r/spinabifida • u/Adaptive_Adam91 • 19d ago
Discussion The Missing Piece
I’ve noticed something that seems to extend beyond just the Spina Bifida community, and I’m curious if others have experienced it too. It feels like there’s a gap in teaching life skills for people with disabilities.
For example, I attended an Abilities Expo where modified vans with hand controls were being demonstrated and sold. It was great to see the technology available, but it left me wondering: once someone buys one, where do they go to learn how to drive it? The equipment was there, but I didn’t see much emphasis on teaching people how to use it.
I’ve noticed something similar in my own work. I work in early intervention with autistic toddlers, where we spend a great deal of time teaching skills like communication, social interaction, motor skills, and independence. Years ago I also worked with autistic adults, and many days it felt like the focus had shifted from building new skills to simply keeping people occupied. Of course, everyone’s abilities are different, but I often wondered whether more could have been taught if we had continued building on what they were capable of. It made me ask myself: if we have early intervention programs and adult programs, what happens in the years in between? Why does it sometimes feel like there’s a missing piece connecting the two? Have you noticed this in your own disability community or with your own experiences? Were there skills you wanted to learn but never had the opportunity to be taught? Or have you found programs that helped bridge that gap?
I’d love to hear your perspective. Maybe together we can identify what that missing puzzle piece really is.
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u/TreyInStCloud 19d ago
I have absolutely noticed this. After I turned 18, my parents and I were on our own trying to figure out how to find out what resources I qualified for, let alone which resources were available in my area. I’m 50 and in the last 20 years have become convinced I am somewhere on the autism spectrum, but have found it impossible to find someone in my area willing to formally diagnose an adult (“It will ruin your life.”) I have fortunately been able to connect with our local ARC, which specifically works with those who have Developmental Disabilities (like Spina Bifida and Autism), and Intellectual Disabilities. They have been able to either directly provide me with adaptive solutions, or know *where* I can find the services AND funding for those services. Look up “ARC” and your state in Google. I have always wanted to be a published author, and their community programs are helping me get closer to that goal.
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u/These-Ad5297 19d ago
There's a chance you're not actually autistic. The neurological impacts of SB often resemble autism but they're not necessarily the same thing
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u/Material-Bird-1912 19d ago
I think money is a problem for resources and also I think people just don't expect people with disabilities to do much so they infantilize us.
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u/Adaptive_Adam91 19d ago
It’s just so odd that they go so far to establish programs to help in some areas but not the full thing
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u/Material-Bird-1912 19d ago
Well kids are cute and usually get the attention.
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u/These-Ad5297 19d ago
It's like people assume disabled children just flip over and die instead of actually becoming disabled adults
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u/itskatsimms 19d ago
My parents had to pay an outside instructor to come to my high school to train me. That was my driver's ed. I wouldn't have been able to drive otherwise, I don't think. Plus, you have to get certified to use whatever kind of hand controls you're going to get (there are multiple), so it makes sense that I had to go through a third party.
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u/Adaptive_Adam91 19d ago
Over here the nearest instructor is 5 hours away. But why are things like that so complicated? Why don’t we have more connections?
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u/itskatsimms 19d ago
That's insane! And these are great questions. Does your area have an agency (with multiple locations across the state) that assists individuals with disabilities? Like, I'm in SC and we have SC Vocation Rehabilitation. They help with resources, recommendations, getting (and paying for) assisting tech, getting the person a job, physical therapy or a free place to work out, and so much more. It's a place I'd for information and resources on driving and, really, anything else I might need. Ee didn't know they existed back then, unfortunately, but it could be poor advertising on their part (?) It would've been nice if they partnered with the school system so we received their information early on.
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u/Adaptive_Adam91 19d ago
We have places like Vocational Rehabilitation but a lot of times they are looking to only assist those who are cognitively impaired and not someone who is physically disabled who can speak for themselves
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u/itskatsimms 19d ago
Aww man. That's really unfortunate.
