People with a spinal cord injury, spina bifida, and other disabilities face huge hurdles in their transition to adulthood that most others don’t.
Still, there are proven strategies that anyone with a disability can use to live more independently.
During a recent webinar (which I also cover here), hosted by the Spina Bifida Association (SBA), neuropsychologist Jennifer Turek Queally noted that almost everyone finds it difficult to leave their homes, live on their own, hold down a job or attend college, and otherwise become an autonomous adult.
But people with disabilities have to deal with a lot more. For example, they:
Have more complex medical histories and much higher medical costs
May experience learning challenges and/or have trouble making rapid decisions
May need support services from their college, community, or both
Have medical and mobility needs that affect their social lives.
All of this makes the typical challenges of adulthood, such as managing new tasks, new routines, and less structured schedules, much more difficult.
Plus, the support system people came to rely on — parents, friends, doctors — could be mostly or entirely gone once they leave home. That means things can go downhill quickly, even to the point of having a medical emergency.
Get a Thorough Assessment
All of that said, many people with physical disabilities can beat the odds and become successful, independent adults.
The process starts before you leave home. At about age 16, have a thorough neuropsychological assessment. This should, among other things:
Identify learning supports you may need for school or a job (Note that a recent assessment is often required to receive disability services in college)
Evaluate your ability to make major and minor decisions
Identify key areas where you have particular challenges
Teach you necessary life skills.
It’s very important to think about these things before the assessment and be totally honest with the neuropsychologist about your needs, strengths, and weaknesses.
Learn to Self-Advocate
A good assessment will also help teach you to properly advocate for yourself. Although learning to do this can be a challenging, ongoing process, it’s something you must do to make it on your own.
“One of the big transitions to adulthood is starting to do your own self-advocacy,” Queally says. “It’s a skill that needs to be practiced.”
Learning to advocate for your own needs is easier said than done, especially if you’ve been used to someone doing it for you. If you don’t know where to begin, start with these steps.
Know Your Rights
Know your rights under the Americans With Disabilities Act or whatever laws (if any) protect the rights of people with disabilities in your country or local area. If you don’t know the accommodations you’re entitled to, you can’t ask for them.
In most cases, a disability advocate can advise you about particular situations where you believe your rights are being violated in some way. (In the U.S., your state’s office of disability rights is a good place to start.) Some situations may require advice from an attorney.
Find Good Medical Care
Being a good self-advocate also involves finding competent doctors and other medical professionals after you leave home — ones who have deep expertise in addressing your physical challenges and have your best interest at heart.
These people will not just materialize out of thin air. You have to find them, so do your research. Look at “best doctor” lists, ask people at your college’s office of disability services if your a student, and ask any other people with disabilities you’re acquainted with.
Know Your Limitations and Weaknesses
Another important part of being an effective self-advocate is to know your limitations and weaknesses. Don’t wait for problems to crop up; develop action plans in advance.
For example, Queally says if you have problems with attention:
Carefully organize information and supplies
Don’t multitask unless it’s absolutely necessary
Find times of day when it’s easiest for you to focus
Some people with disabilities find it hard to process information and have challenges with so-called “executive function,” a set of mental skills that include remembering things, integrating information, thinking flexibly, and exhibiting self-control. These skills can easily decline under stress, such as if you have a challenging medical condition.
Think about what to do if something you hope never will happen actually does happen, so you’re prepared
Develop broad strategies for various situations, like finding lost items.
Finally, people with spina bifida or those who have had lots of surgeries often find it hard to process things quickly. This can affect your ability to, for example, absorb information during a medical visit.
Practice strategies for slowing things down, like asking people to speak slower or repeat information
Have a list of medical diagnoses in a Google doc and photos on your phone of your medications and supplies
Set up automatic logins for medical portals using a password manager, so you can set strong passwords that you don’t have to remember.
The overall point here is to identify your particular challenges and come up with plans to address them before they blow up into major problems.
I’m eternally grateful to my parents for teaching me the value of hard work and for showing me how to advocate for myself. These and other skills that I learned growing up, along with the fact that I attended a highly accessible college, went a long way toward smoothing my transition to adulthood.
That’s not to say it was easy. Far from it. I made plenty of mistakes — some that any young adult might make, and others that related to my disability.
For example, I didn’t always take care of my physical needs the way I should have, resulting in pressure injuries (which fortunately healed) and other complications. I wasn’t as proactive as I should have been in finding suitable doctors. I didn’t exercise enough when I was a freshman and gained some weight, which made it harder to walk with crutches.
Still, I did pretty well. If you’re a young adult about to head off into the world on your own, you can make a successful transition, too.
For more valuable insights into living independently as an adult, see my second post on this webinar. TwP