People With Disabilities Have A RIGHT To Make Choices

What's For Lunch?

There may be some people who wonder how a person with disabilities can decide important things such as which doctor or therapist to see or which facility to go to. I wonder how anybody can take away another’s right to make such decisions! The institutionalization that began over a century ago in the United States is a direct cause of the stigmatization of people with disabilities. The multi-generational feeling has been that this population is incapable of making minor decisions, such as what to eat for lunch, let alone important life decisions as where to live and which doctor to see. Let’s not even get into the social aspects of life like love, sex and friendships!

"We the People" Includes People With Disabilities!

What A Community IS

The Department of Health and Human Services has completed the final rule on what home and community-based services are under the Affordable Care Act. Why is this so important? Because now a person with disabilities cannot be forced to live in an institution or nursing care facility and made to call it “home”. This statute states “that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities…or any other locations that have the qualities of an institutional setting”. There were reports of “homes” being built on the grounds of former mental institutions where the patients inmates were herded under the guise of “community settings”.

Here are some of the (what I think should be obvious) stipulations to the Final Rule of the Home and Community-Based Services plan: 

* Settings must be integrated fully into the community – you know, like how your home, job, doctor, shopping mall, etc. are 

* Individuals must have access to the community. This sounds like a no-brainer to me. It’s still shocks me that obvious rights like these need to be put down on paper in order to be understood 

* Individuals have a right to privacy in their homes. We needed to write this out – AGAIN – in a new federal statute. I guess the Constitution and Bill of Rights don’t apply to people with disabilities 

* Person-centered care plans are required which means that the individual gets to choose where they go, who they see and what they do, themselves, rather than having a doctor or caregiver decide what is best for them. Rule of thumb: A care plan is made with the individual not for the individual.

There is still a long way to go but this is a good step towards equality in the social and civil rights of people living with disabilities.

Subminimum Wage for People With Disabilities Debate

As part of the New Deal of the 1930’s, subminimum wage was allowed for people with disabilities. Employers can apply for waivers under Section 14(c) of the Fair Labor Standards Act. Rates for workers with disabilities are decided upon by comparing what their productivity level is to that of an experienced worker without disabilities.

Advocates against subminimum wages believe more money should be spent on training programs that are more creative and provide more challenging work than wrapping plastic ware at restaurants or folding boxes, repetitive task work that is common amongst employed workers with disabilities.

Here are some pros and cons to the consider:

FOR Subminimum Wage - work provides training for better, higher-paying jobs - jobs give individuals structure, keep them busy - working at any job challenges individuals - eliminating subminimum wage would mean employing fewer people within a population that already has a very high unemployment rate - a subminimum wage is better than no job at all

AGAINST Subminimum Wage - people get stuck in their job for years and never advance or leave - low pay is unjust - people with disabilities are not fully integrated into the workforce - allows for abuses against people with disabilities - stigmatizes people with disabilities

Here’s a great article on this topic: http://www.utsandiego.com/news/2013/Dec/22/tp-subminimum-wages-for-disabled-scrutinized/2/?#article-copy

*************************************************

WHERE DO YOU STAND ON THIS DEBATE?

*************************************************

Don't Hate The Cure, Hate the Haters!

I am so sick of people who look for "cures" or better treatments or a change in their medical treatment being looked at as vile creatures that should be relegated to the depths of all of Dante's realms for eternity.

People with disabilities are already stigmatized and often cut off from general society because of antiquated assumptions and prejudiced thought. Why must people with disabilities have to endure hateful accusations from people within their own communities???

For those of you who may be unfamiliar with my family here’s a tiny recap. My daughter is now 15 years old. She has cerebral palsy which affects all four limbs that was caused by an injury at birth aka doctor’s error. She is non-verbal, non-ambulatory and needs full assistance in every aspect of life. She is a beautiful, intelligent, loving, funny girl who is disabled. I had her when I was barely 20 years old and raised her on my own. It was hard. I mean, really tough. Forget the psychological price a parent pays, the physical bill is enough to make some people dine and ditch! I can’t imagine myself without my angel face but I would be lying if I said there weren’t days where I felt like I just couldn’t do it anymore.

I would also be lying if I said I don’t still wish there was a cure or miracle waiting out there for us. If I came across some medical procedure, medication, doctor, wand, fairy dust or crystal ball that would take the CP right out of her without the risk of death or something like that, I wouldn’t even take a second breath before I screamed out, “HELL YES!!” Why do other parents – especially those of children with autism I have come to discover – judge me, and others like me, for that? Why do people in the disability community insist on further alienating individuals in their community who WANT a change? One paraplegic may be fine with never walking again while another searches for the scientific breakthrough that can give her her mobility back again. Is the former a “better person” than the latter because she’s “come to terms” with her disability, “accepted what’s been dealt”? Is the latter “better” because she’s a “fighter” and “isn’t giving up”? Why does one have to be better than the other? Each one of you reading this makes decisions for your own life that you feel is in your best interest. Each one of you reading this makes decisions for your own life that you feel is in your best interest. I’m 100% sure that none of you like it when someone offers their thoughts on which direction you should go in, especially when you don’t even ask!

Those parents who say things like, “I would never cure my child because then they wouldn’t be who they are”. Really? Every circumstance in everyone’s life makes us who we are. The family I was born into, the way my parents spoke to me, the school I went to as a kid, the friends I made in high school, the jobs I held in my 20’s…all those things make me into who I am. And I’m still evolving. Who I am in 5 years will be different than who I am at this very instant. So yes, if a child is cured or healed of their illness/disease/disability, they WILL be a different child. Anything that happens TO him, FOR him, WITH him, BY him will change him, for better or worse, whether he has a disability or not. 

