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. 

Forgotten Importance

       As human beings, we have an inherent desire to achieve independence, and it is only through social contracts in societal constraints that we enter into communities with others. This is a very simplistic way to put human beings’ desire for independence into words. However, it often right that this desire often comes with conflict relating to society and everyday constraints. Some groups face different conditions. Like for example, the restrictions placed on the disabled community are more prominent. 
       When it comes to disability, I have a unique perspective. I’m a twenty-seven-year-old male who relies on others for most of my physical needs to be met. When I say that I rely on personal care, I include such tasks as showering, eating, dressing, and even moving from a supine position in bed to a functional upright position in my wheelchair. Those in the aide care profession are crucial to my life, whether I want them to be or not. That being said, there are many things within the current aide care system that results in a disconnect between care providers and the people they assist. 
       Having a disability does not limit me as a person. I am currently in the middle of completing my last class for my Master’s degree. My situation is not commonplace, but it is not unique either. Many of the people who personal care aides take care of our disabled, intelligent, goal-driven individuals. I live in a college town where approximately one hundred students with physical disabilities attend a local university. The aide care community in this town is vitally important. Often those in the aide care professionals do not remember just how important they are to this community. They forget that other human beings rely on them for such simple things that they do every day and take for granted. Many of them have not even thought about what they would do if the situation were reversed. Often in college towns like mine, the aide care profession is heavily inundated with individuals who see it as a transition job. I am here to tell anyone who reads this that aide care should be classified as anything but a “transition” job. On the contrary, those who pursue aide care as a profession should follow the profession because they desire to help others and not just get to the next step of their plan.
       I understand that it is difficult in today’s economy to find a job, and not all jobs are attractive. I am also well aware that this article may come off as semi-arrogant. It is not intended to do so, but some people might take it that way. I believe that aide care and the professions associated with it, i.e., physical in-home health aides, agency coordinators, office personnel, nurses, and social workers, should not consist of apathetic and uncaring people. Now many may say that these types of individuals are scattered throughout all professions. That may be true, but it does not negate that the aide care profession should not seek to be like all other professions. Instead, it should hold itself to a higher standard. 
       In recent weeks, I have had my share of bumps in the road. I am not by any means saying that my bumps in the road are any harder or any less unexpected compared to other individuals. I am saying that the bumps in my street have been related to my disability, though, and could have been avoided had the people surrounding me approached their position in my life differently. If they did not see me as just a paycheck but as a living and breathing human being—maybe they would not find it so easy to call off at the last moment or to regularly not even show up. I understand that this is a romantic view of life. 
       As we progress into the second decade of the twenty-first century, it is sad but true when someone says that we are more self-absorbed now than ever before. The prevalent altruism used in the “Barney Fife” and “Leave It To Beaver” eras have sadly gone by the wayside. Along with that, it has died another very important idea, which is the “meaningful promise.” The dictionary definition of the word “promise” is a declaration that one will do or refrain from doing something specified. Sure, people say, I promise I will do that, or I promise I will be there for this, but rarely are those promises ever kept. Promises now become a placeholder when we don’t want to make somebody feel bad. This is also extremely true in the aide care profession. Often people will “promise” to cover specific shifts but conveniently forget. I am realistic, and I know that in life, sometimes things come up unexpectedly, but if you are not even man or woman enough to pick up the phone and tell me (or anyone else in my situation) that you are unable to come—or flat out do not want to go in, then don’t even bother, “promising” me anything. 
       I may be angry after reading that last paragraph. Overall, I am not, but sometimes it is essential to show that, yes, even disabled people have spouts of anger. Anger is a great motivator. I hope that what I have said and what I will continue to say in the rest of this article will help those in the aide care profession understand their importance. The current system perpetuates “aide apathy” (as I like to call it), but just because the system is broken does not mean that people cannot rise above it. There is no earthly reason that anyone can give me to explain why a twenty-seven-year-old female was left in bed from 11:00 pm to 11:00 am until the next day, which was not by her own doing. This young lady was left in the ground because somebody overslept or decided not to come in. I understand that the aides that care for us, the “disabled community,” are human as we are—but whether it’s fair or not, they need to be held to a higher standard. To illustrate, let me use an example. 
       I know that I have hammered home the point of non-apathy by the aide care population throughout this piece, but here is a very powerful example. Consider the person(s) you are taking care of like your children. Would you want your son or daughter to have to sit for hours in urine and feces? Just because someone didn’t want to do their job because it happened 20 minutes before the shift ended. I think the common sense answer to this question would be no. Also, consider that same idea when making plans to go out and party the night before working. It is notable to mention that the tardiness and constant call-offs have to be tolerated because disabled people have no recourse and other substitutes for you. Or so you think. Your assumption is probably the case, but remember that at some point, everyone can be replaced. It’s a harsh reality, but it is a reality of life that many in the aide care profession forget about.      
       I have been harsh on those in the aide care profession throughout this piece, and before I close, it is important to mention that I do appreciate the aides, and I understand that the system is broken. How can a person who takes care of someone 20-40 hours a week not develop a bond with him or her? It is impossible. However, many who are not in the industry but know people who utilize services believe that neither the consumer nor the provider should get involved in each other’s personal lives. I have a question for them. How do they expect that to happen when each individual is such a large part of the other’s life? I am so harsh on those who provide aide care because they need to realize how vital they are and how important they are to the system. Hopefully, this piece will do a little bit to boost the confidence of consumers and the awareness of the individuals who take care of them.