Monthly Archives: February 2015

Will the Real Persons with Disabilities Please Identify Themselves?

Hello readers,

If you’ve been with us for any length of time, you know we talk a lot about phenomena and people who are harmful to people with disabilities. You know the usual lineup:

-Bigots
-“Experts” with criminally low expectations
-Media representatives who use PWDs for their own gain
-“Disabled only” phenomena that segregate rather than creating realistic opportunities for life experiences
-The general unwillingness to think beyond the usual and to admit “conventional wisdom” regarding disabilities often does not work

But did you know there is another harmful group of people out there? It’s the people who fake or claim disabilities and reap benefits that they don’t need, thus taking benefits and modifications away from people who have legit disabilities.

Now, before we go any further, I want to clear up who I am not talking about. I am not talking about:

-Obese individuals. Their weight is often disabling, if not a classical disability, and gastric bypass will not “fix” it. I’ve seen some of the complications of gastric bypass and they are nothing to sneeze at.
-Individuals with temporary disabilities from work-related and other injuries
-People with psychiatric conditions who do not have visible “classical” disabilities but do struggle to function in the typical world and should be able to access help to improve that–even if the improvements are incremental or slow in coming.
-People with mild disabilities/invisible ones. Been there, people. Done that. Felt like a government leech. Don’t even go there with me.

So who am I talking about? I am talking about the people who take unfair advantage of disability-related benefits, monetary and otherwise, after they actually need them. This is the person who injured his back at work 6 months ago and got a clean bill of health from the doctor, but continues to claim disability because he decided hey, I hate my job. He now siphons disability benefits while down the street, neighbors struggle to provide for a grown child with severe cognitive disabilities.

I’m talking about the person who prefers to live on welfare when he or she can work and who claims “there are no jobs,” or acts like he or she is too good for a menial position or entry-level work. He or she makes up a disability and draws benefits that are twice as much as what his or her neighbor with multiple sclerosis receives.

Or how about the person who goes to work or school, claims he or she needs modifications, never does the proper paperwork, and files a false EEOC claim or other lawsuit? Meanwhile, someone who has been discriminated against due to a real disability gets his or her claim thrown out, inspiring news outlets to report that “claims of disability discrimination are down.” I wonder how true that is–as in, is it true only because PWDs cannot or will not speak up for themselves?

How about the student whose parents insist on modifications when a disability has not been diagnosed or proven, or the young adult who insists on inappropriate modifications (i.e., a student with CP who reads and writes on an average-to-gifted level, but insists on having tests prompts read to her and scribed for her just so she won’t have to put forth the effort)?

Yes, this does happen. And yes, because every person and every disability is different, it can be difficult to figure out who needs what and when or where. But most people who are trying to take advantage of the system will eventually give themselves away, and I’m sending out a message to them now: stop it. I mean it: STOP NOW. Because of your behavior, people with legit disabilities must fight even harder to get the help to which they are entitled. For example, in my hometown, PWDs will soon be required to use “regular buses with wheelchair lifts” rather than paratransit. Now, you guys know I’m not a huge fan of paratransit, but some people do need it and should not have it taken from them. Yet, because “paratransit costs money” (and by the way, I’m also sick of that excuse), and because it’s not always easy to tell who needs it, that is what will happen. PWDs will also be required to fill out paperwork to “prove” they are disabled.

To quote Willis Jackson: Say what?

Okay, I get it. Our world isn’t perfect. Paperwork is part of that fallout. But seriously, don’t PWDs have enough to deal with, without constantly proving their disabilities to the rest of us? Let me get a little personal: I say yes, because I have to do it all the time. I went through long evaluations to “prove” I needed modifications in college. I let SSI quiz me every year about things that are none of their business, just so I can get paid pocket change. It reminds me I am different. It’s awkward and uncomfortable and it makes me feel like the one thing I spend the rest of my life telling myself I am not. It makes me feel like less.

So, to those who are tempted to fake disabilities: rethink that. We are real. We have needs and wants and one of those is to be seen as equal to you. But that won’t happen if we don’t have the modifications that level the playing field. And THAT won’t happen if modifications are scrutinized or taken away from us because you abuse the system.

