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!

The Great American Family - Why The Traditional US Perspective Is Wrong

American Families

I am so sick of hearing about the “decline of the traditional family”. People, let’s get something straight here. Politicians are so quick to talk about the “traditional family” but in truth, there is no such thing. That type of family - a father and a mother with children -  was created in the 1950’s as a means to uplift the country’s emotional well-being and as a means to increase commercialism. A quick look back in history shows that white families (European settlers) were focused on maintaining independent households. Women did little child-rearing – this was mostly left up to siblings or servants. Children were not seen as precious or important as they are today.

Not too much changed in regards to the roles of family members until the Great Depression hit. This “traditional family” phenomenon only caught on and spread like wildfire because the depression was so difficult on society that people were craving feelings of happiness. The government played their role in creating this phenomenon by making it economically easier to be married – most government programs were geared towards supporting the family, meaning a married couple with children. And advertisers began to realize the enormous power they had in influencing the American public to buy their brand! What better way to compel them to buy, buy, buy than to show pictures of a happy family using their products? Their trickery worked. Americans wanted that nuclear family they felt would get them out of their bad situations.

The government and commercialism created a false sense of nostalgia. Do you get what I’m saying? People longed to have something back that never even existed in the first place! There was no such thing as the “traditional family” when the forces-that-be began touting it. The mindset of what made a family was set. What’s most important to realize is that the status quo – meaning, those “in charge” – decided what does (and thereby what does not) define the American family.

What makes up the traditional family?

Alright, let’s talk about it. We have the breadwinner, the husband and father who goes out and works hard to bring home the bacon, the MAN. Then we have the caretaker, the wife and mother who cooks and cleans, the WOMAN who always looks pretty for the MAN when he gets home from a hard day’s work. They get married, buy a cute home and have the CHILDREN, a boy and a girl who are smart, polite and love each other. There’s usually a PET playing in the background, too.

If you look at the ads tailored to brand the American Family they are also white, blonde with blue eyes, successful, in their late 20’s or early 30’s and quite beautiful.

Where’s the rest of society? Where are the non-whites? The poor? The gay? The disabled? It was during this time period the United States experienced the height of forced institutionalization of people with disabilities. If anybody from an outside country were to make an assumption on us based on the “traditional family” they would have a very incomplete picture. We are not all white; we are not all well-off; we are not all healthy; we are not all heterosexual; we’re definitely not all beautiful. So why do legislators insist on trying to fit everybody into this tiny little box?

Why “tradition” sucks

Here’s why: because huge groups of people are left out, that’s why. Just because the government (or any other non-governmental group) labeled something as correct, does it actually mean that it is? Yes, pushing everything into that box makes for a neat appearance and easy marketing. It’s just one box; no need to worry about different styles or sizes. The problem is, the person in charge gets to decide what everything in that box gets to do and feel and anybody who tries to get out of that box is seen as an outside agitator and is met with severe resistance and oftentimes, violence. Eugenics was a practiced "science" in the United States with a goal of creating a master human race - one that the traditional American family would fit into perfectly. 

Let’s go over a few things we would still be doing if we relied on tradition and those neat little boxes:

THE TRADITION	THE JUSTIFICATION OF THE TRADITION
Slavery - yep, if we kept on doing what we’ve always done just because that’s what’s always been done, whites would own blacks.	Blacks are not smart enough or capable of standing on their own; they’re so dirty that whites need their own entrances, water fountains and seating areas.
Suffrage – women wouldn’t be able to vote	Those crazy women and their irrational moods! How could they possibly form a thoughtful position on things as complicated as politics or the household budget?
Exploitation – kids would still be in our mines and factories	Their little bodies can fit in smaller spaces; their higher level of energy can produce more output; their level of intelligence merits less pay.
Institutionalization – anybody who was even slightly different would be locked up	Anybody with a physical disability cannot be a productive member of society; ADD & promiscuity would be enough to institutionalize someone today if we held on to traditional thought. Yes, really!
Interracial marriage – blacks were prohibited to marry whites	It would be the downfall to society as we know it if this was legalized. Those rapes committed by slave owners against their “herd” didn’t count though.

Marriage

So, marriage was defined by one man and one woman at some point in our history; does that mean that that’s the ONLY way it could be? I know, I know, some of you out there are thinking that marriage is supposed to be between a man and a woman because God made it so. “God made Adam and Eve, not Adam and Adam”. So catchy; so brilliant. Before all you religious zealots get your feathers in a ruffle and start commenting on God and how I will burn in hell, let me tell you this: I LOVE Jesus. He is my savior, my Lord. I went through my religious revolution I talk about here and I haven’t looked back since. But we are not here on this earth to judge others; only God holds that power. In Romans 12:16 we read: Consider everyone as equal, and don’t think that you’re better than anyone else. BOOM

So even if religion is the basis of your argument (which it almost always is), how is that a reason to put it into the LAWS of our country? I thought there was supposed to be a separation of church and state? One thing that really gets me is when Republicans want a smaller government, less intrusion, yet they want the law to control who can marry whom! (That’s not to say that Democrats haven’t traditionally been against same-sex marriage although the tides have been turning lately, haven’t they?)

