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!” 

Aide Care System; The Hurtful Loop Holes

 
So the New Year is just fifteen days old, but already I can tell that this year will be different. That being said, I must write about a significant issue that has consumed my life for the past six or seven hours. Today I was informed by my personal care agency that one of my care workers could not work due to certain issues. On the surface, this seems like a non-issue, but it turned out to be quite a large one.

            For those that don't understand the aide care system, let me backtrack a little. I'm not aware of whether I have mentioned that I live by myself in previous blogs. I live in a small college town in the Northeast, which has a college that caters to physically disabled individuals; however, college services are only available if you live on campus. For the past three years, while completing my graduate work, I have chosen not to live on campus. Along with that choice comes several challenges that have nothing to do with academics.

            In the state I live in, there are three categories of options for those disabled people who do not wish to live with their parents. One can either live in a nursing home, a group home, or independently using what is known as an independent living waver.  Although I have chosen the third option, the independent living wavers, let me briefly outline the other two options before going into my choice.

            There are those outside the disabled community, and even those in the disabled community that has preconceived notions about what the nursing home or group home setting would be like. However, some of these perceptions are misinformed. There are nursing home and group home environments that are very restrictive. In the typical group home or nursing home environment, an individual pays rent with their disability check or through a family member, trustee, or guardian. The amount that the individual pays is used for various purposes, including housing costs, daily meals, and aide care costs. In most situations, residents are provided with three square meals a day cooked by the staff. They do not have to worry about their care needs, not being met because there is always staff available.

In some cases even, individuals are given a portion of their SSI or SSD check back to spend as they wish. Critics of this system suggest that the care quality is not always up to par. Often these facilities are either understaffed, poorly funded, or a combination of both. While the residents do not have to worry about their care needs being met, their care needs are often completed to the bare minimum, and extras such as specific grooming tasks may be neglected or done in a half-assed manner, if at all.

            The second option is a version of the group home/nursing home, which I like to call the group house. Personal care agencies often run these, and they are places where two or more individuals with disabilities or physical care need to share a residence. It is not like a group home in the traditional sense in that there are not 30 to 40 residents. Instead, these types of environments typically house three to eight individuals. Three to five attendants usually staff these facilities. These facilities provide the best of both worlds; in my opinion, however, they are limited in that they have not yet become the norm. Usually, people are forced to choose between a nursing home and the option I chose.

            I chose to live on my own using the independence waver. The waver in and of itself is a good idea, but it needs some serious retooling to be effective. There are two categories on the independence waver; one can either be a consumer who hires their aides, thus engaging in participant-directed care, or one can use what is known as agency model directed care. I know I have long explained the problem than usual, but I feel this is necessary to explain the problem I had earlier. I have tried both participant-directed care and what I thought was agency model directed care. I have found that in theory both of these systems are good and well designed but the practice is much different from theory.

            As a disabled man, I still cannot understand why a system designed in theory to help make me independent in practice takes every shortcut to limit my independence. Recently through no design of my own, care workers have either been told they can't work for me or have chosen not to show up for mandatory training activities. I had been with participant-directed care in the past, and I purposely switched over to the agency to avoid this issue. Still, today I get told that I am a consumer delegate, so it is not the agency's responsibility to find me coverage in the case where they terminate a worker of mine. Granted, they are doing their best to help me out, but I must say that I am angry at the system on principle at the writing of this article.

If a company declares itself a personal care agency and you go into a company with the impression that they will cover your gaps when necessary, it should be the agency's responsibility to fulfill that duty.    I understand that I came into the current agency that I'm with, with my aides from other companies. Still, I believe that once those aides were forced to undergo training with the current company that I'm with, that company should then assume responsibility for them. I will not throw the current company I am with under the bus anymore except to say that yes, they are within state laws to do what they are doing, but I think it is morally appalling that such arguments have to occur. 

The labels and terminologies used within the aide care industry are set up not to benefit the service consumer but provide as many loopholes as possible. The system designed to promote independence instead creates much more stress and puts unnecessary burdens on individuals in need of care. Rather than focusing on what they can contribute to the world, a large portion of the disabled population has to spend a great deal of their time contemplating whether or not they are going to have the necessary services. Throughout the whole system, in general, not just in my situation, individuals are not willing to take responsibility for their part in the process. Instead, they want to pass the bucket so often that the disabled person gets discouraged and stops making noise.

I'm well aware that this writing piece may ruffle feathers in the disabled community at all levels. However, it is time for a change. Disabled people should not have to be limited to three bad choices. The second choice for living independently needs to be more widely available: the group house setting that I spoke of earlier.  Secondly, parents and supporters of the disabled need to put aside their preconceived notions of wishing that disability personal care was perfect. Perhaps if such group setting such as nursing homes and group house settings were not stereotyped and vilified, both of these systems could be improved. Finally, the state systems need to be federalized when it comes to the independence waver. Usually, I am not a big supporter of the massive federal government; however, state agencies have no uniformity. A majority of agencies will find any loophole to put the burdens on the consumer and not themselves. I understand that the personal care industry is not the most desirable field, but if you were a company in charge of your employees, you could not let them control everything. I understand that the personal care aide is a vitally important person but giving them too much control creates gaps in care and loopholes that need to be closed. Overall, for a system that started as a good idea, the personal care system needs to be looked at too closely, no matter what type of care one is discussing. Unique care should be freeing, not limiting. 

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.