To those who have real disabilities: Persevere. Just because a few people abuse the system, it doesn’t mean you should be lumped into their group. Keep pushing for what you need, with help where necessary. Let those around you know, you are real, you are worthy, and you’re not going anywhere.

*Note: High-functioning post still in the works; coming soon.

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Fifteen Minutes of Fame: Why PWDs Deserve More Than That

Hi readers,

Today you get a bonus round. Normally I plan these, at least to an extent, because I know I have more topics on hand than will fit in a month. But sometimes something happens that demands a post because it evokes strong emotions in me. This is one of those times.

Last night, my family and I were watching the local news when the sports report came on. Not being a sports fan, I was pretty tuned out until I heard about an athlete at a local high school getting a big surprise on Senior Night. I remember how good it felt to be a high school senior, so I paid more attention. That’s when I found out the story was about a guy named Matthew who has CP. Okay, now you’ve got my attention, I thought. What happened on Senior Night that was such a big surprise?

It turns out Matthew is a member of his school’s basketball team. I was hoping to hear he was a regular player, but that hope started dying when an able-bodied player was quoted, “He’s here supporting us at every game.” Okay–team members support each other because that’s part of participation, but I wondered if that meant Matthew didn’t really get to play. I was right: he is the equipment manager. That is, until Senior Night. That’s when a star player “gave up his starting position so Matthew could play in the game.” Viewers then saw footage of Matthew putting on his jersey, coming out with the team, and scoring two points, for which the entire stadium cheered like crazy.

Inspiring story, right? Great kids, right?

Right. And it made me sick.

If you’re familiar with this blog, you know one big reason why: inspiration discrimination. For a quick refresher course, this is what happens when a PWD is placed in an “inspirational” role because of his or her disability and given fifteen minutes of fame. The kicker is, if you take away the disability, there’s no story and no reason to pay attention to the PWD. For example: an able-bodied basketball player scores two points in the Senior Night game? Whatever. Probably more impressive if he’s a senior who’s also being wooed by a prestigious college, but not necessarily the biggest deal on the planet. Basketball player with cerebral palsy does the same thing? “Oooh! Aaaaah! How INSPIRING! Get the newspaper down here!” In other words, if the PWD is not doing something “inspirational,” something that pleases the TAB community, then he or she isn’t worth the time, the TV slot, the space in the newspaper.

But there are a couple other reasons I have a problem with this story that we haven’t discussed yet. One is that stories like this often seem like they’re aimed at the PWD, but they’re usually aimed at showing off the TAB community’s compassion and charity toward that person. Who got all the interview time in Matthew’s story? The star player who gave up his starting position–not Matthew. The focus was not Matthew or his abilities. The focus was, “Isn’t it great how Thomas–and by extension other kids without disabilities–give up what’s important to them so the disadvantaged kids can have a chance?” The underlying message remains the same: PWDs just aren’t worth the time. The best we can do is give them fifteen minutes of fame to prevent them from feeling unequal or left out.

This brings me to the other issue: why was Matthew only allowed to play in the basketball game on Senior Night? Here I should explain that Matthew is completely ambulatory and other than significantly different speech, his disability seemed mild. (I don’t know for sure, but I’m going off what information I have). Why had he never been invited to play before? If the other team members cared about him as much as they said they did in the interview, why didn’t they ask the coach to modify the games so Matthew could participate? Why was Matthew only made to feel special and worthwhile on a night that was already a special occasion? It seems the message there is: yes, PWDs matter, but we’ll wait to notice them until it’s convenient. If we give them a little attention here or there, they’ll be more likely to stay quietly and peacefully on the sidelines the rest of the time.

I’ve said it before and I’ll say it again. People with disabilities are people first. Why aren’t we treating them like people? Why do they remain our special mascots, our “sometimes buddies,” our–yes–pets? Why?

This has happened to me, too. I wasn’t an athlete–ahem, equipment manager. I was a chorus girl. I loved chorus and I wanted nothing more than to have a real part in our school’s musicals. This never happened, because I had CP. I was consigned to the chorus line whose main function is to dance, even though my director’s justification was that because I could not dance, I should not play lead or supporting characters who had to do it. Yet, when I received walk-on roles, she made it a huge deal, even complimenting me at length once in front of the entire cast at a dress rehearsal.

