The Personal Care Crisis Continues: How a Lack of Funding for Home and Community Services Reinforces Larger Problem Within The Disability Community

To all my regular readers I want to say welcome back and thank you for your continued support. To anyone reading this blog for the first time welcome, please make yourself comfortable and grab a seat or a parking space for your wheelchair and a beverage and enjoy what is to come.

In January 2014 I wrote a blog entitled “Aide Care System; The Hurtful Loop Holes” I have included the link to this blog at the bottom of this piece. That piece discussed a crucial problem when it comes to aide care that people with disabilities still face in 2023, however one area it did not cover in great detail was the lack of funding for aide care waivers. The waiver goes by different names depending on the state you live in. I currently live in Florida. Here the waiver is known as the Home and Community-Based Services Waiver. The waiver in theory like all the other waivers started out with good intentions but to be quite honest good intentions don’t pay the bills. In my previous blog on the subject, I talked about federalizing the home healthcare system, however, even if that were to happen there would still be a funding issue. Don’t believe me? Let me explain. 

Right now, I am honored to be a first/second-year fellow with FL-SAND (Florida Self-Advocates Network’D). Thanks to my involvement with the fellowship I have the opportunity to go to Tallahassee on March 13th and 14th for what is known as Developmental Disabilities Awareness Day. This annual event allows those with disabilities to meet with elected officials at the capitol and discuss crucial issues that impact people with disabilities in Florida. FL-SAND and its primary supporter the Florida Developmental Disabilities Council (FDDC) are once again encouraging legislators to put more funding into the Home and Community-Based Services (HCBS) waiver or as it’s known in the disability community the iBudget waiver. The need for the waiver to be funded is not a new concept nor is it exclusive to Florida. There are two questions some of you may be asking: where is the money going to come from? However, perhaps the more eye-opening question/comment I have honestly heard from people is, “Shouldn’t people with disabilities be happy that they are alive or slowly improving like they are, I mean they have the ADA or the Americans with Disabilities Act?” 

The above comment which was actually made to me several weeks ago shows that there is still a fundamental problem that needs to be addressed. It is my opinion that programs such as the iBudget Waiver receive such little funding and attention not only because we are several trillion dollars in debt but perhaps more importantly because of the way society, for the most part anyway, still has a 19th-century view of disability. That being said the only way we are going to increase funding for such vital programs is to continue to work to give people with disabilities a proper seat at society’s table. Yes, we have such documents as the ADA, but I argue that a piece of paper or law is not enough, however, let me give you one other piece of evidence that reinforces the argument above. 

In order to further prove that people with disabilities still occupy a literal seat at the back of society’s bus, one only has to look at the amount that personal care workers are paid. The pay does not equal the work required and it shows that the disability community is being marginalized to make a profit. My night aide during the week only gets paid $14 an hour. Last time I checked the minimum wage for personal care workers was supposed to be $15 an hour. I am curious to know what the agency charges. It would be safe to assume that they charge a whole lot more than $14 an hour. If I was guessing I would put the figure in the high 30s. I plan on investigating the issue further, and thanks to my fellowship I know the perfect place to start my investigation. I plan on contacting the Agency for Persons with Disabilities (APD) in Florida to see why the state mandate that was passed on July 1st of last year mandating a minimum wage of $15 an hour for all Direct Service Providers (DSPs). The first question I will ask is, “is there a reason agencies aren’t being forced to comply with the mandate?” Depending on the answer I receive I will follow up by asking them “if agencies have not complied are they given a grace period in order to comply? If so what happens if they do not comply by the end of said grace period?”

In closing, I know this is one of my longer posts, however, I feel the issue still needs a great deal of attention. While I agree with my fellow self-advocates that change is necessary, as I have argued throughout this piece the funding crisis highlights a less talked about issue. Whichever side of the debate you fall on there is no argument that this cannot be solved overnight. It will take the voices of the voiceless continuing to fight, in order to make the greatest change. 

Till next time, your friendly neighborhood super advocate has these final words, “no one will change your life but you, continue fighting fellow advocates and allies!” 

Hey! Down here!

