Parents of a Child with Disabilities - Finding Good Work is HARD!

Hi everyone,

I am wondering if anyone has any ideas to contribute to my current situation.

My husband & I have 1 child (my stepson but we have full custody & the mother is not involved). He is 12 years old & has Spinal Muscular Atrophy Type II, a rare genetic condition that causes his muscles to deteriorate over time. He is in a power wheelchair & needs help with virtually every physical task (mentally he’s beyond his peers - he skipped a grade, he’s in normal non-special Ed. classes & gets all A’s & on the Honor Roll every semester so far). He has a para pro to assist him with physical tasks at school, but outside of school, it’s pretty much just us. We can’t really rely on anyone to help us because of his size (100 lbs) & even though we have a patient lift to use in our bathroom, other people’s houses & even public places can be a challenge with bathroom & accessibility needs. He has doctors’ appointments with uncountable specialists regularly, plus if he gets sick we cannot send him to school. Sickness hits him harder than the average kid because, even though you’d probably never think of this, do you know how many muscles it takes to throw up, sneeze, cough, or blow your own nose? It is a safety concern as well because if he cannot expel mucus in a cough/ sneeze, it could prevent him from breathing. Don’t even get me started on the daycare situation for summers off of school…! Long story short, he requires a LOT of flexibility when it comes to our schedules.

It is really taxing on my husband especially, because of the two of us, I have the “better” job, but it’s standard work hours with some, but not much, flexibility & a boss who still thinks old school: productivity = the amount of time you are in the office. I make pretty good money all considered ($62,500 before taxes), & it is a stable income obviously. When my husband held his last full time job as a supervisor, it was an overwhelming amount of responsibility on me, because it was had to be a split 2nd-3rd shift (we need someone available at all times for our son) so he wasn’t home at night. Evenings with any child aren’t exactly stress free, but couple that with his needs, & I couldn’t handle it. So he started working as an independent contractor because it’s something that he can dictate the schedule & doesn’t have to answer to anyone about what he needs for our little dude. He’s done construction & now has a pretty lucrative gig of detailing semi trucks.

It’s worked for us to a point so far, but I want more for him & for our family. He is a provider, so the idea of a “stay-at-home” dad is not for him, even if we could afford it. But the IC thing is tough too. The income always fluctuates & feels like the bottom will drop out at any time (like it has so many times before), plus it’s impossible to budget for his income. It just feels like he has no way forward, & we have no way upward. We want to get out of debt, we want to save, & travel, & renovate our home to add to our family, & while I make enough to pay the bills, it feels like that’s all it is. We’re just existing.

In a perfect world, he’d make the money & I’d do the stay-at-home mom thing & take care of our boy, but unfortunately, I currently have the stable & higher earnings that we need right now. Does anyone have any suggestions or advice? I’ll even take suggestions on childcare/ help for kids with disabilities. It just feels like we can’t be the only ones out here struggling to make a life around his needs…

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I’'m not sure what state you live in, A, but have you looked at signing your son up for Medicaid and/or Social Security benefits?

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@uasbean17 yes, he is on Medicaid thank goodness, so his insurance needs are covered. He qualifies for SSI disability payments, but my high income makes the payments negligible. Plus, with SSI, you are limited to how much you can have saved/ your total assets cannot exceed $2,000, so now that we are married, I’m sure they will disqualify him from receiving even that. They really have it set up to keep people who depend on SSI from moving upward! We have decided to not count on it as part of our plan moving forward because, obviously, we’d like to be able to save more than $2K.

You can try doing a freelance job to earn a couple of bucks. You can also cook or bake then sell it online.

great that you have him on medicaid! have you spoken to a county social services case manager? based on your description of his disability, he may qualify under the home and community-based services waiver. that can lead to getting programs or providers to help you and your husband assist him physically and free up time for other things. again, this depends on your county and the services in the area.

you should get him on that SSI, no matter how small the amount. there are social security benefits planners who can better advise you on potential options for your situation. not every state has benefits planners, but some help people in multiple states. if you can tell me what state you’re in, I may be able to find one for you.

There is one major way around the asset limit of $2K:


You need to look into an ABLE account. It is an account that lets you save money for your son and he won’t lose his benefits. An ABLE account allows you to exceed the $2,000 limit.

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Look into an ABLE fund for your son. The ABLE fund allows you to save more than the $2,000 limit and he will not lose his benefits.

@mountain.girl @uasbean17 I will definitely look into the ABLE fund, I’d never heard of it before! Thank you!

@uasbean17 I need to speak to his social services case manager for sure… we’ve spoken a couple of times but I need to be more informed before I do so. She was not proactive in suggesting what options are out there for us, so I need to be ready with questions!

I would go on Facebook, and if there is not a group specifically for your son’s disability, find one that is similar, and reach out to them. They will have been through similar circumstances and have good specific answers and ideas that can help you find answers. And you will get a community of support. It has worked for me and my illness, my friends and their children’s disabilities and illnesses. Sometimes it is like being Sherlock Holmes, but some stuff is out there. Years ago United Way helped my sister with resources for my nephew who was very disabled. You might look into that also.

Yes, look into waivered services for your child. It will depend on your state and county. It has been a godsend for us. Also, look into pca services, respite, and ask you county worker what else is available. Talk with parents in your area and find out what is available. Other parents are a fantastic resource. Good luck!

Hi! I’m I’m sorry for what you’re going through. A friend of mine compiled this list awhile ago and it’s very helpful!…inancial-assistance/

I hope it helps! Please share if it does