Programs, Progress…and Problems? How Many Services Do We Really Need?

Hello, readers,

President Obama recently signed the ABLE Act. Now, if you’ve read certain posts, you know I am far from his biggest fan. However, I also believe no President is 100% good or bad, so I’ll concede this was a good move, to my knowledge.

The ABLE Act will allow adults with disabilities to open savings accounts and amass up to $10,000 without risking the Social Security benefits they need. They could keep Medicaid and Medicare coverage no matter how much money was in that savings account. This is a huge improvement over the regulations we have now, which state that PWDs can only have $2,000 in any bank account without losing benefits. This traps PWDs in an endless cycle of dependence on the government, on family members, and on loved ones. They are not allowed to earn or keep their own money past a certain point, and because of some other great flaws in our career and financial systems, the jobs they can get usually don’t pay much. In states where the minimum wage is now $15/hr, PWDs continue to work for below minimum wage–but somehow, that’s okay. (????)

So yes, the ABLE Act is a good thing and I support it. However, news articles indicate there are still “hurdles” involved, such as the specific regulations states must set to make financial institutions “able” to do what the new law requires. In other words, who knows when any of this will go into effect? And by the way, part of this law stipulates, PWDs can open only one savings account. What? Do we have stipulations like that for able-bodied persons? Does the federal government think that suddenly, a whole population of undercover spies with disabilities will try to open offshore bank accounts and set up an anarchist society off the coast of Tobago? (Actually, that might not be so bad).

The ABLE Act is not the only program or piece of legislation aimed at persons with disabilities that for whatever reason, has trouble getting off the ground. I’ve seen this happen locally and in my own state too many times to count, and it makes me wonder: how many programs, how many services, do these people need? Are we progressing, or are we creating, to paraphrase, mo’ programs, mo’ problems?

Let me give you an example, using the trajectory of a fictional person’s life, okay?

Sarah is born with a disability. Could be physical, could be intellectual, could be any number or combination of these. Her parents are told all the things she’ll never do, per the norm, from doctors and therapists. Fortunately, her parents don’t buy any of that and get Sarah into an early intervention therapy program as soon as possible. They make sure Sarah’s home isn’t treated like a therapy clinic, and they work with the therapists to make sure Sarah’s goals and tasks are relevant and meaningful. By the time Sarah is three or four, she’s walking, talking, and doing the basic tasks kids her age are expected to do–perhaps not the same way other kids do, or as well as other kids do, but why does that matter?

When Sarah is 5, she’s ready for kindergarten. Problem 1: Because the program they placed her in only serves kids up to school-age, Sarah no longer qualifies. Or in another scenario, maybe Sarah still qualifies, but the program is being streamlined or eliminated because of budget issues, or is changing its rules and regulations so that:
-The therapies Sarah needs are no longer offered
-Mom and Dad can’t pay the insurance/don’t have the right insurance/are asked to use one type of insurance under Obamacare that they don’t want or need (sorry, had to sneak that in there)
-The program requires that Sarah participate in X, Y, and Z activities or studies that Mom and Dad don’t agree with.

Whatever the reason, Mom and Dad say no biggie. Sarah’s old enough for school now and she’ll need an IEP. We’ll just ask the school to set her up with qualified therapists or helpers who can give her what she needs. After all, Sarah is protected under IDEA. Except, some of these problems could occur:
-The school balks, saying they cannot and will not allow these therapies/pay for them
-The school balks because “we’ve never done this before”
-Sarah is given therapy, a one-on-one aide, what have you, but the goals and standards set for Sarah by this person are inappropriate. If Mom and Dad complain, they are told these are the best things the school has to offer and they have no other options. So Mom and Dad have an independent evaluation done, but they continue to fight with the school over what Sarah does or doesn’t need. This may or may not end up in court.