So, it's been nearly a week since the last time I posted here.  This is not to say that there haven't been things bubbling around in my mind, just that I've been a little busy.  Since the last time I wrote, I've been busy promoting the blog by creating a Facebook page.  You can now show your support for the blog and disability advocacy in general by visiting The Voiceless Minority on Facebook.  I've also been busy continuing to write my first full-length screenplay.  Now, however, it is time to get back to the meat of things. 

       I've written extensively about several different issues, including how disabled people desire to be treated equally but still use the "Disney World" principle, as I like to call it, cut lines, etc.  While I've said that, in most cases, disabled people do want equality and strive for it legitimately, it does not mean that they are always supported in their efforts.  I've also written about social acceptance and disability.  However, this past week, this issue has come up twice.  The issue has not arisen in my personal life, but I've had friends and acquaintances mention it.  Therefore, I thought I would write this blog. But I would take a different approach. 

       I have mentioned that legislation cannot legislate acceptance, and while I know that this is not my view alone, a young woman powerfully drove this point home in a poem. Sarah Smith is a young woman who has the same disability that I do, cerebral palsy.  I first met Sarah several years ago.  We both attended the same university.  I am not going to mince words. Sarah and I haven't always gotten along. Still, we've grown to respect one another because of our drive and determination to prove that, although we have obstacles that society calls disabilities, these obstacles do not define us.  What follows is the poem that this driven young woman has written.  It is used here with her permission.  Thank you, Sarah.

 

"I was born too early

small, fragile, and weak

they thought I would not survive.

But along with my will to live,

another token was bestowed upon me;

one that I didn't want to ask for or need.

 

"What is this token," you ask?

Well, the answer is quite simple.

For it is a cloak

of invisibility.

 

I carry it with me

throughout my life.

It was given to me by society

and shallow close-minded souls,

who believe my disability

defines me.

 

They walk right past me,

never bothering getting to know

the person beneath.

Or worse yet,

they pretend they care,

but really,

I'm just a pit stop,

until something better comes along.

 

To those cowardly people,

I say, "your loss."

You are missing out

on meeting someone

who is loyal, honest, and loving

through and through.

 

For those who have taken the time

to look beneath the label,

thank you

for giving me a chance

to live and love

undefined and free."

 

 

 

       Being nonobjective for a second, I must say that I love the poem.  I may not agree with everything that Sarah has ever said, but I was stopped dead in my Facebook clicking when I read this.  Back to objectivity now, if one indeed looks at Sarah's words, they cannot help but be struck by them.  Sarah brings to light a well overdue point.  Not only are disabled people often brushed aside like second or even third-class citizens, but they are also often unwantedly pitied and patronized.  We, as a group, is either exalted as heroes or we are wallflowers.  People rarely take the time to know us as people; instead, they get to see the machine or device with the person in it. They do not see, as Sarah says, a person who is loving, honest, and loyal, instead they see someone to feel bad for or to judge.  Sadly, this not only occurs in the general public, and the realm of academia, but it often occurs in social settings.  By this, I mean, we are not only looked down on by waiters in restaurants who glance at our companion to give our order, and professors when we reach the higher levels of education, but mainly we are looked down on by our peers.

       Now, when it comes to social invisibility, I refer to two ideas.  One is that we are not perceived to be capable or worthy of being in a romantic relationship.  While this idea is most infuriating to me, being in my late twenties and being human, I do feel that this is secondary to the second idea.  It is even more frustrating when our peers brush off our intellect in regular conversation and everyday interaction, and they brush off our ability to behave like them.  How often I hear the words, "You like to do that, you're disabled," or "But you're in a wheelchair," or "That's weird, I wasn't expecting you to act like that." It is almost like we are visible and invisible at the same time.  Well, it is time that the disabled community, as a whole, is recognized for who we are as people, and not just for the disabilities that we have to overcome.

I Can Write but It’s Time for You to React

All men were created equal. This is what it says in our Constitution. Discounting the irony in which it doesn’t mention the 3/5 slave’s clause. This is otherwise a good concept. It essentially implies that no matter one’s race, creed, religious belief, nationality, or any other distinguishing characteristic in America, they should be granted an equal opportunity. I have written a blog, which discussed a little bit of a piece of landmark legislation known as the American With Disabilities Act. However, today while doing some early morning reading, I was forced to ask myself this question, “Have we come all that far?”

