Say you grow up disabled. You have therapists of any color you need (physical, occupational, speech, psychological) and a whole team that includes your parents who come up, every year, with your IEP – Individualized Education Plan. You have bus drivers you know on a first name basis, and a teacher dedicated to you and others like you - a "special education" teacher (though they’ve gone through a few different names in the past couple decades). In high school, you may even gain another teacher to prepare you for a transition to work. Then boom....
Everything stops.
You have to find your own way at a new college, not to mention set up accommodations that had always been done for you. If something isn’t accessible, then tough. You can go to the disability services on campus, but that’s only if your problem is on said campus and even then you’ll likely get the run-around. No clue about the ADA – Americans with Disabilities Act – or your rights on and off campus. You have to deal with DVR, DDD, DSHS, and other acronyms you didn’t know existed (Division of Vocational Rehabilitation, Division of Developmental Disabilities, and Department of Social and Health Services, respectively). Oh, and if you can’t work, SSA – Social Security Administration. But without a job and only drawing SSI, you need help if you want more than a cardboard box (which with a power chair is...well, let’s just say it’d be difficult).
Sound fun yet?
Once in that whole system, it is immensely, insanely difficult to get out of. Not saying it’s impossible, but unless you have an alternate source for health insurance and can get a job that pays a good amount more than SSI benefits, it’s a dead end system. And for myself and millions of others, add on PCA (personal care attendant) bills and the requirement of a more than flexible work schedule (where you would also be able to get health insurance) and you’ve got a quagmire that holds so many millions hostage.