How can anyone automatically assume that they know beyond a shadow of a doubt what their kids’ desires are when that kid can’t vocalize them? And who are you to judge me and others like me for wanting our kids to be able to have a different life? Do these people not think that if my daughter was given the choice, she would choose to WALK? Do they not think that she would love to TALK, to HAVE FRIENDS, SLEEPOVERS and GIGGLE FESTS? Do they not think that she would choose to have an easier road so that putting on a shirt is not a struggle; so that eating is a matter of preference rather than a chore of organizing her lips, tongue and cheeks in a manner that would allow her to bite, chew and swallow without spilling, coughing or choking??

Yes, if she were a “normal” kid in a “normal” school, she would be different. Maybe she would have an attitude – teenagers often do. Maybe she would be a bookworm. Maybe she would be a tomboy or a princess. Who the hells knows? I wish I did. Don’t villainize me for wanting the best for my child. Isn’t that what a parent is supposed to want?

What A Learning Disorder Is

WHAT’S A LEARNING DISORDER?

Today, boys & girls, I want to discuss what a learning disorder (LD) is.

If your kid doesn’t do well in school; if he can’t focus on a task; if he is always tapping his fingers or pencil; if he continually talks to other students in class during work time; if he never seems to be able to complete his homework; if he fails pretty much every test he takes, he may not be a Bad Kid. He may actually have a learning disorder.

LD is an umbrella term that can encompass many types of learning problems. It has NOTHING to do with INTELLIGENCE or MOTIVATION. In other words, if your child has a true LD there is no amount of punishment that will motivate him to “do better”. Taking away all his video games and all extra curricular activities just for the sake of punishment will not help. 

An LD is not just about reading or numbers. It can also cause problems with reasoning and speaking. Your son could be looking right at you when you’re explaining something to him but he can’t grasp what you’re saying. Not because he isn’t paying attention but because his brain is different from yours. A kid with an LD might love to read but can’t do simple math. He might grasp the entire periodic table and know how each element interacts with the other but cannot understand what you mean when you say, “You need to finish up before dinner time.”

WHAT A LEARNING DISORDER IS NOT

I can remember times in elementary school where I just couldn’t get what I was being taught. 5^th grade science was the worst. I just didn’t enjoy it and couldn’t be bothered to study it so needless to say, I didn’t score so well on the exams. But it wasn’t because I had a processing disorder or an LD. I just really hated science. A learning disorder is totally different. A kid with an LD isn’t dumb or lazy. They are wired differently which means they don’t take in information the same way as kids without an LD. You can’t be expected to follow a recipe if it’s written in Swahili (and you only know English) so how can you expect for your child with an LD to learn how to add or spell or to tell the difference between stratus clouds and cirrus clouds if you’re trying to teach him the same way kids without LD’s are taught?

YOU GIVE IT A TRY

Let’s try a little experiment, shall we? Think of something you enjoy. It can be anything.  Are you great at cooking? Math? Gardening? Super. Now go to a foreign country and sign up for a class in their language and see how well you do.  My guess is, not that great. How do you think it would be, to sit in a classroom with someone speaking at you in a foreign language & where everyone else in the class is getting it? Would you be anxious, trying to pick up on what they’re doing, what page they’re on, what they’re writing and reading? Would you be bored, not being able to understand the words that are coming out of the instructor’s mouth, so you start daydreaming or gazing out the window? Would you be irritated, trying to figure out what the hell is going on, your fellow students getting obviously annoyed that you keep looking over their shoulders or asking questions?

And that’s in a class that’s on a topic that you ENJOY.

Imagine how it might be for a kid who deals with these emotions on a daily basis, in a place they have come to hate and feel uncomfortable in because it’s all a foreign language; a place where they have become hated because they don’t follow along easily or are disruptive in a class that teaches them nothing.

HOW CAN YOU TELL IF IT’S A LEARNING DISORDER?

OK, so you’re not sure if your kid has a learning disorder. Here are some signs at different ages that may clear it up for you: (the following chart was found at Helpguide.org) 

Preschool signs and symptoms of learning disabilities

§  Problems pronouncing words

§  Trouble finding the right word

§  Difficulty rhyming

§  Trouble learning the alphabet, numbers, colors, shapes, days of the week

§  Difficulty following directions or learning routines

§  Difficulty controlling crayons, pencils, and scissors or coloring within the lines

§  Trouble with buttons, zippers, snaps, learning to tie shoes

Grades K-4 signs and symptoms of learning disabilities

§  Trouble learning the connection between letters and sounds

§  Unable to blend sounds to make words

§  Confuses basic words when reading

§  Consistently misspells words and makes frequent reading errors

§  Trouble learning basic math concepts

§  Difficulty telling time and remembering sequences

§  Slow to learn new skills

Grades 5-8 signs and symptoms of learning disabilities

§  Difficulty with reading comprehension or math skills

§  Trouble with open-ended test questions and word problems

§  Dislikes reading and writing; avoids reading aloud

§  Spells the same word differently in a single document

§  Poor organizational skills (bedroom, homework, desk is messy and disorganized)

§  Trouble following classroom discussions and expressing thoughts aloud

§  Poor handwriting

GET HELP

If you think your kid has a learning disorder, please get help for him NOW. It’s important to note that people with LD’s are usually just as smart as anyone without an LD. Don’t let your personal feelings on what it will mean to YOU if your son or daughter is diagnosed with a learning disorder. Denying that there is a greater issue (like a disability) at hand because you're afraid of how you will look to other people is selfish and wrong. Give your kid a chance to learn and to grow!