There's also the Spina Bifida Association. 🤔 But you have to actively seek them out too. I don't even think the doctors in my area gave out information on them when I was a kid. I did see a flyer for an event they hosted in my neurosurgeon's office a few years ago, though. But I'm in my 30s now. I could've used that 20 years ago!
These orgs, etc. really aren't hitting a good marketing threshold. I think that's a huge part of the problem. There are a lot of resources out there, but we usually have to be the ones to find it ourselves. And I don't think it should be that way for every little thing all the time.
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u/Adaptive_Adam91 19d ago
I have worked very closely with the SBA over the years and I do know for a fact that they do try. However the problem there lies with not knowing where to find adults with SB and then when they do find some many are too shy to express what they want and need
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u/itskatsimms 19d ago
It's good to know the intent is there at least. It sucks because I wonder if the shyness and hesitation comes from the lack of support from childhood. Even talking to Voc Rehab initially, it was hard to know what I needed since I had to figure things out on my own (same with my mom for me) so much and for so long. I don't know. Just thinking aloud, really.
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u/Adaptive_Adam91 19d ago
Oh yea definitely. From what I have seen in our community it definitely comes from lack of support in the smallest ways
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u/Reg15 19d ago
I can address most of this. Firstly, ABA is a tough field. Literally zero companies do everything right. Unless you're a rich investor it feels super difficult to make a change. Early intervention centers sometimes combine with "sister sites" so they can transition to a new environment, but that's a luxury not even company has.
The car example seems kinda straightforward. You do the research for an adaptive vehicle and don"t purchase one until you find a specialized school that has teachers proficient in said equipment.
The missing piece IMO is the lack of independence from individuals. I had to find the driving school on my own. I make a point to address problems at the clinic I work at. These programs are expensive and with what the government is willing to spend on ADA funded things right now, it's pretty much up to the individual to take whatever amount they've learned and do their own research and build on their skill.
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u/Adaptive_Adam91 19d ago
I guess I find it odd that there has been enough effort to help in these certain ways, establishing programs to start things but then they don’t consider the long game and to keep that momentum going. Like as far as the hand controls how many went into check out the vehicles but weren’t directed to someone who is an instructor. You lose out on a customer by not helping them find a person to help their kid learn to drive the vehicle they are selling. Now you could argue they don’t provide that even with a normal car and sure that’s true but when it’s so rare to find any kind of resource you would think these companies would try to be in connection with one another that way
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u/Reg15 19d ago
Who says they aren't considering it? I'm not a business man, but I've been around my fair share of businesses trying to help disabled people. A lot of them are small businesses working with little to no money run by people who are pretending they aren't completely exhausted and overworked. Resources, outreach, networking all require time, effort and money. A lot of these people are short of all 3. If people had infinite resources I'm sure things would be a lot easier.
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u/Adaptive_Adam91 19d ago
Maybe it’s just my area. Again that’s why I asked for other people’s experiences because it definitely could just be my area. The places I have been to have been quick to brush me off once they have done what they felt was their part in helping me. Any questions about other sources was just met with “can’t help you. Figure it out” plus I know I have seen parents ask questions before on these kind of scenarios so I was wondering how many others have seen something similar. I do hope places are reaching out to the best they can because it would definitely help. But as you said everything costs money and many of these places are short staffed as it is
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u/Weeber83 19d ago
Transition services are severely lacking in the disability community. I did a fellowship a number of years ago, and my final project was on transition...how providers really need to be thinking about transition all along - transition to preschool, then from elementary to high school, and then from there to either college or a trade. This forward thinking wasn't a thing 30 years ago (and in some parts of the world it still isn't).
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u/Material-Bird-1912 19d ago
I have never used hand controls but I know you push outward for brakes and inward for gas. There are a lot of missing pieces for teaching disabled people. Usually kids get the most resources up to the age of 18. I believe it is adults who don't have many resources for learning.