Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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.

Attention Gamers: Cool New Audio-Only 3D Adventure Game!

I’m not a gamer and even I want to play BlindSide!

BlindSide Logo

BlindSide is a terrifying new audio-only adventure game, set in a fully-immersive 3D world you’ll never see. Put on your headphones, close your eyes, and explore the darkness. Listen as the world rotates around you!”

According to its website:

The main character is Case, an assistant professor who wakes up blind and hears mysterious creatures devouring people in his now-destroyed city. Case and his girlfriend must find a way out of the murderous mayhem – without seeing anything!

It’s only $3.99 to download the game at the app store and it’s accessible for both blind and sighted players. There are also PC and Mac versions – the link is on the website. Here’s that link for you to check it out yourself. 

So plug in your headphones, close your eyes and have an adventure in the BlindSide!

Stem Cell Research Trial Beginning January 15, 2014

Beginning on January 15, 2014, the University of Texas at Houston will begin a clinical study on 30 children with Cerebral Palsy (CP). Patients will be between the ages of 2 and 10 and the study will last one to two years.Here’s the story on one participant, 10-year-old John Drambel. 

 This is a landmark study because the patients are receiving stem cells cultivated from their own hip bone marrow. Up until now, the only stem cell studies on people with CP in the United States have been done with patients given stem cells from their own banked cord blood. This is very exciting – and long awaited!

If you’d like to find out about other research topics or possibly be a part of a clinical trial you can find them at http://clinicaltrials.gov/

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

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WHERE DO YOU STAND ON THIS DEBATE?

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Assistive Technology Assessment is an Important First Step

Because of technology, an 11-year-old girl who can’t physically hold a pencil is on the honor roll. If not for a $200 word processor called a Forte who knows where she would be! Not only does it give her the ability to keep up with her fast-paced 6^th grade class, it’s cool and sleek so it gives her a “coolness factor” among her peers. I would argue these are the top conditions that need to be met when picking out appropriate technology for individuals. (You can read that article here: http://www.azcentral.com/news/arizona/articles/20131216assistive-technology-aids-special-education.html?nclick_check=1 )

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It’s important to remember to assess needs at an individual level before jumping straight to a tool. Too many times, students (and adults) are hooked up with a great piece of equipment that doesn’t provide them with what THEY need. There is a process, and anybody in the disability world is too familiar with how long these processes can be, but in this case it’s super important to follow through with a thorough assessment to ensure getting the best assistive technology possible.

For tips on how to do these assessments, check out The Assistive Technology Playground by my peer Marvin Williams.

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Medicaid For People Who NEED It

When we hear “Medicaid” many imagine a lazy, non-working individual, sitting at home watching Jerry Springer and Maury. But the fact is, 70% of Medicaid spending goes towards people with disabilities. According to a U.S. Census Bureau report released at the end of 2008, there were 54.4 million Americans living with at least one disability in a census taken in 2005. This means roughly 1 in 5 people are disabled. Of these 54.4 million, 35 million had a severe disability. These individuals needed assistance in performing activities of daily living (ADL) such as getting into or out of a chair or bed, dressing, bathing and eating. In many cases, assistance is also needed for other activities such as shopping, paying bills, using the telephone and light housework. (Americans with Disabilities, 2005)

Imagine not being able to get yourself to the bathroom or not being able to get yourself out of your own bed. What would you do if you were hungry but could not even make some simple toast for yourself? Are you going to be able to move your mom or dad into your home and care for them if they break a bone or develop dementia? These are some of the things that Medicaid can possibly pay for (or at least a portion of it). Being that it is so many peoples’ lifeline, why is it that when our government needs to tighten up the budget, they look to those who need the most to give the most? Cuts are being made to Medicaid on a regular basis and the health and well-being of our most vulnerable citizens is being threatened.

“Why don’t they just go get a real job” is commonly heard coming from the mouths of the able-bodied clueless. But I am here to tell you that Medicaid serves the type of people who can’t “just go get a real job” because they have disabilities that block them from doing so. In the 2005 census, less than half of the disabled population between the ages of 21 and 64 were employed. (Americans with Disabilities, 2005) With the state our economy is in as of late, I imagine that number to be much higher now.

Among individuals who are disabled between the ages of 25-64, 27.1 percent were in poverty, compared to 9.1 percent for people who had no disability. Of this same group, 57 percent of those who reported having a severe disability were receiving some form of public assistance through government programs such as food stamps or public housing where only 7.3 percent of non-disabled individuals required such assistance. (Americans with Disabilities, 2005) So before we go slashing public assistance, let’s think about the actual people it would be affecting. 

Too often the head honchos look at the bottom line and ignore the human beings that make up that line.