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 www.visitability.org, 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 Girls? Every 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. 

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CHECK OUT THIS POST ON 1800WHEELCHAIR.COM !

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Sources:

http://www.disabilitycanhappen.org/chances_disability/disability_stats.asp

http://www.disabilityscoop.com/2014/01/21/accessibility-requirements/19035/

http://www.alsa.org/about-als/who-gets-als.html

http://www.cdc.gov/chronicdisease/resources/publications/aag/arthritis.htm

Kids With Disabilities Being Housed In Nursing Homes

Hey, have you heard about what’s happening in Florida? 

What those brainiacs have decided to do is stick children with disabilities – some who are still infants – into institutions and nursing homes even though the level of care they need could be met in their own homes! I know it sounds outlandish – “Those types of things just don’t happen anymore!” – but it’s the God to honest truth! Instead of making the services these kids and their parents need available in such a way that would allow them to stay within their community, the highly paid, smarter-than-us-regular-folk, criminals-in-charge decided that they would rather use those funds to pay an institution like a NURSING HOME FOR THE ELDERLY to “care” for babies and children!

THE INVESTIGATION

A team of investigators  from the Justice Department visited six large nursing homes in the Sunshine State and found over 200 children with disabilities living in them. In many of these places, the kids are corralled into small, designated areas – these places are, after all, built to house the elderly, not children, so I’m guessing there aren’t too many areas in a nursing home that would be suitable or safe for a kid. And by the way, I use the term “house” spitefully; I do not think the majority of the habitants of these institutions need to be in places like these – repositories to contain the old, sick and frail that will bring a stream of money to the states they are located in. The average time these kids spent in a nursing home or other institutional setting was 3 years but they did come across some cases where the kids were there for over a decade.

These investigators spoke with many of these families and discovered that the parents WANTED their children home but couldn’t keep them there because Florida was not willing to make resources available to them, instead choosing to give those resources to the nursing homes. In some cases, these children are living hundreds of miles away from home which mean little, if any, contact with mommies, daddies, brothers, sister, aunts, uncles, etc.

Part of the purpose of the Americans with Disabilities Act (ADA) is to protect people with disabilities from being placed in environments they don’t deserve to be in just because it’s easier for the forces that be. It states that all patients and students must be placed in the least restrictive environment appropriate for that individual. U.S. Assistant Attorney General Thomas Perez has noted that Florida is NOT in compliance with the ADA. So the Florida Agency for Health Care Administration (AHCA) has got to be missing the mark because I sincerely doubt the Assistant AG would get involved unless there was some merit to the accusation brought forth by the investigation done by the Justice Department. There was also a Supreme Court decision in 1999 (Olmstead v L.C.) that prohibits forcing a person to be institutionalized in order to receive services they need when they can actually be getting those services in a less restrictive environment like, gee, I don’t know, their OWN HOME! 

WHY IS THIS HAPPENING?

As always, it’s all about the benjamins, baby. According to information dug up by the investigation “facilities often receive over $500 a day to care for kids, more than double the rate for elderly residents.”  An official from the AHCA, Elizabeth Dudek, was quoted as saying, “The agency will never interfere with a family’s choice for the location of their child’s care.” Hmmmm, the Justice Department doesn’t seem to agree, Ms. Dudek. In fact, it issued a Findings Letter just this month concluding that Florida is indeed violating the ADA and unlawfullyinstitutionalizing children! Here’s exactly what the letter states:

The United States issued a Findings Letter in September 2012 concluding that Florida is violating the ADA's integration mandate in its provision of services and supports to children with medically complex and medically fragile conditions. After a comprehensive investigation, the Department found that the State of Florida plans, structures, and administers a system of care that has led to the unnecessary institutionalization of children in nursing facilities and places children currently residing in the community at risk of unnecessary institutionalization. Florida has implemented policies and procedures that limit access to medically necessary services and supports that would enable children to transition home to community-based settings. The Department recommended that the State implement certain remedial measures, including the development of sufficient supports to enable children with disabilities unnecessarily segregated, or at risk of unnecessary segregation, in nursing facilities to receive services and supports in integrated settings in the community.

SAD VISIONS

I keep getting this mental picture of my daughter sitting in a home somewhere, alone because she can’t get up and go play with other kids and there’s not enough nurses or nurse’s aides around to give her some attention. She would have her beautiful long brown hair chopped off because it’s easier to wash and brush this way (yes, they DO do this), her wheelchair would not be fitted for her bony butt and her involuntary movements and she’d probably be all lopsided in it with worn out belts (I have seen some students in her school who live in group homes with chairs like these); they wouldn’t know that Entenmann’s chocolate chip muffins are her absolute favorite thing in the world and her teeth would probably be rotting out by now because it’s not easy to brush her teeth. But what gets to me the most is, she would be sad and lonely. Spending your days stuck in a chair pushed up against a wall somewhere is no way to live. Being two years old and confined to a room because the rest of the building is not safe is no way to live. Being a baby stuck in a crib with nobody to love you or hold you because there just isn’t enough time in the day is no way to live. And having a hospital as your “home” is definitely no way to live.

TOO BAD THERE’S NOTHING WE CAN DO TO CHANGE IT…OR IS THERE?

Florida needs to be woken up and made aware that they are being watched. It’s a sad fact that some people will only choose to do the right thing when they know they’re being watched but if that’s what it’s gonna take then I want to get as many eyeballs on them as possible!

Would you like to do something to let them know we’re watching that will only take 2 minutes out of your day? Go to http://ahca.myflorida.com/ On the left side of the page, you will see a picture of Elizabeth Dudek, Secretary, and right below her name is a link to email her. Send her an email stating that you read how her agency is institutionalizing children rather than placing them in their own homes. This not only violates the ADA and its least restrictive clause but it is morally and ethically wrong to force families to separate because the AHCA would rather pay a nursing home than provide in-home services. Tell her you are against this practice and want her to feel shameful for treating human beings this way. Cut & paste this if you wish; it will make the task even quicker for you!

Don’t wonder why somebody doesn't DO something to change something; 

BE THAT SOMEBODY!