You can’t have it both ways! Either the government CAN intrude into people’s private lives or it CAN’T; you can’t cherry pick in which area you want to stick your nose. I guess separation only applies when the status quo wants it to.

Which brings me to another point: Who the hell are you to tell anybody what they should do in their private lives? Listen, if Tina loves Shannon and they are happy together, how does that negatively impact MY life? Are they inciting a riot, spreading messages of hate or committing murder by being in a loving relationship? No. It seems to me that people who have a problem with same-sex relationships have some internal issues they are having difficulty sorting out.

And let me ask you this: what is the difference between “marriage” and “legal union”? Don’t they both give the same rights to the parties involved? It’s just another game of semantics played but when it comes down to it, you can call a rose a turd but it’s still a rose.

What do YOU think?

Accessible Playground For People With Disabilities

I forgot all about this park until I just came across an article about it. Thanks, Arc Circle of Family and Friends!

It’s called Morgan’sWonderland, located in Texas, and it’s designed for kids and people with disabilities to enjoy. It’s a place where special needs kids and able-bodied siblings can have fun together. Families can have meaningful quality time that everybody can enjoy.  It has some great features and it’s very inexpensive. Anybody in the disabled community knows that when you add the word “special”, or any variant of it, to something it automatically boosts the cost of the product or service by at least 20%. Not here. One-day passes for adults: $15; kids: $10: special needs: $0. Can't get much better than that!

I read an article about it in Family Circle. This choked me up when I read it:

"Before the park, I had to sit back and watch everyone else play," says 18-year-old Miguel Castro of San Antonio, who has spina bifida and is in a wheelchair. He celebrated his 17th birthday party at the park. "If I had to pick a favorite ride, it would be the swings. I hadn't been on one since I was 2 or 3 years old, and didn't really remember what it felt like," says Miguel. "Now I can go on them whenever we visit, and have fun like everyone else. It means everything to me."

Can you imagine not being able to remember what it felt like to be on a swing because your body wouldn't allow you to get into one after the age of 2 or 3? How many times did you play at the park or on the school grounds for recess with your friends? Did you slide down a huge slide or sit in the tire swing with a couple of buddies and spin, spin, spin till you got so dizzy you almost threw up? Did you play tag and chase each other on the monkey bars? In elementary school, we called the playground equipment “the big toy”. I have lots of awesome memories from playing on that thing.

My daughter has never and WILL never be able to play on a big toy. She can’t get on those swings or go up and down that slide even though she really, really wants to. I don’t even go anywhere where she would be watching other kids screaming in delight on one because of the torture on her face. If you think I’m exaggerating, take your own kid, niece, nephew, neighbor’s kid, whoever, to a park, sit them right in front of it and tell them they can watch from their seat but they can’t get up and they can’t go play.

That all sounds depressing, doesn’t it? I just keep in mind that it’s only one thing she can’t do. But I often wonder what the heck I’m gonna do when my son gets old enough to want to go to the park. I can’t NOT let him go; I can’t take the girl. The only thing I can figure is I will have to have separate play dates with my own kids!

I wonder what other parents of kids with and without disabilities do in these situations??

Handicapped Parking

Ok people. Let’s talk about handicapped parking. If you do not have a placard that allows you to park in a handicapped spot, DON’T PARK THERE. If you see diagonal stripes on the ground in between or beside a handicapped spot, DON’T PARK THERE.

This is a huge pet peeve of mine. Listen, if your lazy ass doesn’t feel like walking the 2 extra spots it would take to get from your car to the 7-11 door, then stay home. If you’re at Wal-Mart or the mall or at the Piggly Wiggly and the parking lot is packed and you don’t feel like walking that far, then stay home.

“I’m really late”

How is your being late my problem? Perhaps if you didn’t snooze the alarm sixteen times/spent less time applying the caked on make-up/hadn’t stayed out too late last night and woken up with a hangover the size of Cleveland, you might be running on time. But again I ask: how is your being late my problem? Now, because Your Royal Highness has decided it so, the spots designated for people who cannot walk as far, as fast or at all due to their disability are a free-for-all and I have to drive around the lot trying to find a spot that will allow me to get my daughter out safely.

“This will only take a minute”

It never takes just a minute…and even if it really did take only a minute, why should I have to wait on you? Ah yes, Your Royal Highness feels we should wait until Your Majesty has procured a mocha-capa-frappa-latte with just the right amount of sweetener and a carton of Pall-Malls before we, the commoner, the lowly simple folk can have the same opportunity. Wait; allow me to roll out the red carpet upon your exit, Your Majesty, lest your Louis Vuitton’s be soiled!

