Moving Along

            It’s funny what you find on the Internet. It’s been a while since I’ve written anything because I’ve been busy reading and writing a book, but today I came across something noteworthy. As many of you know, I recently graduated with my masters who have followed this blog. You may not know that I have been planning to move from my Pennsylvania home to a home in Florida.

            The home is currently being built, so as far as a physical structure, I will have an accessible place to live, but moving is never simple when you are non-disabled, much less when you are disabled. Because I require so much physical care, I use at home health services to provide that care. I use these services to avoid going into a group home or a nursing home. These services fall under what is known as home and community-based services.

            As of today, there are no uniformed national standards for home and community-based care services. Each state can set its criteria as to how to dispense these services. Why is this a problem, one might ask? Under the current system, the way services are proportioned only accounts for disabled individuals who want to stay near their hometown or area they live in currently. There is a significant gap between uses if you are a disabled individual moving from place to area. This can present a problem because it does not view disabled individuals as people, but rather as fixed pieces on a chessboard that stands still. Disabled people have just as much desire to grow and explore the world as everyone else. However, there is hope on the horizon.

            In an article found in Disability Scoop, Michelle Diamante outlines possible hope for people who use community-based services. She details what is currently know about the impossible senate bill from an Iowa Senator to improve community-based services. While the article does not include many details about the account, Diamante does quote the senators senior aide as saying “(Harkin) is currently looking at developing legislation that would enhance community access, inclusion, and support to ensure that all individuals with disabilities can receive home and community-based services and supports in their towns, cities, and neighborhoods throughout America.” All of this came about as a result of a report/study by the senator’s office, in which Senator Harkin found” Chairman Harkin’s 2013 investigative report‎ showed that the integration mandate of the ADA, reinforced by the Supreme Court Olmstead ruling, still is not being met across the United States”. To better understand this quote, let us look further at the Olmstead ruling of 1999.

            To begin with, the Olmstead case had to do with two women in Georgia. They were voluntarily committed to a psychiatric wing of a hospital. The women had both mental and developmental disabilities. After their initial psychiatric treatment was complete, it was determined that they should be moved to a community-based program, rather than be confined to a nursing home or institution. Unfortunately for them, both remained in the hospital for several years until they filed suit under the ADA in 1999 for release from the hospital.

            This case was critical because it determined, where appropriate, community-based services should be sought over institutionally based services for people with disabilities. The senators’ proposed bill may provide hope for increased funding and fewer gaps in care for people with disabilities, but only time will tell.

 

http://www.disabilityscoop.com/2014/05/19/senator-strengthen-disability/19374/

http://www.ada.gov/olmstead/olmstead_about.htm

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. 

The Elephant in the Room

Okay, so it’s been a few days. I’ve been busy, and I finally submitted the first round screenplay to the NYC Midnight Screenwriting Challenge along with promoting my friend’s show “My Gimpy Life.” Teal and her team are interviewing five candidates this week to fulfill the position of Social Media Coordinator, hopefully. Good luck to my friend Jessica Rose who has an interview today with MGL.

       Over the last couple of days, during my hiatus from blogging, a significant issue has arisen in my life, which has inspired me to write this blog. I have had a couple of hiccups with my aide care. When these issues first occurred, I wanted to blog, but I didn’t because I would have come across as bitter and angry if I had. Now I can blog about it because I am removed from the situation. I am not upset and angry but just disappointed in my generation and their dealings with others. This blog has not only addressed disability issues, but it will handle a generational issue as well.

       We are all familiar with the phrase, “Actions speak louder than words,” but do we ever really pay attention to what that means? Although I have not held a paying job at this point in my life, I am pretty intelligent, and I understand the value of a dollar. I also have dealt with personal care workers for quite a while. And I know that this type of employment is unlike any other profession. It differs from any other profession in many ways.

