[blake-watson]

I have this problem every time I get a new chair and it seems to get worse every time.

For my main desk at home, I have an adjustable desk (it’s not easy to adjust but it can be done).

There isn’t much that can be done about tables in restaurants and such, but one thing I do is get short armrests. A lot of times it’s the armrests that are in the way. I don’t really need them under my whole arm so I get short ones and have them mounted where they support my elbows and that’s it.

My control is handheld so not in the way.

I mount the Omni display behind me as I don’t really need to see it.

[blake-watson]

Yeah I totally feel this. Sometimes I feel really isolated and/or defeated but other times I feel proud of what I have managed to accomplish. I use the term “accomplish” loosely—an accomplishment to me is anything you are proud of and it need not fit into anyone else’s definition of “accomplishment.”

[blake-watson]

Oh man, that would be freaking awesome. The current limits are extremely oppressive and if it weren’t for ABLE accounts, we would be totally screwed in terms of saving money.

[blake-watson]

Hi peeps. ???? I’m Blake. I have SMA type 2. 36 years old. I work from home as a Software Engineer. I like doing side projects and playing board games and D&D. I have a personal website that has all my stuff: https://blakewatson.com/

-What brought you to the forums? Are you an SMA patient or caregiver?

I searched for SMA on YouTube and came across the SMA News Today channel. ????

-What topics are you interested in discussing or learning more about?

I just enjoy connecting with other adults with SMA. I’m passionate about employment for people with disabilities so career topics are interesting to me. Other topics of interest are dating, assistive tech, and public benefits.

-Are you involved in any other SMA communities or advocacy groups?

I’m in the SMA Discord server. I used to be in the Living With MD group on Facebook but I deleted my account several years ago. I support NMD United monthly.

[blake-watson]

Dragon for Mac was discontinued, although if you can find it on eBay you can still potentially install it.

I mostly use an onscreen keyboard but for a few years now I’ve also used some speech recognition software called Talon. I wrote about on my website. Presently, it’s somewhat technical to setup but I’m hoping that will change in the future.

Speaking in code: hands-free input with Talon

[blake-watson]

I use Ohio’s version (https://www.stableaccount.com/). I think it was the only one available to me at the time because my state, Mississippi, doesn’t have an ABLE account program.

I was happy with it. That said, they recently switched to a different financial institution and the web app is totally different now. I haven’t interacted with it much yet so I can’t say how good or bad it is.

[blake-watson]

I’ve had an ABLE account for a few years now. I really haven’t used it much in terms of withdrawing. I mainly just been saving here and there. Here’s a list of ways you are allowed to use the money straight from the Social Security Administration.

• Qualified disability expenses (QDE) are expenses made for the benefit of the designated beneficiary and related to his or her disability, including, but not limited to:
• Education;
• Housing;
• Transportation;
• Employment training and support;
• Assistive technology and related services;
• Health;
• Prevention and wellness;
• Financial management and administrative services;
• Legal fees;
• Expenses for ABLE account oversight and monitoring;
• Funeral and burial; and,
• Basic living expenses.

While I don’t believe there should be any restrictions on how you can use your own money, I think this is a pretty broad list with plenty of room for interpretation. For example, I’m planning to buy new computer soon. I’m calling that “Assistive technology and related services.” I think you could even construe a new TV to fit under “assistive technology,” especially if you get a smart TV with features that make it easier for us to use.

Also note “but not limited to” in the text above. I’m not a lawyer, but I think you can make a pretty good case for a lot of things being related to quality of life. And while I’m not suggesting to break the rules, I think the oversight is extremely limited (unlike SSI, where they check your bank account balance monthly).