Friday, January 24, 2014

Even YOU Can Become Disabled - Why Visitability Is Necessary

A Wheelchair Wonderland

I remember vividly a point in time where I wished desperately that the whole world was in a wheelchair so that everyone could know what my daughter had to go through just to go to someone’s home. The city of Austin, Texas is creating that world. Well, kind of.

The city council in Austin, Texas is currently deciding on new rules that could make all newly built homes wheelchair accessible. The first two drafts have already been approved so it’s looking good that this third and final draft will push through without a problem. If approved, levered door handles, light switches placed at lower heights and wide doorways will be features required on the first floors of new single-family homes and duplexes. Not widely talked about –yet – this is known as “visitability”. This is a concept in home design that would allow a person in a wheelchair that lives there or visits access the home without any problem. There are cities in the US that already have these rules in place: San Antonio, Atlanta, St. Petersburg, Fla., and Tucson, Ariz. According to the website, a home is visitable when it meets the following three basic requirements:
     * At least one zero-step entrance
     * Doors with a minimum of 32-inch clearance
     * At least one bathroom on the main floor that is wheelchair accessible

Becoming Disabled

Some of you may be wondering why this is necessary. If you’re reading this and you’re not disabled then you probably don’t view this as important enough to make legal regulations over. But let’s consider that. Just because you weren’t born with a disability doesn’t mean you never will become disabled. Here are three examples you may have never thought about:

1. Old Age
Think about your (or your friends’) grandparents. Do you know any who use walkers, hearing aids, have trouble standing or reaching or bathing or cooking? Did they always have those problems? Most likely, these disabilities are of the acquired type meaning they were born without a disability but because of aging they now have difficulty with one or more activity of daily living. Oftentimes, the word “disabled” is not used when referring to senior citizens if they’ve lived independently their entire lives. But that’s exactly what they have become (and what the large majority of us will become should we be blessed enough to live into our 60’s and beyond). A home built with visitability in mind will increase the chances that a person can live on in their own home rather than being moved into a nursing facility. And by “a person” I mean YOU!

2. Illness
There are also people who are fine into their 30’s and 40’s and then become ill or develop medical conditions which limit their ability to be as independent as they have always been. Multiple Sclerosis (MS) and Lou Gehrig’s disease (ALS) typically begin to appear in adults around this age and are debilitating diseases which cause severe physical disabilities. Don’t think this will happen to you? MS tends to appear between the ages of 20 and 40 in otherwise normally developing people. 15 new cases of ALS are diagnosed daily in the US; 60% are men and 93% are Caucasian.

Arthritis is another large culprit in this area. According to the CDC, nearly two-thirds of people with arthritis are younger than 65. It’s the most common cause of disability and limits or prevents over 21 million Americans from being able to climb stairs, walk more than short distances or work. It’s more common in women than men but affects all racial and ethnic groups. One study shows that the risk of developing osteoarthritis in your knee that causes pain is 45% and estimates show that 57% of people who have had a knee injury or are obese will develop osteoarthritis. That’s about half of you reading this! 

Of course, there are countless other autoimmune & nervous, central and respiratory diseases and musculo-skeletal disorders that can strike at any time and cause disability in an adult who has otherwise lived a healthy and independent life.

3. Accidents
What about those that are in accidents and become paralyzed or receive a traumatic brain injury (TBI)? Have you seen the show Push GirlsEvery one of those women was in an accident that paralyzed them. Any of these situations can happen to each and every one of you. Sounds bleak, I know but imagine what your life would be like if you couldn’t enjoy the little things you do now, like going to your sister’s house for dinner or to your friend’s for girls night as you always have because your wheelchair can’t go up the one step leading into their home or your wheelchair can’t get through the doorway into the living room? Now imagine if every new home built allowed you to come and go as you please, without even a thought?

Disabled America

According to the US census, 1 in 5 citizens has at least one disability and the number is set to grow as baby boomers age. Just over 1 in 4 American citizens in their 20’s will become disabled before they retire. But the “that can’t happen to me” mentality keeps most of us from worrying about our futures. 64% of wage earners believe they have a 2% or less chance of being disabled for 3 months or more during their working career. The actual odds for a worker entering the workforce today are about 25%! 

Maybe it’s time you start thinking about what could happen to you or your spouse now and planning ahead. Don’t you think having a home already set up to visitability standards would make your life easier in the long run? I hope to see this concept become the standard in my lifetime for all our sakes.

Would you like to know what the probability of you becoming disabled is? Check out the Personal Disability Quotient calculator here



Friday, January 17, 2014

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.

Monday, January 13, 2014

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.

Sunday, January 12, 2014

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!

Friday, January 10, 2014

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

Monday, January 6, 2014

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




Thursday, January 2, 2014

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 6th 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: )

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.


Wednesday, January 1, 2014

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.