       This year on July 26, The Americans with Disabilities Act will celebrate 23 years. It is almost a quarter-century old. It’s almost at the point where it has to make a significant life decision and stop relying on mommy and daddy but has changed for people with disabilities since the Act? My argument is that on the surface, improvements have been made, but legislation cannot legislate a cure for ignorance.

       This morning I found myself being proactive as my aide was sleepily frying me some bacon. I was cruising several news sites. Yahoo is set as my homepage, but to get a fair and balanced view of what is going on, I purposely look at both Liberal and Conservative sites. However, I did not get very far. Those of you familiar with Yahoo’s format know that there are often several stories along with a slider on the page. Immediately, the first story this morning caught my eye. The original title of the article by Jordana Devon was “Second grader in wheelchair set apart from classmates in a school photo.” Myself being in a wheelchair, I was intrigued by the article. The first thought that went through my head was, “I can’t be reading this right! This is not the 80’s anymore! We have One Direction and not NKOTB on the top of the Boy Band scene. No way can say what I think it says.” So to make sure I was reading it right, I clicked on the article. Unfortunately, I was reading the article correctly.

       In an extremely well-written article, the Yahoo Canada blogger lays out a disturbing story. Jordana tells a story of a seven-year-old in British Columbia who was set apart from his classmates when taking a second-grade class photo. The little boy named Miles Ambridge can be seen in the picture, trying to strain his body to be a part of the group. Jordana goes on to explain Miles’s disability as Spinal Muscular Atrophy. As she said in her article, Miles had been confined to a wheelchair ever since he was little. The report then gives readers the viewpoints of what Jordana would display as “heartbroken parents” in which the parents demanded a re-shoot of the class photo but were given the usual rope-a-dope-it’s-not-my-fault-response. It’s the other guy’s fault by the school and the photography company called Lifetouch. Before concluding her article, Jordana asks a very poignant question, “What do you think: Has this incident been blown out of proportion, or should the photo company be ashamed for its placement of Miles in the class shot?” Speaking from a disabled person’s point of view, I will say exactly what I said on the web page.

As a disabled individual, I do not believe this situation I being blown out of proportion. It is not the 80’s anymore, and we have legislation that guaranteed the disabled community to be given equal opportunity. Are we so messed up as a society that we teach our children so early to ostracize those different from us? By the looks of this photo, it is not the children who need to be in school but rather the adults. As Jordana quoted Miles’s mother as saying, “Kids can be cruel, but adults should know better.” Forgive me for saying so, Mrs. Ambridge, but yes, they should, but sadly they do not. The photo that your son was a part of clearly indicates a misunderstanding of difference. A misunderstanding that legislation will not correct. I am genuinely sorry for what you and your family were subjected to. I hope this incident does not jade you because while there are those in life who are intolerant of differences—those of us who are tolerant of differences far outnumber them. I am sure Miles is a great person, as can be seen by his beaming smile. I live in Northwestern Pennsylvania and would love to talk to you and your husband, along with meeting Miles, if at all possible. What you guys have gone through is ridiculous and sad, but I applaud your response to the situation whole-heartedly.

       As I said in my posting about the Yahoo article, what low Miles and his family had to go through is appalling, but it happens more frequently than one would like to admit. That being said, if Miles’s situation isn’t bad enough, there is yet another story I heard about this morning that enrages me even more. When I first heard about it, I could not even begin to blog because I knew if I did, I would be angry and vindictive. Also, my blog’s purpose would be defeated by my anger. After several hours of reflection, I was able to talk about the incidence that I watched and not exploded.