All joking aside, it is so infuriating when I see people park in the reserved areas and don’t even think twice about it. I know there are folks with invisible disabilities that use handicapped parking and they get the evil eye because they don’t look disabled. But then you have those who use their granny’s or aunt’s or brother’s placard. If you are somebody who uses a placard when you know you’re really not supposed to, I hope you get fined. And I hope I’m the reason you got fined. Because I looove calling people out on their douchery. That word is so gross and anybody who knows me knows I hate that nasty word but that’s how I feel about people who refuse to walk the extra 10 feet.

Stop being a jerk!

The Flu and You - 5 Tips On Staying Healthy

Flu season is upon us! OK, maybe I’m a little late with my announcement but it’s not too late to start thinking about it. According to the CDC (Center for Disease Control) the season can begin as early as October and end as late as May. There’s no way to tell when it will start, what viruses will be spreading or how long the epidemic will last. But we can take steps to curb and hopefully stop the virus from spreading within our own households.

Those of us who are immune-compromised or have children with disabilities are more susceptible to catching a virus so we must be extra cautious. The CDC did a study on the 2009 H1N1 flu outbreak and it was found that a higher number of kids with neurological conditions died from this epidemic than kids without. In fact, 68% of those deaths had an underlying medical condition; 64% of that group had a neurologic disorder! I am not trying to create a panic but I do think it’s extremely important to be educated and informed. Here are 5 tips on how you can keep your home as healthy as possible that you may or may not have heard before:

1. WASH YOUR HANDS!

Yes, the simplest things sometimes are the most important things. In my home, the main entrance is through the kitchen and as soon as we walk in the door, we wash our hands. No matter where we’ve just come from – the grocery store, a relative’s home, school, work – first we wash our hands. Anybody who comes over, I ask the same from them or offer antiseptic hand sanitizer that I keep right next to the soap. I’ve had a couple people say, “Oh, I washed my hands just before I left my house”. Really? That’s great. And after you washed them you touched your door knobs, car keys, car door & interior, and God knows what else...So yeah, please either wash or disinfect them now that you’ve made through my threshold, thanks!

2. USE YOUR ELBOW!

Well, actually the inside of your elbow a.k.a. the crook of your arm.  When you cough or sneeze, covering your mouth and nose with your hand is fine if you’re going to wash it right away but chances are you’re not. What you’re probably going to do is touch your phone, computer mouse, remote, drawer handle, door knob or shake someone’s hand. Then guess what? You’ve passed your germs on to someone else. I’ve never seen anybody open a door or change the channel with the bend in their arm. If you do, please take a picture and share that; I’d love to see it.

3. WIPE! WIPE! WIPE!

There have been studies that show remote controls are the germiest items in hotel rooms. I’m willing to bet your remote controls at home have never been cleaned. Neither have your cell phones, home phones or computer mouse. I take disinfectant wipes (Lysol makes them but there are other no frills brands that have the same properties and work just as well) and clean everything. I just go room to room and wipe down the things that we touch the most throughout the day. The electronic items I mentioned above; light switches; door knobs; cabinet handles; drawer pulls; computer key boards; video game controls. I’ve gotten into such a frenzy that before I realized it, the cats had been sanitized, too. They hated it but they did look pretty funny with their fur all stuck together like that. Ah, good times.

4. QUARANTINE!

After we found out my son doesn’t have half of his immune system I bought face masks so that if anybody in our immediate family was sick, we could protect him from our germs. We try to stay away from the others for the first couple of days until the antibiotics kick in. And if someone from the outside world is sick, they get locked out! Even the slightest hint of a possible cold is enough to block access to our home. Sorry, we love you, but ya gots to go!

5. VACCINATE!

This is controversial. I know there are many people who feel this will only get you sick, whether it be with the flu, Autism or other neurological diseases. Let me just give you the facts, as per the CDC, then you can make up your own mind.

Who should be vaccinated? Everyone, but especially people at high risk like children over 6 months; those with certain medical conditions that make their immune systems weaker like those with asthma, diabetes and chronic lung disease; pregnant women; and people over 65. Also, those of us who care for people who fall into this high risk category should be vaccinated.

When should we vaccinate? As soon as the vaccines become available so that a flu epidemic doesn’t have a chance to grow. It takes about two weeks for the vaccine to kick in so waiting until the virus is in full effect to get the vaccine is not ideal. You should get it when it becomes available so you’re protected at the right time.

Where do I get the vaccine? If you are being followed by a regular physician then that is where you should go. If you don’t have a doctor you can go to http://flushot.healthmap.org/ to find a location by you. There are also links on the main page to information on the different types of vaccines available.

Make sure that whoever is giving you the vaccine knows your medical history. For instance, the nasal mist vaccine is not safe for the groups I mentioned above. People with immune deficiencies probably wouldn’t be good candidates for any type of vaccine, either. I’m not doctor so please, PLEASE speak to a medical professional about all your medical history before making your final decision. You can find more about the flu and vaccines http://www.cdc.gov/flu/.