This is about a very current, immediate, and real-life situation concerning my brother with disabilities.
It is very likely that I will need to travel back home this week to help take care of my brother. Don’t get me wrong, I am not upset about this potential. I miss my family and home dearly. But the circumstances surrounding my sudden and unexpected trip are infuriating.
Write while the heat is in you. The writer who postpones the recording of his thoughts uses an iron which has cooled to burn a hole with. He cannot inflame the minds of his audience.
– Henry David Thoreau
I am writing this while the iron is still very hot, so as to hopefully capture the passion I have for this issue.
I must admit, I don’t completely understand the complex policy and law surrounding care of people with disabilities. It is extremely difficult to understand, even having spent a lifetime dealing with it. Here are the options, as I understand them, for my brother’s living situation:
- He can live in a group home run by a private agency. Here, he would be living with other people with disabilities, some more severe than him, some less, and the agency (called a provider) would be responsible for providing staff and training them to take care of everyone in the home. The problem with this route is that the provider is encouraged to cut corners and save money by sharing services. What does this mean? It means that instead of my brother receiving 1:1 care, that is, someone who is by his side 24/7 (which, has been determined necessary for his health and safety by countless doctors, and the state itself) he instead will share one staff person with the other people in the group home. So the staffing ratio would be something like 2:1 or 3:1, that is, one person caring for two or three people. This obviously saves the provider money, but it also saves the state money, too. There are obvious drawbacks to this, not least of which is it is extremely difficult to find and keep staff due to the staggeringly low wages. I spent almost five years working for one of these providers caring directly for my brother for 40 hours a week. Most staff people make minimum wage or a buck more. Let me make this very plain – the amount of money someone can make taking care of another human being is the same as, or in some cases less than the amount someone can make flipping burgers. Not to mention there are no benefits and the job is extremely physically and emotionally demanding.
- He can live at home, receiving care from his family. This is called natural support. The assumption is that the family looks a lot like a stereotypical nuclear family: one working parent, one parent that stays home, maybe other children. So this natural support is assumed to be both financial support and care-giving support. As a result, when a child with a disability lives at home with “natural supports,” the state provides less money than if they were to live in a group home. If the child in question is not severely impaired and is capable of taking care of themselves to some degree, this isn’t as problematic. However, there are a lot of situations where this is extremely problematic. What if the parents of the child are divorced? What if there is only one parent that cares for them? What if the parent(s) are unable to make up the difference financially? What if the child has severe impairments? All of these, incidentally, are the case for my brother. Further, as the child and parent(s) age, care becomes increasingly difficult to provide, thus making the draw of a group home more and more attractive.
There really aren’t any other options for people like my brother. On the one hand, he could live in a group home, receiving substandard care from people who aren’t getting paid well at all, while the group home and state are saving huge amounts of money. On the other hand, living at home is not a viable option because he requires more care than is possible from one parent, and the amount the state provides is so little that it would require our mother to work more than is possible. This makes the group home option seem like the only option, while also fostering a sense of failure as a parent for not being able to, “do it on your own.”
We have tried a third option not mentioned above – my brother lives at home with our mother, but he has a separate floor to himself. So it is like he lives in a separate residence, much like if you were to split a house into two apartments and rent it out. Then, we have tried to find agencies that usually provide services in group homes, and have them come into my brother’s home and take care of him there. It seemed like a great compromise, though it did come with no small amount of difficulty.
However, this arrangement has proved to be no more successful than the other options available.
Some additional information is needed to appreciate the complexity of this situation. While legally providers are not allowed to own the group homes where they provide services, they have found ways around this. The reason they aren’t allowed to own the group homes is to prevent a conflict of interest – the rent that individuals with disabilities pay would go directly to the provider, tempting them to raise rent and make more money. Not to mention that they would be able to evict tenants for reasons unrelated to their care. However, it is not really an option for people like my brother to buy their own home either. Because he is unable to work, he receives a modest amount of money from the government to help him pay his bills and buy food. And, if he were able to afford a house, he wouldn’t own it – it would become property of the government.
The last piece of this complex puzzle I will mention is the policy that for when providers and agencies want to stop providing services. As I mentioned above, providers are not legally allowed to own the group homes where their clients with disabilities live. Otherwise, they would be able to evict anyone for almost any reason. Yet, this is still allowed to happen in a roundabout sort of way. Agencies are essentially allowed to give 30-days notice, which gives the agency permission to stop providing services for any reason. I’ll come back to this in a moment. But what is important to understand is that even after the agency provides notice that they will stop providing services, the individual isn’t required to move out of the group home where they are living.
This can be a bit complicated, so an example might help.
