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

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

WHERE DO YOU STAND ON THIS DEBATE?

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

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 )

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

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.

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

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.

Shooting at LAX - How YOU could have prevented it

KILLING AT THE AIRPORT

In case some of you haven’t heard, there was a shooting at LAX, a major airport in California, USA.  Paul Ciancia walked into the airport and with a motorcycle helmet on started shooting an assault rifle, killing TSA officer Geraldo Hernandez and wounding two other officers. He was later shot by police and is currently hospitalized but unable to speak.

Now that you’ve gotten some background, I want to tell you that the point of this writing is not to report to you about yet another public shooting but to WAKE YOU UP! Yes, dear reader, I am talking to YOU! There were so many clues leading up to this particular tragedy that it leaves me with my mouth agape and fully enraged wondering why didn’t somebody DO SOMETHING? He sent rambling texts to several friends, people who knew him well, people who say they thought he was acting “weird” and out of his normal state. And it went on for an extended period of time. He became introverted, quiet and anti-social. He became suspicious of governmental agencies and developed an anger for, specifically, the TSA. He talked about something bad about to happen; at one point, he texted several different people at one in the morning with messages saying he had something very important to tell them and asking them to call him back as soon as possible; he asked all his roommates at different points to give him a ride to the airport so he can get back home to New Jersey but didn’t have a specific flight to get on. It goes on.

SOMEBOD(IES) DROPPED THE BALL

 So, I ask his roommates and friends: Why didn’t you ask him if something was wrong? Why didn’t you ask him if he needed help? Why didn’t you ask him to dinner, to drinks, to a game, something, anything, to feel him out?? And if some of you did, and he denied there being a problem, why didn’t you try harder? All of them are now saying, “I never thought he could do something like this.” Really? Well, guess what? He could and he did. Just before the shooting, his family in New Jersey called the police in their area to ask they contact the police in Los Angeles to do a welfare check after receiving a series of odd texts. They were concerned that he was getting ready to hurt himself. Unfortunately, the police arrived about 45 minutes too late. A roommate had already driven him to LAX and the shooting had already commenced.

Now two families are suffering tragic losses. The family of the shooter is suffering with shock and disbelief and grief. They will undoubtedly be judged for their son’s actions for a time to come. Officer Hernandez’s family is suffering greatly as well. His unnecessary and untimely death will impact every family member for the rest of their lives. His is the first death in the line of fire of a TSA officer since its inception in 2001.

STOP THE KILLINGS

Now I want you to THINK. Think about the people in your lives. Your friends, your sisters, brothers, uncles, cousins, your co-workers, your Facebook contacts. Is anybody standing out in your mind because they’ve changed? Has anyone stopped interacting as much as they used to online or stopped showing up at social outings they were always a part of? Does anyone who used to be talkative now barely speak? Has someone become withdrawn, seem sad or mad all the time or talk about odd topics you’ve never heard them talk about before?

Invite them to lunch. Stop by their home with bagels and a box of joe. Ask their immediate family members or other loved ones if they’ve noticed the same thing. Follow your instincts – if your gut is telling you something is off, then it IS. Don’t wait for somebody else to do something. BE THAT SOMEBODY. You could save a life! After the LAX shooting – and countless others in very recent history – that is an unfortunate understatement.

BE THAT SOMEBODY