for people with disabilities. My disgust with the Social Security “system” has been well documented and fixing it is one of my life missions. This isn’t just about me trying to achieve financial independence; I want to be that voice for all people in the same situation. If the laws aren’t right for ALL of us, then they aren’t right! In The Art of War, Sun Tzu says we should know our enemies, so this summit was my opportunity to learn more about options for people with disabilities who want to work.

Honestly, I do feel better about the system after this meeting. Of course, they have a long way to go, but at least they are heading in the right direction. It is now possible in NC to work and keep Medicaid, but the resource limit is still way too low. For some people, it is better to stay on SSDI and just work up to the current limit instead of the Medicaid buy-in program. It’s complicated and cannot be explained in a 600-word blog, but we do have some options. At the meeting, we got a CD of every presentation. I will try to put them on our hockey website for everyone to see next week.

Of course, even if the laws become acceptable, it won’t make a difference if we don’t change the culture and how people perceive those of us who receive benefits. Anyone who is “different” knows that discrimination will always exist in the world because of ignorant people, but it will never get better if those people work in benefits offices.

At the meeting there was a discussion about a section of the Social Security law, which allows someone on SSI to make $32,000 a year and remain on Medicaid. One member of the audience asked, “If someone is making that much, why do they need Medicaid?” Lucky for him, he was far away from me! Thankfully, the organizers answered him very quickly that some people have high medical expenses.

Here’s my issue…First, counselors of any kind have no right to form an opinion of how much a person should be allowed to make because they do not live in their shoes. As a state employee, I can pretty much guarantee he makes at least $32,000 a year and he receives all the benefits, such as…wait-for-it…HEALTH INSURANCE! Do we go through his financial records to make sure he only uses money for medical needs, food, or shelter? Is he allowed to buy himself a new hat he likes or does he have to get permission for an unauthorized expense? If people with disabilities have to live under such scrutiny, wouldn’t able-bodied people have to do the same if everything was “equal?”

I would have loved to publicly humiliate the guy by breaking down his income, but I behaved myself. However, I will show how little $32,000 is. That equates to approximately $2700 a month; a decent salary, but when you have major health expenses, it’s nothing. If I had no health coverage or Medicaid, I would be looking at $1000 a month for my ventilator and maintenance, $1000 a month for a nursing assistant, and who knows how much in medicine or hospital visits. With those expenses, I am already down to $700 and I haven’t even paid rent, electricity, or ate! Let’s not forget taxes are taken out of the check. Social Security measures everything by gross pay, not net or take-home pay. See why I say the earning limits are still way too low?

Employees in this industry (Social Security and Vocational Rehabilitation) should understand what we deal with on a daily basis. They should NEVER look at a client thinking, “Well if he makes as much as I do and I don’t get benefits, why should he?” Trust me, if we could trade places with you, we would!

Changing the laws are great, but the real change has to start with the lawmakers and those employees who enforce the rules. One day we’ll get there!

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