One of which is expected while others are not. That outside of the unique situation that is the job of personal care can see a misunderstanding. The obvious way that aide care is different from any other profession is that there is no privacy. The most intimate functions are shared between two people. When a person has to use the bathroom, they need other people. When a person has an accident, they need other people. This, in and of itself, can both cause some incredibly funny moments. Still, it can also lead to the development of another way in which personal care is different from other forms of employment. I have been warned against it many times, but I find it impossible not to become friends with the person or persons who take care of me. When somebody is intimate with your privates or puke, you have to have goofy conversations to offset the awkwardness. Eventually, the aide usually quits, or you develop a deep bond and understanding because not everyone can relate to what you two are going through. This closeness and friendship often cause one to forget a very important element of the aide care job. It is indeed a job, and your client is often extremely dependent on you. In my case, for example, to put in a funny way, I am like a giant baby with a brain and a sense of humor.
       Many disabled people would not like this analogy, but if they were honest with themselves, they would find an accurate description of our situation. As for me, for example, I am fully dependent on others for everything. If there is a snot booger coming out of my nose and I feel it dripping down into my mouth, I have to ask others to wipe it. Some of these tasks may gross the caregiver out, but if they sign up for this job, then that is what they signed up for. Except for my awesome finger and its shitty driving skills, I can’t move. I am also physically dependent on people to get me in and out of bed. Other disabled people are in similar situations. Some caregivers have an interesting perspective on the fact that we are dependent on them. Some aides view it as doing me a “favor.” Yes, I admit that I would be screwed without help but let me give a quick English lesson. The word “favor” means doing something and not getting something in return. Hence, aide care is not a favor to any disabled person or me because aide care workers draw a paycheck!

It might be a shitty paycheck, but it’s still a paycheck. If one were in the real world and refused to do specific duties, their boss would not put up with it. However, I included, along with other disabled people, have to put up with it. Why is this, you might ask? Simply because we are so dependent on people, some give and take in aide care relationships. Still, my generation does not understand the difference between working for a friend and working in general. Yes, you are friends with your clients in most cases but don’t abuse the friendship and produce a substandard care level just because you know we have to deal with it. Or, as a former friend of mine said to me (when he was training someone on how to be a personal caregiver), “You should always take care of a person as if you’re going to be in their shoes tomorrow.”

Initially, after the last aide care bump in the road, I have to say that I was bitter and angry, and I had a poor pitiful “me” moment. However, that didn’t get me anywhere. I soon realized that this would be a part of my life, not a fun part, but a part of my life nonetheless. I also soon realized that I was angry at the situation as much as I was mad with my generation. For the most part, in my opinion, my age is so self-absorbed, and altruism is a word most do not know. They put no stock into being on time and no value into a commitment. This does not only apply when it comes to personal care purposes for entirely dependent people. I’ve found this applies to other areas of life as well.

When this occurs, it causes significant issues for several reasons. Apart from the unreliability that results from people not taking responsibility seriously, it also creates other problems. I live independently from my parents, and they live six hours away, and they freak out every time I have an aide care issue. This is understandable, but freaking out does not do anything, and it only exacerbates the problem. Many people ask me why I tell them about my issues. I tell them because I need someone to vent to before I drive my chair straight through a wall. However, telling them is both a positive and a negative thing. Telling them allows me to get out of my frustration, but it also allows them to respond with the following. “Well, you shouldn’t have to live that way!” or something similar to that.

I agree with their romantic view, but that is not my reality. I should not live that way, but I do, and for a couple of days after the latest incident, I wondered how I was going to deal with this reality of my life. During this period, I ended up getting miffed at my generation. Now one might ask, how do I connect the problems I’m having with a personal care issue into a generational commentary on the sad state of affairs today. Well, the only answer I have for that is I’ve always been an old soul. I think way too much, and I have a unique way of looking at things. This example is a perfect one. With my aide care situation, I realize something. Not all my aides were acting that way. It got me thinking since when did people not value their word or commitment?