Fast forward a few years. Sarah is 13. She’s exceeded the experts’ expectations, but still needs significant help in a few areas. Maybe she has trouble making friends, so Mom and Dad, a teacher, a therapist, someone, suggests she go into a “buddy program.” Fine, except:
-Sarah isn’t a match for any of the buddies in the program, either because not enough students are interested or Sarah’s disability is deemed too mild, severe, or otherwise unique for a match
-Sarah gets a buddy, but they don’t actually get along. The buddy shows up for monthly dates at McDonald’s but barely talks to Sarah
-The buddy has good intentions but gets overwhelmed with other commitments and drops out of the program
-The program is unexpectedly dismantled, or changed in such a way that Sarah no longer fits in (i.e., if Sarah only has a mild physical disability and the buddy system is now aimed only at kids with intellectual disabilities, what is she gonna do)?

Sarah turns 14 and enters high school. In a year or so, she’s eligible to work at an after-school job. Her location has limited options, but she’s heard about a good employment program for teens with disabilities sponsored by a local restaurant, retail store, whatever. She checks it out because she knows it’s a good starting point. But maybe one of these things happen:
-Sarah is isolated at work or only allowed to work with other employees who have disabilities
-Sarah is required to follow special program rules that don’t apply to other employees
-Sarah decides she wants another job and leaves the first one, like many teens do. The program sees this as noncompliant and says she can no longer participate, meaning she has to struggle to find another job because other employers know she was in “that program” and are suspicious of her.

Fast-forward one more time. Sarah is 17. Let’s assume she’s escaped most of the transitional pitfalls. Mom and Dad believe she can live on her own someday, and both they and Sarah have concrete plans to make that happen. Sarah wants to go to college and Mom and Dad support that. If a special program is needed, it has been thoroughly vetted so Sarah and her parents are assured of her freedom to act and be treated like all the other students. Sarah has friends from school, both with and without disabilities, who enjoy her and want her to be the best person she can be. By now, Sarah is weary of programs, but she agrees to give Vocational Rehabilitation “the old college try,” if you’ll pardon the pun.

What happens next comes straight from my own personal experience.

Problems that could occur and often do, in batches:
-Sarah is given goals that are not meaningful to her
-Sarah is told she does not fit the traditional Voc. Rehab mold, so the counselors “don’t know how” to help–meaning they never call, never email, basically ignore her.
-Sarah’s parents have conflicts with the counselors because the counselors decide Sarah’s case file should be closed after she gets a part-time, minimum-wage job through yet another program–which then ends because the program went defunct.
-Sarah goes through more than 4 counselors in as many years because of employment turnover
-Sarah cannot earn or keep her own money because she has no job, and the programs and services available do not help. She networks as best she can on her own, but because people are skeptical of her abilities, the results are a mixed bag.

Fast-forward 10 years. Sarah lives with Mom and Dad. She has no significant job and no significant funds saved. She hasn’t heard from a Voc. Rehab counselor in 2 years. Any services her parents find are inappropriate for her, such as group homes aimed at low-functioning residents, low-income housing in unsafe neighborhoods, or one-on-one services that come with stipulations such as monthly SSI payments or behavioral monitoring.

Are you mad? I would be, too. Because Sarah, like many other PWDs, showed promise. But the programs took that promise and progress, and twisted it around to try to fit their molds.

Am I saying PWDs and their loved ones should just completely ditch all services meant to help them? That’s not my call. It’s an individual decision you must make based on where you live, what you need, and what you want. What I am saying to you is that I think we’re spending way too much time on programs, and not enough time helping PWDs acclimate to society and feel like a real part of it. Instead of shuffling from service to service, what if PWDs were born into their communities and became community members? And, if programs are absolutely necessary: what if the people running those programs started paying attention to the people they’re trying to serve?

Tune in soon for more on this, as I explore a population woefully underserved by these programs: high-functioning individuals.

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4 thoughts on “Programs, Progress…and Problems? How Many Services Do We Really Need?

