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!” 

Unlikely Advocates: How One of America's Most Influential Families Became Some of the Disability Community's Strongest Allies

Recently I finished a book entitled “Rosemary: The Hidden Kennedy Daughter” by Kate Clifford Larson. I was turned on to the book by my girlfriend Samantha Lebron. She knows that I love history, especially political history. When I first began reading the book, I wasn’t sure what to expect. The Kennedy family has been written about extensively. I thought this would be another look at the Kennedy family through the lens of politics, and, to some extent, it was, but it was much more than just a book about politics.

As I got deeper into the book, I realized the book was about something more. It was on a deeper level about the history of the treatment of people with disabilities in the United States. Although Rosemary Kennedy was born to one of the most affluent families of the 20th century, unbeknownst to her she would face prejudices not only from the outside world but even from some members of her own family. Without recounting the whole book which I highly recommend you should read, I will say that what happened to Rosemary Kennedy reflected attitudes about disability at the time.

The book does a great job of not only detailing Rosemary’s struggles as a young child, but it also does a great job of using her experiences to highlight the subhuman treatment of people with disabilities that was commonplace during that era. However, Rosemary can serve as an example of how the best characteristics of the human race are often seen during the darkest of times. Not every member of Rosemary’s family saw her disability as a thing that should be looked down upon. In fact, her sister Eunice would become one of the disability community’s most powerful advocates. It is through the work of the Kennedy family and their relatives that two of today’s most powerful and influential disability organizations are even in existence. Eunice took a special interest in a program known as the Special Olympics and helped transform it into what it has become today. If this was not impactful enough, Anthony Kennedy Shriver would go on to found Best Buddies International. For those unfamiliar with the organization, it aims to give people with Intellectual and Developmental Disabilities (IDDs) the chance to live fuller and more inclusive lives by increasing socialization and opportunities for growth.

In closing, it is this writer’s opinion that the Kennedy family, a family who is often associated with heartbreak and tragedy, needs to be remembered not only for what they have undergone but also, they need to be celebrated by people with disabilities more than they already are. Without the Kennedys the disability rights movement may have taken longer to reach the goals it has so far.

Until next time, your friendly neighborhood super advocate, 

Jay

The Disability News Network

           The news in America has become constant recycling of all the same stories. With the advent of cable news, the news is on 24/7 on some channel or another. You have three major providers, Fox News, CNN, and MSMBC. Along with these providers, you have local affiliates of ABC, NBC, and CBS. But all these channels tend to tell the same stories. Now there is a new type of news network out there.

 

            The Disability News Network, or DNN, is a news network run by DST, Developmental Service Trainers, in Ocala, Florida. DST is a personal care company, which uses the radio station to provide a voice for people with disabilities. Currently, they do not broadcast all the time and are in the process of re-vamping their broadcast schedule. Even though they are based in the U.S., now they only have 1200 listeners. Most of their listeners come from China and Switzerland. Although this is a young radio station, it only has been around three years; it provides an excellent outlet for people with disabilities. Below is the link to the website where you can find the live feed to the station. I am in preliminary discussions with DNN to host a radio show. Future posts will contain more details. Thanks for reading, and until next time, fear nothing and regret less.  

CRPD

       As the 11-month of the year begins, we also mark the end of a month-long celebration. October was Disability Awareness Month. Disability Awareness Month is designed to acknowledge all forms of disability, everything from emotional and behavioral to mental and physical. My university recently even did an exhibit entitled “Allies for Inclusion: The Ability Exhibit.” This consisted of a variety of stations at which visitors could experience an aspect of being disabled. In October, the events that were held throughout the country demonstrated a great effort in the disability community to bring awareness to an often forgotten minority. However, there is a much greater task at hand.
       Rarely do I call my readers to action, but this time I am asking you to read what follows and use your political voice to make a difference. On November 5^th and 12^th, your voice can be heard. The U.S. Senate Committee on Foreign Relations is holding hearings on whether or not to ratify a treaty for persons with disabilities. The treaty is known as the “Convention on the Rights of Persons with Disabilities,” an international treaty that needs the United States’ support. On December 5^th, 2012, it only fell five votes short of a supermajority known as ratification. As these Senate hearings approach, I urge you to not only email your Senators but also place a phone call to their offices. To re-affirm your support for people with disabilities. 
       Why I should support the CRPD:

·      57 million Americans with Disabilities

·      5.5. Million disabled American Veterans

·      1 billion people worldwide

·      Would be joining supporters such as significant faith groups, the Chamber of Commerce, American Association of People with Disabilities, and many other groups in America/Worldwide.

·      No additional cost to the American taxpayer.

·       the treaty has been reviewed by Republican and Democratic Attorneys General and by past Counsel to Presidents. They confirm that it does not threaten the sovereignty of the U.S., nor does it require any new legislation to comply with the treaty.