If an individual is living in a group home where agency A provides services, and then gets notice that agency A will no longer be providing services, technically the individual is allowed to stay in that home. Remember, agencies are not allowed to own the group home – and this situation is one of the reasons why. So the first thing the individual and their family will do is look for another agency to provide services. But, agency B will not come into the group home agency A uses, where the individual resides. Why? Two reasons. First, agency B will not be able to share staff with agency A, and vice versa, so it ends up being more expensive for both agencies. Second, and more to the point, agency B will be losing out on money because the rent the individual pays will still be going to agency A. “How is this possible if the agency isn’t allowed to own the group home?” you may ask. As I’ve mentioned, the agencies find ways around the legal restrictions of owning the group homes, such as getting a relative or spouse of the owner of the agency to put the home in their name. In reality, the agency really does own the group home while everyone who should be enforcing this law looks the other way.
So this is the current situation my brother is in: he is living at home, but technically it’s a separate residence. This at least means there is no fear of him getting evicted or having to find another place to live. However, no agency will provide services for him. Because of his severe impairments, no provider can find and keep staff willing to take care of him for minimum wage. This is why it is possible I will have to travel home this week – to help take care of my brother because there is no one else willing to do it. Again, I don’t mind coming home or taking care of my brother. But it isn’t a sustainable solution. Taking care of my brother requires a lot of energy, and more than one or two people. If it takes a village to raise a child it takes two villages to care for my brother.
But what else are we supposed to do? Where do we turn?
And here is why I am most angry at this situation: there is no where else to turn; there is nothing else we can do.
The two places we should be able to go, the government and the church, have turned their backs on people like my brother. The government, while providing essential services for my brother, and I cannot emphasize enough how essential these services are, is ineffectual at best, and corrupt at worst. Most of the state and local government agents we have to work with are only concerned about saving money, not the health and safety of my brother.
My real anger, however, is directed at the church. Perhaps it is because the iron is still too hot, but I cannot even think of something positive to say about the way the church has dealt with people like my brother. This anger is not new. In fact, the majority of my life the church was never something I thought should help – it addressed a dimension of life that had nothing to do with my brother or his life. Why would I turn to them for help?
I have met with and spoken to a lot of “church” people who love to tell me about the ways the government doesn’t work. Naturally, I bring up my brother and his unique situation. Their response? They blame the family. The family, as an institution, has failed to do the thing families are supposed to do, they say. If only we can get the family back to what it once was (make America’s families great again?) then all of our problems will be solved and we won’t need to rely on the government to step in and cause all of these problems.
Naturally, I vehemently disagree with this.
There are too many places to begin to describe everything I find disturbing and upsetting about this line of thought. But let me try.
First, placing the blame and responsibility solely on the family ignores the context in which the family exists. I’m all for strengthening families, just not for placing undue burdens on them. Telling a single mother that she isn’t working hard enough to care for her children, and that maybe she should have stayed married so that her family could be better supported financially is disgusting and morally reprehensible. This line of argument also presupposes a certain model for family – also something I reject. Even the most stereotypically nuclear family is not an island. They live in the world and interact with other individuals and families. Why must we cordon off ” the family” from the rest of society? This is unrealistic and unhealthy. As overused as the term is, community is a far better word for describing what a family actually is and how it actually functions. Any problem of a single family is a problem for the community.
Second, the government, with all its problems, and there are many, is the only institution that works for the well-being of my brother. If there is one thing I have learned in the past several weeks studying the history of disability, it is that the church is indirectly (and in some cases directly) responsible for the way disability is understood in our society. True, it is impossible to really separate out the ways the government and church have influenced and informed each other. And it is true that the government has done some unspeakable things to people with disabilities (just look at my last post). But two things are worth mentioning. First, the justification for this treatment was provided by the church itself. It is impossible to ignore the church’s history of legitimizing unspeakable horrors and atrocities. Second, the government has at least changed. Attempts have been made, however successful or unsuccessful, to change law and policy to benefit the lives of people with disabilities. No such change has been made in the church, at least that I’ve seen.
Lastly, this whole idea is promulgated by people within the church. It seems a way to excuse the inaction of the church as a whole, and to justify their hearts of stone. The church has failed my brother. The church has failed our mother. The church has failed our family. Therefore, the church has failed our community. Because of the issues I mentioned above, plus more besides, the church is not capable of being the church. It has, for too long, been the church of and for the first: the rich, the healthy, the insiders. By suggesting that the problem is really with the family or the government, those within the church who have benefited the most remain safe and secure. God forbid they get their hands dirty or give up something to help another.
Lately, I’ve felt pretty good about being a part of the church, of working to make it better and to meet the needs of the community. But today, I am ashamed of the church and I am ashamed to be part of the church.