  1. Wow, this is a tough situation. I love how you lay all of these things out so it’s easy to visualize the sorts of barriers that exist and problems. This makes me think back to an activity that I heard of at a nearby community college, in which students participated in “blindness awareness day” or something like that. Some students would volunteer to participate and would wear a blindfold all day and have people lead them around to give them an idea of “what it’s like to be blind.” I appreciate the thought, but I can’t help but think that it grossly trivializes the experience of living with a disability. For one, most legally blind persons don’t have someone leading them around all the time, but that is minor. The main issue I saw is that it focuses only on a short-term physical inconvenience and ignores the huge amount of effort and time that PWDs must spend trying to advocate for themselves and trying to be accommodated in an environment where people are disinterested or downright hostile in giving them access to even basic needs like jobs or safety. Being blind isn’t just about having trouble walking to class. It’s about fighting for access to buildings, trying to access technology that will permit you to participate in school, dealing with workplace discrimination, or being denied jobs outright, dealing with transportation issues, etc etc etc.

    Aaanyway, that’s sorta off topic. I am curious about hearing more on this. It seems like a catch 22, because these programs seem like they are often poorly tailored, often defunded, and very impersonal, and certainly no replacement for just allowing PWD’s to integrate into society. But how do we fix this? It seems that funding these programs better would help some, or at least prevent them from just being dissolved due to lack of funds. But there’s got to be other things we can do besides just throwing money at it. I just don’t know what.

    • I don’t know what, either. When you find out, let me know, because I agree. Actually, throwing money at it gets annoying after awhile because really, who knows how that money is being spent? It’s like, “Hold up, I donated half my paycheck so these kids could have real jobs.” “Yeah, we appreciate that, but we figured they’d be better off with more skills training, especially since some are non-compliant.”

      Really???

      Seriously, though, I agree. “Blindness awareness” and stuff like that–I understand the good intentions, but you’re right, the experiences get grossly trivialized. I participated in something similar during elementary school. It was a short program called “What if You Couldn’t,” and the idea was to focus on the disability experience through activities, guest speakers, and so forth. The problem was, as you said, the focus became mild physical inconveniences or, “Don’t make fun of Jimmy just because he’s different.” In some ways, the setup even made having a disability look fun or cool. Despite the fact that disability can and should be lived with, with dignity: having one is neither fun nor cool.

      As I said, though, this was aimed at elementary kids, and was geared toward the whole school. So I guess *some form of* justification exists for presenting disability like this to kindergartners or third-graders or whatever. But what if that program was presented to high-schoolers or even junior high kids? You’d then have to deal with self-advocacy, services that aren’t really services, cruel kids (not just, “Nyah-nyah, Jimmy can’t walk right!”) and so forth. And no school would ever do this, because then they’d have to face up to the truth about disability. Truth is unpopular these days.

      • I think a lot of people don’t want to talk about that because a) they are ignorant of these problems, and b) people want there to be easy and understandable answers, and c) people don’t want to shoulder the responsibility for those answers. A lot of people look at disability and think “wow, that would be really hard, but thank goodness we have Braille now! Isn’t that awesome! Now blind people can be just like everyone else (subtext: if they really want to/try hard enough). How inspiring!” And then pat themselves on the back for being empathetic and move on. They don’t want to address the huge amounts of societal bias and barriers that PWD’s face every day because that’s a complicated, hard-to-fix problem, and sometimes we’re to blame. It’s uncomfortable.

  2. How true is that? I’m amazed–well, not really–at the way able-bodied people tend to think one or two things will completely fix a disability. It’s like those people who say to someone with Tourette’s, “How come you still have tics if you take meds?” It’s ignorance, and it’s annoying.

    Even worse are those people who think that noticing a PWD for two seconds will somehow “make up for” the rest of the time. My local news station did a big story tonight during their sports-cast about how a local high school basketball player with CP got a “special surprise” on Senior Night–he got to play in a game. What had he been doing for all the other games? He’d been the equipment manager. There was no reason that I could see why this boy couldn’t have played in other games, yet he wasn’t allowed to. That is, until a star player “gave up his starting position so Matthew could play.” Plus, the whole stadium got to cheer because he scored two points! Awwwww! Made me SICK.

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