· Disabled individuals can contribute and be functioning members of society. As well as being suitable for American commerce. 

If you still need a little bit more background, then here is the history of the CRPD. The CRPD was first pushed forward by Mexico and then taken charge of by the country of New Zealand. For the first time in its history, the U.S. is not at the forefront of an International Movement, but it is late to the party.
       For a country with such sweeping legislation (such as the American with Disabilities Act), it is a shame that the CRPD already has 158 signatories, and the U.S. is not on the list. Please support the CRPD so that the American Disability Rights Movement can be heard in the 21^st century and not just known for something done over two decades ago.

 

 

 

 

Footnotes:

1.)http://power.aapd.com/site/Calendar?id=100081&view=Detail

Government Shutdown

So I've written a lot about disability issues, and while that is my main focus for this blog, I thought I would expand it a little bit. To show you (the reader) that while I, as a disabled person, am very aware of issues that concern the disabled community, I am more than just a disabled person. Therefore, this blog post is going to talk about something relevant to all of us as Americans--the recent Government shutdown
       Now I realize that you guys are probably sick about hearing about this from talking heads related to media on both sides. Because of the advent of cable T.V., the news media doesn't work hard, but they repeat the same thing over and over again. They treat us like Five Second Tom from Fifty First Dates.  Five Second Tom is an individual that we meet in the care facility with a five-second memory and re-introduces himself every five seconds. The media treats us, the American people, as if we don't comprehend what they tell us. As a result of this perception of their audience, they are forced to reiterate the same things repeatedly. The government shutdown was no different. 
       Every second, you would hear either major media network describing what was happening as if the American public wasn't aware. However, (remember the media stated last night) America has gotten to the point where we ignore what goes on in Washington because Washington has not become the little boy who cries wolf. Every other day there is a "crisis," and in the Obama Administration, it's been the Benghazi scandal, the IRS debacle, or the "fiscal cliff fiasco." Everybody blames Obama for the fiscal cliff fiasco while playing a part with his "Obama care" idea. I only call it Obama care because the majority of the nation calls it that now. It's called the Affordable Health Care Act. Obama is not the only one that caused America to be where we are at financially. 
       Who do I blame? The answer is simple. I blame our culture and our society. I don't blame capitalism. This is not a communist rant or a push for socialism. It is a call for reason and logic! Let me explain, and the best way I can do that is by using a note that I recently wrote on Facebook in regards to a situation my University is going through. 

 "Okay, So I've never been a fan of authority. I always do what people tell me I can't do. I guess it comes with being not your average gimp. Lately, there's been a lot of stuff being said about how our University is a horrible place, and don't get me wrong, I've had my moments when I disliked certain things, but perhaps the federal government can learn from the hard decisions that the University has to make right now. The fact is, no one can spend more money than they make. I've learned that the hard way. No university, government, or person is immune. A similar issue to the one our University is currently facing occurred at my former school several years ago. At the time, I was bitter because they closed the handicap personal care program. Back then, the president presented similar economic facts to the ones Dr. W offers below. Difficult choices had to be made, and they have to be made now. By no means am I an advocate for everything my University does? I've had my battles with them, but I have this to say as far as what's going on now.

     Many people have been complaining about here, and some of their complaints may have been based on fact, but some, have not. When people are involved in a situation, they do not often take time to look at a situation's facts. They/ only tend to see the facts that benefit our point of view. How can we bitch at the government for overspending when we are not taught as a society that overspending is not okay. The University has to make difficult choices right now. They are not ideal, but unless we know all the facts, who are we to judge? Just saying.  Below is an email that every university student got. Most of you probably ignored it because we tend to like to complain rather than deal with the realities of situations. I thought I would include it below. Ms. W and the administration will try to put the most positive information out there, but at least they are presenting more facts than most people that I know who talk about it. 

   

 

Dear Students,

 

As our academic leaders continue to explore alternatives to the faculty retrenchment proposals in the Operations and Workforce Plan, I am writing to update the critical discussions on our campus. I believe the open flow of accurate information is the best way to reach the decisions we need to make together about cutting our expenses, increasing our revenue, and positioning our University for a healthy future.

 

Through talking with numerous student groups over the last several days, I learned that our students had heard a great deal of misinformation about the proposals and the impact of possible faculty retrenchment on their education.

 

To clear up this misinformation and calm any fears that the misinformation has created, I want to share the following:

 

-          The Operations and Workforce Plan is a collection of proposals. It is a starting point for the process of finding the best possible ways to balance our budget. When a specific course of action is chosen – to save a significant proposed for a moratorium or to act on a proposed cut, for example – I will share that information with the campus community as soon as possible.

 

-          Our academic leaders are working with department chairs and other faculty to ensure that cost-cutting has the least impact possible on faculty and students. This process will continue throughout the current academic year. Already they have made good progress on determining alternatives to eliminating faculty positions.