I didn’t fight it then, for a number of reasons. I was raised that “you don’t make trouble in school/you don’t mouth off to teachers.” My parents were already suspicious of this teacher because she had a somewhat flaky personality and had tried to get me to do things that were physically unsafe. I was also afraid of getting kicked out of chorus; because of my CP and the electives offered at school, it was one of the few electives in which I could realistically participate.

I should have fought it. I should’ve looked at my director and said, “Hey, Ms. S, what gives? You gave a lead role to a white girl when the script clearly describes the character as of Spanish descent. You edit out profanity for yourself, and for actors who don’t want to use it. What is the big deal about modifying a play for a mild physical disability? I’m not asking you to exempt me from memorizing lines, singing, or doing anything else the cast can do. What is your problem?”

I should have, and didn’t.

To PWDs who may be going through this, or PWDs like Matthew who may not realize what’s going on: I get it. Positive attention is positive attention, and I’m not trying to discount how good you felt on Senior Night, or whenever. But the way you were treated–that’s the wrong way to handle a situation like yours. You deserve better than fifteen minutes of fame. You deserve to be equal and to get your share of the attention, your legitimate shot at being the star.

Fight for it.

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.

Good Idea, Mixed Results: A Primer on the Principles of IDEA

Hello, readers,

Well, it’s February third (February fourth on the other side of the International Date Line). So I assume none of us woke up to “I Got You Babe” and a reminder that it’s Groundhog Day, unless of course you’re watching the movie. That being said, Disability World can be full of deja vu. People with disabilities and their loved ones are often frustrated because they have to jump through the same hoops over and over to access what they should be entitled to simply because they are human beings. I have found, though, that knowledge is power. Once you understand how some of those hoops work, they can be easier to navigate. For example, last month we talked about advocacy–why it becomes an issue for PWDs and how self-advocacy helps it become less so.

Today, we’re going to talk about the hoops people with disabilities face in the educational system. You know the classics: teachers who won’t follow IEPs, “experts” who change an IEP or other plan without parental consent, and administrators who believe special education is a place, not a service. These are frustrating in the extreme–throughout my school career, they left my parents and I wishing we could slap sense into people. Fortunately, my mom knew her way around IDEA, so she was able to call teachers and administrators out when they tried to skirt federal law. Once I got old enough, I learned those ins and outs too, and now I’m here to share them with you.

What is IDEA?

IDEA stands for Individuals With Disabilities Education Act, a federal law first enacted in 1975 and revised in 1994 and 2004, to ensure children and teens with disabilities received proper educations and opportunities within their communities. I usually pronounce it like the word “idea,” although technically you’re supposed to say I-D-E-A. Was it a good “idea?” Yes, in theory. Back in 1994, we did have more disability rights on the books than existed in, say, 1958 or 1972. Children with disabilities weren’t automatically institutionalized as much, though it still happened. People were beginning to wake up to the fact that everyone needs some type of education and it should be as appropriate as possible.

Of course, IDEA has its problems. One of the biggest in my opinion is that, like the ADA, the law is too broad in certain areas. We’ll get to specifics in a minute, but for example, misusing IDEA could lead to a parent claiming his or her child has a disability where one does not classically exist (i.e., claiming rebellious behavior with no cause other than disrespect is Oppositional Defiance Disorder). You might also get parents and students who abuse the modifications they are given, making it harder for kids who need help to access it because, “Well, this was abused before so we don’t offer it anymore.” The law is also broad enough, and yet narrow enough, that certain populations such as gifted kids who also happen to have disabilities are grossly underserved.

That being said, IDEA can be a tremendous help to any parent or guardian who wants the best education for his or her child. It does a lot to protect those kids. Let’s look at the policies briefly:

1. Zero Reject. This policy states that a public school cannot refuse to educate any child on the grounds of disability. Teachers and administrators often run afoul when it comes to kids with severe disabilities–“What? Layla can’t function on a level higher than kindergarten, so why bother educating her?” EENH, wrong! Thanks for playing, anyway. Zero reject requires that even if Layla can only write her name and read to a certain extent, the school has an obligation to teach her that or they have failed. It also works the opposite way. Refusing to teach a gifted child with a disability on the grounds that his or her combination of needs is “too much” for the school is a flagrant violation. Until or unless the parents remove the child from your system, you will educate that child.