As I’ve stated before, I feel that my generation is the most self-absorbed and selfish generation that I’ve ever met. Altruism was not a word that we learned, and we are more concerned with what other people think along with what other people are doing compared to what we should be doing. How does this relate to aide care? Simply put, some of those who are around my age do not view this as a job because they are close to me in age. They view it as being able to hang out with somebody and get paid. A key example, I’ve had aides who will “refuse to do certain tasks because I have other shifts that can do it for me.” Or they are tired or took the job because they needed time to sleep—or sometimes even money. They’ve also said that other shifts can do it for me in general. This has occurred in Edinboro, Pennsylvania, and when I was living at St. Andrew’s in North Carolina.

This is not only the dumbest philosophy that I’ve ever heard, but people often forget that one would not be able to pick and choose what they do at particular jobs in the real world. You can either do something all the way or not at all. There’s no room for someone who does their job half-assed. When you pick and choose what you desire to do in a personal care position, it can cause problems, and these are not easily fixable.

Often it is hard for the person being “refused” to say anything because they don’t want to lose the warm body, i.e., the person who’s helping them, and their support system often doesn’t understand this. Even their parents or their service coordinator say that the caregiver should not dictate the care, and in an ideal world, this is what one desires. However, if a caregiver decides to show up several hours late, nothing can be done about it. I’m not speaking about any caregivers in particular because I’ve had several that have done this.

Before I continue, a quick aside to show that I understand things from the caregiver’s perspective. When you get into private one-on-one the care, I am sure it is different than working for thirteen people or even forty people where you have a break from the individual, and you have other co-workers to vent to. I also believe that it is not right that caregivers should be at a client’s beck and call. I admit I have been guilty of this. I am not dodging my responsibility at all. I feel that a majority of disabled people (as I’ve said myself included, and earlier portions of my life) have the belief that the aide is there to serve them. This is not the case.

The aide is there to help them. That being said, I come to my next point. I also believe that anyone who does not understand the dynamics of the relationship between a caregiver and a client has no right to comment about what is going on between them regarding how well a particular aide is doing their job. Yes, I do believe that aides are often underappreciated and underpaid, and this needs to change. Like I said before, though, both parties have responsibilities to create a healthy client/aide relationship. And a note to all prospective aides, do not use this as just a stepping stone job because it is not a job one can take lightly! It is not like working at McDonald’s. If you are late, give your client the courtesy of informing them because they rely on you for everything. At this point, I’m not just talking about me. I know one person in particular who was stuck in bed for several days because she had no one. Again, back to the disappointment that I have in my generation.

My generation seems to think that everything should revolve around them. Altruism and responsibility are words of a foreign language to most individuals in my age, but the most unheard concept in my generation is a “promise” that is kept. A lot of people promise someone the world, but how many of them follow through? Not very many. Since when did our word become worthless? It is okay to tell someone, “No, I don’t think I can help.” in that situation. It is okay to tell someone how you feel. Not only is my generation skittish about being honest with their peers, but also, if their peer is in some form or another disabled, then this skittishness is magnified.

I am not expecting society to change overnight, but honesty must exist in the field of aide care. If you know you are not going to fulfill duties, you need to tell someone. Whether it is either about not being able to get there on time physically or if your client is asking you to do something that you don’t want to do, then you need to either discuss it with them or if it an essential piece of the aide care description then re-look at your job description. If you are uncomfortable with your duties, then get out of the aide care business!

A final note to my parents and any other parents of disabled people who might be reading this. The realities presented in this blog are much different than I’m sure the reality that you have envisioned for me, but they are the realities that I live with. People are not going to change overnight, but it is only through communication and action that change will occur. No one’s life is silky smooth. You guys only freak out because my current goals seem a lot larger than yours. Just because you freak out about them doesn’t mean it fixes the situation. Eventually, it might make me talk about the situation less to you. Not because I do not love you and your opinion but simply because constantly reminding of how my life should work out in a caregiving sense does not help me come up with solutions for what is occurring in my life.

In closing, I don’t know who will read this blog and what emotions it will inspire in people. I thought it needed to be written to discuss significant elephants in the room that disabled people and their caregivers often ignore.