If you’ve read my “About Me” page, you know I’m a bit of a country music fan (and if you haven’t, well, you know now). A lot of this genre, I don’t like, but there are some artists I enjoy listening to, including Reba McEntire. My grandma listened to her, and so I was exposed to Reba early as a little kid. I also love the fact that she’s a redhead. Anyway, one of her hit songs is “Is There Life Out There,” circa 1993. And it occurs to me, this is a question a lot of adults with disabilities are asking.
No, this is not another post about why PWDs don’t have the same quality of life as the temporarily able-bodied community. This post looks at one of the reasons why they have to struggle for that quality of life. The fact is, many “disability service” agencies buy into the idea that there is not life after age 21.
Think about it. Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to receive a free, appropriate public education in the least restrictive environment possible–until age 22, when they “age out” of the system. Leaving aside the fact that many schools and systems routinely break this law, the age limit means that high school is often the beginning of the end for students with disabilities. At that point, they enter a type of limbo that involves waiting, and waiting, and waiting for more services.
Of course, some of these services are beneficial to some of the population in the disability community. The problem is, not every service is beneficial to everybody, and service options depend heavily on where you live and what agencies are willing to do. According to Disability Scoop writer Kate Giammarise, many PWDs and their families wait years for services. They are placed on lists “5000 people deep,” and the only way a slot opens up on one of those lists is if someone else moves out of state or dies. I mean, really. Imagine being the parent, guardian, friend, or loved one of a PWD, and knowing someone else’s death is the only way your loved one will get what he or she needs. This is so wrong on so many levels.
Additionally, the disability community is noticing–and I agree–that there seems to be an overarching attitude that disability is something you “grow out of.” In other words, when teachers, social workers, and other service providers encounter a child with a disability they are often eager to serve that child. Why? Well, partly because laws geared toward serving children are in place, but also because those children are seen as cute, endearing, and full of potential. Yet, what happens when those same kids grow up? Right. Suddenly they aren’t endearing anymore. They aren’t cute, and for the most part, people give up on their potential. The attitude is, “Well, we spent 18 years on therapy and IEP goals and working toward independence, but the kid just couldn’t hack it, so we’re done.”
Of course, service providers don’t have to be that snarky and obvious about it. Most of the time they’re not. Instead, the attitude becomes, “We’ve done all we know how to; don’t push us anymore.” That’s what I’ve run into every day since I turned 18. My then-Voc Rehab counselor, who didn’t want to be there in the first place, lied to me and my family, saying I did not qualify for services or money if I was going to go to college. In truth, I did qualify to have college completely paid for because of my parents’ income and because college is seen as an avenue for adults with disabilities to eventually get jobs. Thanks to that counselor’s negligence, I have thousands of dollars in student debt I will never be able to pay because I am not allowed to save significant funds.
Finding services of any kind is in fact a crapshoot when you are high-functioning. For example, I have explained to counselors and county workers that I can’t “just move” and take public transportation in lieu of driving, because public transit usually drops you blocks from your destination. You are reading the blog of a person who cannot physically read a map and has visual issues otherwise. Do you know what it was suggested I do in response to this? Get a guard dog. Not that I’m down on guard dogs, but…seriously.
Of course, services after 21 are difficult to locate no matter your functioning level. In the Disability Scoop article I referenced, Kate Giammarise writes about Abby, a woman in her 20s who has autism and an intellectual disability. She has spent most of her life undergoing 50 hours per week in therapy to learn skills most of us do without thinking. Her mother explains, however, that after Abby turned 22, she lost all her services. As a result, she hasn’t been able to keep practicing her skills effectively. She is no longer toilet-trained, must be fed by hand, and works to hold and use a sippy cup. Now, would Abby suddenly become a master at those skills with continued therapy? Who knows–that isn’t the point. The point is, age should not preclude having what you need.
The double standard continues to mystify me. I mean, what if we did the same thing to temporarily able-bodied people? As in, “Oh, you’re 21? Sorry, you can never access your family’s help with house chores again; I don’t care if your paint peels or your toilet explodes. Oh, you’re 35? What are you still doing socializing with 20-somethings?” Of course, society does tend to send those messages. But I would argue they aren’t as enforced as they are for persons with disabilities.
Sometimes, people try to make up for lack of services with “special rewards” or trips. For example, a few years ago, I heard of people with autism in their 20s being taken to Disney World for a celebration of their lives thus far. There is nothing wrong with that; I would personally enjoy going to Disney (um, in February, wearing an overcoat, on a Tuesday). But the way the story was presented, it sounded like a trip to Disney was supposed to be the best time of these people’s lives. Why? Could it be because there were no services where they lived, so after Disney, they would just go back to waiting? Trips, rewards, temporary services–those are great. The services PWDs receive in childhood and adolescence can be good if provided correctly, with a focus on the whole, individual person. But we can’t stop there, because the fact that you had an IEP at age 13 doesn’t mean jack when you’re 26.
Life after 21 is not the big party everybody thinks it is. Life at any age will never be perfect. The key is, temporarily able-bodied people are expected to experience the best parts of their lives after 21. People with disabilities can too, but only if we make the effort to provide what they need. That starts with listening to them and their families or friends, and supporting them consistently throughout life. That doesn’t make PWDs needy and dependent–it proves they are ready for interdependence. Let’s make life after 21 happen–whether it includes Disney World or not.