       As those of you familiar with Yahoo who are aware, if you read one article, they often have videos or links to other similar articles embedded within the item you are reading. Jordana’s article on Miles and his situation were no different. Near the end of the article was a video link that said, “Teens Steal Man’s Wheelchair On Long Island, Brag About It.” After reading the article on Miles, needless to say, I was in a mood to be aggravated. So I clicked on the video, which can also be found below. The video came out of Niagara County and a news organization there. It was of a News broadcast where a News Anchor was beginning a  story. Superimposed behind her was a picture of a wheelchair with the words “Wheelchair Stolen” underneath it. Quickly they cut to the main level. A man named Vincent had his wheelchair stolen from his home by a pair of 14-year-old boys. The boys, after taking it for a “joy ride,” admitted to dumping the heavy chair in a nearby bush. Unfortunately, it is believed that someone saw the chair and unsounded with it. This leaves Vincent in a predicament. Vincent is now forced to go around in a manual chair and be pushed around by his mother and others.

These two stories mentioned above not only irritate me beyond belief but re-emphasize the importance of education and advocacy. I am well aware that no matter where one goes, they will find ignorant people, but only through blogs like mine are advocacy groups such as United Cerebral Palsy. T.V. shows like Teal Sherer ‘s “My Gimpy Life” that a better understanding of disability will hopefully one day come to light. My goal in re-telling such horrible stories like this is to spark, you the reader, into action!

 As a disabled individual, I can be outraged and say how messed up these scenarios are, and it is my responsibility as a writer to do so. Still, you, as a reader, have responsibilities as well. It is only through acceptance of differences and your outrage at these situations that little boys like Miles may find a day where they are no longer ostracized for something they cannot control or help. Miles may be young and innocent now, but that innocence will not last long. He will one day realize that he is different, as many of us do. However, if society has changed even just a little bit by the time this young man reaches that age, then maybe he will not be ostracized for his differences but possibly celebrated. Then maybe young boys will think twice before stealing somebody’s lifeline to independence. I don’t preach very much, but that’s some food for thought.

 

 

Footnotes

1.) http://ca.shine.yahoo.com/blogs/shine-on/second-grader-wheelchair-set-apart-classmates-school-photo-173243067.html

2.) http://mygimpylife.com/

Everyday Trials

According to my friends, I am a twenty-six-year-old male who is funny, charming, and intelligent. Apart from these traits, I do have one that makes me stand out from the crowd. I have a disability. It is known as cerebral palsy. This is not a life-threatening disability, but it does limit my movements and other activities in my life. I am currently going for a master’s degree in education and hold two bachelor’s degrees, one in history and one in the theater. By many people’s standards, I would be considered well on my way. However, there are still obstacles I must overcome.

As I’ve stated before, in 1990, a piece of legislation was introduced known as the Americans with Disabilities Act. This Act attempted to eliminate as many barriers to inclusion in society for people with disabilities as possible. It specifically focused on five areas, which included making it easier for people to seek public education, making it easier for people to get into public buildings, improving communication opportunities, improving access to the job market for people with disabilities, and the broad-sweeping term “miscellaneous provisions” ¹. Because of this Act, life for persons with disabilities has improved tremendously. However, federal legislation cannot influence one aspect of life, that of social interaction and acceptance.

From an early age, a child is interested. Babies explore their environment, testing and prodding the world they have been born into. Humans are not born with any preconceived notions about one another; I believe that they develop them based on the environment and society they are raised in. In my twenty-six years in this great country, I have never been judged by a five-year-old. It is more often their parents that do the judging. The five-year-old is merely curious when he or she may ask their parents, “Mommy or Daddy, why is that person in a wheelchair? What is wrong with them?” These questions do not bother me. The parents respond that baffle me. Several months ago, I was at a local mall when the same situation occurred, and I distinctly could hear a parent react to the same question with the following, “Honey, be quiet. Don’t ask that. That’s rude.” Is it rude? Or, as my friend said to me and as I truly believe, have we as a society become so comfortable walking on eggshells that we are afraid to ask questions because we might offend someone?

In my head, I would much prefer the parent’s response to the child’s question to have gone as follows, “I don’t know, why don’t you go ask him?” The ability to question is what makes us human. It is how we learn. But we are taught from such a young age not to question and not know that bias and fear of difference are ingrained in us by the time we develop into young people and adults. This thought can be seen on my college campus.