 

-          All University students will be able to complete their degrees, even if their program is placed in moratorium or faculty positions are eliminated in their department. 

 

-          Our Art Department is not being eliminated. Art is our flagship program here at our University and a significant part of our identity. The only proposed cuts in that area are eliminating five and a half temporary faculty and one regular faculty position, which is vacant, out of an extensive department.

 

-          I am very hopeful that a way can save music and music education as majors. Music is an essential and valued part of our campus culture. However, even if it can't continue as a major, music will continue to be taught and performed at the University. We will have a band, bagpipes, and ensembles.   Students currently enrolled as music majors will be able to complete their majors without interruption.

 

-          Cost-cutting, including reductions in the size of our faculty and all other employees groups to bring their size in line with our smaller enrollment, is unavoidable. The University will spend $7 million more this year than it takes in through tuition, fees, state appropriation, and other sources. Next year, we will spend more than $10 million more than we receive if nothing is done to adjust our costs. We don't have enough money saved in our reserve to continue outspending our revenue beyond this fiscal year. 

 

-          Our state appropriation is the same as in 1997, but those dollars have far less buying power. Just as the cost of your phone plan or favorite foods periodically go up, the items and services that the University must pay for becoming more expensive over time. Our appropriation would need to be 42% larger today to pay for the same things it did 16 years ago.

 

 

And finally, you are free to express your opinion about the Operations and Workforce Plan proposals. I encourage it. Your voice and suggestions are valued.

 

If you feel moved to participate in a demonstration, that is your right, and I respect it. Another productive way to express your opinion is to join the conversation on campus about our budget challenges. The next campus-wide Budget Forum will be held Monday, October 7, from 1 to 2:30 p.m. in Pogue Student Center - Multipurpose Room A. My next Listening Hour also will be Monday, from 3 to 4 p.m. in the Crawford Center Conference Room. Your questions and input are welcome at both of these sessions. You also can share your ideas for reducing expenses and increasing revenue on our online Operations and Workforce Suggestion Forum using the link on [webpage].

 

This is a difficult situation that demands that we face our challenges directly. Solutions to fix the continuing budget imbalance created by reduced state funding and lower enrollment must be creative but realistic. We must act decisively this year for the long-term good of the University and you, its students. I continue to be overly optimistic that together we can and will achieve the savings and develop the new revenue sources needed to keep our University strong and make it even stronger.

 

Best regards,

Dr. W"

       The above note is a microcosm of a lesson that both parties need to learn. If one who makes 500 dollars a week, they can only spend 500 dollars a week. The government is acting like a college kid who gets all those credit card offers in the mail. They think just because we're allowed to spend into debt that it means we should. Now I am not an idiot. I realize that this is not a Republican or Democrat issue. As I said before, it is a societal issue. In the last 2 or 3 generations, we have not been taught the value of saving and being responsible with our money. I am a perfect example. However, until we learn this philosophy, we are doomed to repeat the same course no matter what part is in power. 
       As far as shutting down the government to get your point across, no matter what side you are on, I think there is a crucial point or philosophy that the American people have learned from this shutdown or should if they haven't. These officials there in Washington, no matter what party they represent, were put there by us. We need to take some responsibility and remember what special privilege we have on the nation and how we have to change the system. We could act like my friends on Facebook and continue to bitch about the problems this country has, or we could radically alter the system. Whether it be radically transforming it for fiscal change or disability/women's rights. If we let the system live as it always has, we will always get the same results. 
       Take, for example, the bill they passed to re-open the government as of 12:01 a.m. August 17. They only passed a bill that would give us funds for 90 days. They didn't make any significant changes. They are still squabbling over the same decisive issues that they have been for weeks now. Because ideology thinks they are better than another one. I do have some fiscally different ideas from others, but this is not the place nor form to present them. If I did, I would be like every other talking head on T.V. trying to present their side as the "correct" one instead then trying to find the solution. This goes way deeper than whether or not I represent an elephant or a donkey. My political party should not matter. As our first president said, "A nation should beware of political parties" because they will get us in the mess we are in now. What should matter is not always being right all the time because not everybody will be happy with everything all the time. So this is a call to Congress and Obama, but most of all, to the American people. It is time to stop telling us what you want or what you're going to do and do something about it! Put your ego aside, and remember you live in a country with 316,869,000 people. It is not just about what YOU want, but it is about compromise because no one can be king. We fought a war because we did not want to be controlled by a king, so quit acting like one side is right, and the other side is wrong.

       I'm getting off my soapbox for now, but the above should demonstrate that no matter your physical ability, one could have a voice or opinion about critical issues. People often see those with disabilities as "passive citizens." Well, this piece should indicate that some of us are not passive at all.

 

                                

 

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.