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!” 

Come on America: Those In Glass Houses Should Not Throw Stones

So I didn't write a lot in 2014 yet, but I promise that will change. This posting will be my 40^th blog. It is amazing what this blog has grown into a little over nine months.

            Nine months ago, I was angry and bitter and didn't know how to deal with it. They say life has a funny way of working out. I can't say that I would say that in nine months, I found my voice or at least the beginnings of it. As this blog says, I have learned a few things over the past little bit. I've written about comedy, I've written about political issues, and I've written about disability stereotypes; however, this blog will be a little different.

            Maybe it's because of how I was raised, but I have developed a spirit of a fighter that is both a good thing and a bad thing. As I sit down to write this post, in fact, I still remember the latest fight I had with my parents about being self-reliant. Without boring you with the gritty details, let's say we disagreed on how self-sufficient I should be at this point in my life.  My fight with my parents had nothing to do with a disability, at least on the surface; however, it got me thinking about a disability community problem.

            I've read a lot lately since graduating from my master's program in early December of 2013. I don't know whether it was intentional or not, but many titles have been related to making one's destiny. The last book I finished, I am Malala, was a highly publicized book about a girl shot by the Taliban in Pakistan to speak up for girls' educational rights. That book not only blended history and culture, but it struck me on a personal level. The circumstances Malala had to overcome put her in extreme danger every day. Regardless of that danger, she still stood up for what she wanted.  She knew no one else was going to give it to her unless she proves herself.

Similarly, A Bold Piece of Humanity, by Bill O'Reilly, discussed the controversial commentator's belief system and how he had come to reach those beliefs. While some of Mr. O’Reilly's political views may not sit well with some, the striking thing about this book was that like Malala; he did not rely on anyone to hand him success. No, he just took it.

            What does this all have to do with disability, one might ask? Well, it is simple. I've noticed lately, and I include myself in this generalization as well, that most people with disabilities let external forces control their lives. Often they feel trapped by circumstance, so we do not complain when our aide care is sub-par or something doesn't get done in a typical fashion because we are disabled. No, we accept it as our reality. Well, the above two books, along with something my father has been trying to tell me for forever, have finally sunk in.  Hard work isn't easy. I will use a parable from a well-known book for those of you who need it put simpler. Whether or not you believe it that Jesus of Nazareth is God as I do, the Bible does have one exciting thing that everyone can live by. Give a man a fish, feed him for a day, teach a man to fish, you feed him for a lifetime. This is not a wealth criticism or even a social criticism; instead, in this case, it is a disability criticism.

            I am criticizing those like myself in the disability community who often let their circumstances define their lives.  Yes, our lives may be challenging, but our obstacles are no different than anyone else's. We are no other than a single mom of four that I know who busts her ass every day and sometimes goes without to help me and make her kid's lives better. We are also no different from a 49-year-old man who goes to work every day and doesn't smoke a day in his life but ends up getting cancer at 50. He still must get up, go to chemo, and move on with his life. We are no different from my Dad, who was perfectly healthy a year ago and is now fighting every day to keep his spirits up and keep moving towards his retirement dream. I know that was long-winded, but I do have a point.

            Disabled people think that because we rely on other people so much, whether we have a physical or mental disability, we are not in control of our lives. I'm here to tell you that our lives are what we make them, no one else.

If we do not have much physical control, then we can demand high expectations of those who do have biological control over our lives. Disability is not a limit, just a challenge. Quit letting it limit you and start challenging it. Your experiences will be better in the short term, and the world will be better in the long run. 

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/