I currently go to a school in the Northwestern part of PA, and it is a reasonably good school. But, it is here where the idea that society has become so politically correct that it would rather be ignorant than knowledgeable has been reinforced. There are three key areas which disturb me. The first of which can occur when I am merely rolling around on campus with friends. It’s gotten to the point where we make a game out of counting how many people stare at us. Let me explain first by saying, typically, I hang around with females. Not due to any other reason, except I tend to get along with them better. Most of my friends are “friends.” There are only two or three that I would like to date, but somehow everyone who sees me with any of my friends either looks at us like, “Aww, I feel so bad for that young man and what an incredible person that girl is for helping him.” Or “I wonder, are they dating?” Forgive me for being so blunt. It got so wrong when my friend and I counted thirty people staring at us in two hours. Maybe I missed the memo, and maybe staring is the new en-vogue thing, but I don’t recall staring at every other person I roll by as if they were something I have seen before.  

The second thing that bothers me has to do with communicating with people daily. Most of the people I interact with can tell that I'm reasonably intelligent within the first few minutes of our conversation. I do not go around quoting the dictionary, but I do have a large vocabulary. I say most can tell that I'm reasonably intelligent. The people that make me want to pull my hair out are those people that make me feel as if I am mentally challenged just because I am in a chair. My favorite example of this occurs nearly every time I go out to a restaurant. Let me set the scene: I sit there with a group of friends or my family holding a conversation and looking over what I want to eat when the waiter or waitress comes by to take everyone's order. They will go around the table, and when it is my turn, they tend to look at the person next to me for my order instead of me. If that does not happen, they tend to raise their voice and say the following, “well, what would you like, dear” (in a booming voice). I am not deaf. I do have terrible vision and, by my admission, am a really bad driver and run into more objects than I care to admit, but not being able to hear is not a flaw of mine. Indeed, some say that I hear way too well. When someone speaks at me like I am completely deaf, I am often tempted to respond with a snotty unsuspected comment. I’ve only done this once or twice, but let’s say it catches them off guard. Every time one of these exchanges occurs, I am baffled and more and more frustrated with society. Just because someone has a physical disability does not mean they are deaf and mentally deficient. The above two examples are annoying and frustrating when you are disabled; however, they pale compared to my third pet peeve.

I am sure others can relate to me when I say that family and love are human desires regardless of physical appearance or ability. I, as a disabled individual, am no different. I am twenty-six, pretty successful academically and intellectually, making people laugh, and I have a decent personality. The one thing I don’t have is someone to look past my disability and love me for me. Some who may read this might say not everyone in their twenties finds someone, and with that, I fully agree; however, it is magnified ten-fold when you are in a wheelchair or have a disability. Not only does it seem one gets snubbed on the relationship front, but also many of the most common social interactions, the able-bodied community, from my perspective, does not know how to or feel comfortable with integrating the disabled community. A key example will be if I ask someone to go and do something. They will often give me a cursory sure, we definitely should, but then inevitably, they will blow me off for some reason or another. Don’t get me wrong. I understand that this is a problem related to my generation and the able-bodied community interaction with disabled individuals. But I am sure if you ask other individuals with disabilities, you will find that it tends to happen a great deal more frequently to individuals with disabilities than their able-bodied counterparts.

In the same vein, whenever an individual happens to catch my eye on a romantic level, more often than not, I am rejected and not for your typical reasons. The most common sense I get is, “you’re a great guy, but I can’t date you because you’re in a wheelchair.” Not only is that reason baffling to me, but it is also infuriating. I can’t tell you how many girls I played an emotional therapist or boyfriend in my life. Still, as soon as I want actually to pursue something on a romantic level, they finally realize, “Oh, wait for a second, he’s in a chair.”

All my rantings may have come off as complaining. However, I hope they haven’t because my purpose in writing this article is to bring to light an issue that many people are aware of but choose to ignore or make light of. Society in the twenty-first century is no different than it was in earlier times. Yes, we are now not dealing with bus boycotts or million man marchers, but it is clear that we are still fighting a silent battle. The disabled community and people who are outside your typical WASP America, in general, are fighting a war against difference. The disabled community’s voice was heard loud and clear in 1990, but it is about time our voice was heard once again.  

 

Footnotes: 

1. http://www.bu.edu/cpr/reasaccom/whatlaws-adaact.html