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. 

Supposed Hero: Not Really, I’m Just Rolling with the Punches--Literally Rolling

So this blog will have no footnotes, no scholarly research. It comes about as a result of the conversation I had today. While enjoying the sunny weather, let me first say that even in Edinboro, Pennsylvania, sunny days are rare in the summer. It is nearly the latter half of May, and we just had snow a couple of weeks ago. So when it is sunny out, I must take the opportunity to enjoy the weather. I was doing so earlier today when a not very unique occurrence happened. 

I met this gentleman named Dan. He was fishing for bluegill in a very muddy Edinboro lake. He was overall a nice gentleman, and we chatted about the outdoors and hunting, feeling in particular. Then we got more into detail about what people do. He asked me where I live, and I told him that I live in an apartment building right up to the street. He then asked me if I was from the area. I responded with, “Hell no! I hate cold weather! I’m originally from Florida but grew up in North Carolina and Maryland.” As most do when I respond that way to that particular question, he gave the following reply, “Then what brings you up here?” I said, “School.” We then discussed how the Edinboro University of Pennsylvania is one of two schools left in the country that provides personal care 24/7 in some capacity. I explained that I don’t use personal care services anymore because I live off-campus, but they help. 

Dan then asked me what I was going to school for. When I told him that I was getting my Master’s Degree, he started a familiar path. He said, “You are so great for what you’ve gone through” compliment. I know that this is not meant to be patronizing and that many non-disabled people could not imagine being in a disabled person’s shoes, but it gets frustrating after a while. For those who are not understanding, I am not downplaying what I’ve done or achieved. I am merely downplaying the role that my disability has played in it. To put it another way, people compliment persons with disabilities for everyday acts like they have done something extraordinary. That would be the same as me going up to a person and approving every time they tied their shoes properly, which some of my friends still have trouble with. 

The compliment is well-intended, but the able-bodied community does not realize that most disabled people do not see disabilities as a disability. They see it as a label that they must overcome. There are hundreds, perhaps even thousands of disabled people that can contribute to society. Fewer are given a chance. Those of us who are granted the equal great opportunity wanted to be that--an equal opportunity. Our accomplishments are made no more significant by the fact that we have a disability. People who may read this may disagree. They might say that I or persons in my situation have greater obstacles to work over everyday pieces. Is my argument, don’t we all? In this case, a basketball player friend of mine will call Lucy an outstanding basketball player. She has just received a contract to play overseas. Which I am very proud of her for. However, many pressure and no varieties put on this individual because she’s tall and overcame cancer. This individual, who is a great person, does not see her overcoming cancer as something special. She sees it as a blessing, and it has given her perspective and has it be her obstacle. It is no different than the single mom going to school with four kids who work for me as an attendant. She has barriers, as well. However, when you are disabled, they no longer become obstacles. They are significant hurdles. My ability to overcome them is no different than my friend Lucy’s or my friend, who works for me. Those of us who are given obstacles in life is given them because we are strong enough to overcome them, and we are meant to overcome them because we are told to test ourselves. Perhaps for something more significant and not to be praised as if we are better than everyone else. 

My point in closing is that everyone has obstacles, whether financially, physically, mentally, spiritually, or other types of hardships. I hope this blog does not sound arrogant or ungrateful because that is my not intention at all. It is merely to show that just because disabled people’s obstacles are sometimes visible, it does not make them any greater or less than anyone else’s obstacles. Blocks are put in place to make us who we are meant to be and not make us stand out as something extraordinary. If we do, that should be by our own doing and not by an obstacle put in front of us. We have no control over.