2. Least Restrictive Environment (LRE). This is one of the simplest principles of IDEA, yet schools ignore it all the time. It states that a child must be educated in the same way as his peers without disabilities as much as possible. So if Seamus has autism and stims in class, yet can function inside a mainstream classroom outside of stimming, he should not be placed in a self-contained classroom all day. If Richard has dyscalculia, yet is an English whiz, he should participate in English with his peers while receiving the least restrictive help possible for math. This also works the other way; if a child needs a self-contained classroom or his or her parents prefer it, and the disability warrants it, the school cannot force the child into a mainstream room.

3. Parent Participation. Again, a simple policy that schools constantly violate, either because they don’t know what the law says or think they know better than the parents. This policy states a parent has the right to participate in all meetings, planning, or other activities concerning the education of his or her child. (This also applies to guardians, whoever they may be). They want to sit in on an IEP meeting and share concerns? Then, teachers and administrators, you listen. They ask you a question? You answer. You also do not, under any circumstances, modify an IEP or any other plan without parental consent. Finally, you do not deny participation in planning to a child who has reached majority (14-16 in most school systems).

5. Due Process Safeguards. This is a bit more complicated because it involves several scenarios that could come up because any of the above or any of the below were violated. This part of IDEA states parents, guardians, and their kids are protected under law and allowed to exercise freedom of speech in the educational system. For example, let’s say Abigail has a disability and her single dad doesn’t agree with something in her IEP. The teacher in charge of the IEP tells him he can’t question the IEP, and he walks away because he doesn’t know better. Wrong–turn around, Dad! (Or Mom, or Grandma, or Aunt Sue). You have every right to question, every right to protest–heck, go ahead and sue if you have to. I’m not saying this happens only to single parents. It happened to my traditional nuclear family. But some families may be more vulnerable, and some disabilities may be less apt to come under scrutiny. As in, if Jun-Ming functions at a ten-year-old level, why shouldn’t we just leave her in the high school special ed room? So, be on your guard and use your safeguards.

6. Free, Appropriate Public Education (FAPE). A lot of this goes back to LRE and what is best for the child or teen. IDEA also ensures that for example, the parents of a child with a disability can’t be charged for his or her education “because it takes more to educate him.” They also can’t be charged for education-related services (“Oh, if you want Charlotte to have a one-on-one aide, you have to pay for it.”) IDEA also entitles these children to a public education, meaning alongside peers without disabilities and educated in their same manner as much as possible. Under FAPE, it also states that “an IEP must be written and enacted to address the unique needs of the student.” In other words, if it’s written, is it done? If not, the school is in violation because, despite the pitfalls of IEPs, they are federally mandated and often necessary.

As a side note: private and charter schools have their own rules, but I strongly believe that no private or other school should deny education based on disability. If you are a parent of a child in a private school or other school setting and have faced discrimination or violation of any of these policies, fight!

7. Non-Discriminatory Assessment. This policy is exactly what it sounds like. For example, let’s say Marguerite only speaks French because she’s new to the country. She’s tested to see where she fits in academically, but all her tests are in English, which causes her to perform poorly. Marguerite is then placed in special education. Hit the buzzer with me now: WRONG! Marguerite must be tested in her native language. Non-discriminatory assessment also prevents scenarios like this:

  • Hakim’s IEP team writes IEP goals based on their own perceptions of his disability and what he can do, grossly underestimating his
    abilities (and possibly violating FAPE or LRE in the bargain).

  • Ilsa has hypertonic muscles that prevent her from writing. Yet, in a state assessment, she is required to write by hand for part of the test. The illegible results are then used against her.

  • Tamara is gifted, yet has a disability. The assessment she is given are only disability-focused, so that her teachers and the administrators feel justified in not giving her challenging educational opportunities.

    This is just a primer–IDEA for Dummies, if you will, though I know none of you are dummies. 🙂 For more information, you can go to:

    http://idea.ed.gov/
    http://www.parentcenterhub.org/

    Several other sources are available–Google is your friend. Remember, it’s always a good “idea” to educate yourself, no matter what your child’s disability is or where he or she is in school.