by, Renee Wood

Self-direction is the freedom to make your own decisions in life and organize your life, rather than being told what to do when one is an adult. Self-determination is the freedom to control your life without undue influence, intimidation or rules that are unjust and only limited to people in your population.  When we talk about self-direction and self-determination these two words or terms get confusing. This is because we don’t hear typical people use these two terms in everyday life. Nobody wakes up and says; “I wonder how self-determined my life will be today?”, or think; “I wonder how much self-direction my life will have today”. Most people wake up and say; “What am I going to do today?  After work, I need to do my workout, on the way home I got to picked up some groceries, and maybe grab a beer from the corner bar”.

In other words, typical people just do what they want or have to do. These terms are not in their vocabulary. They may know what they mean, but the only population that uses self-direction and self-determination are people who are oppressed.  When we hear oppression what do we think of? We probably think of third world countries run by dictators who rule over their people. Although it is true that oppression means being ruled over, being ruled over is not always necessarily in a negative sense. Being ruled over could be being protected, but even being protected too much can stifle one’s freedom. It makes it harder to do the things you want to do without jumping through someone else’s, or a system’s, hoops just to do what you desire. But more than that, it prevents you from making mistakes and growing from those mistakes, or possibly from experiencing success, just because someone else, who’s supposedly over you, was afraid to let you try, fearing you might make a mistake. 

It is true that people with disabilities need to be a little more planful, than the average typical person, in how to make their day happen. For example, they might have to schedule transportation ahead of time, or get their attendant to meet them at the grocery store, however these services should be the wind beneath their wings, rather than the ball and chain that hangs around their neck. These support should be unseen in the background and easy to implement. These supports should make a person’s day look the same as someone who is not on government assistance.  But this is not today’s current reality and that’s why we talk about self-determination and self-direction. When these terms are no longer used in the disability community then we will be no longer oppressed and will have hopefully achieved some level of equality.

Self-direction should also extend to, (and are actually required by CMS [Centers for Medicaid and Medicare]) those government services that help people with disabilities in their everyday lives. Ohio is in 49^th place for self-direct services according to CMS. Ohio claims they have 2 out of 7 waivers that are supposedly self-directed, but it’s actually only a couple services in these 2 waivers, and then they’re steeped in regulations and not even a handful of choices that you can use them for. I classify this as cancelling-out self-directed services.  You are not actually choosing how to use that money, you’re just given a menu of options and you choose one, and then Ohio Medicaid (or another Ohio department) implements and regulates how you can use it.  What I call self-directed is the ability to take the money budgeted, and use it to meet your individual needs and then make an accounting of it.

To be clear, since we receive government benefits, the government is basically in charge of us.  Of course, the government would deny this, but technically we are their liability. This means if we have any kind of accident, or get hurt in any way, the public might have a fit because we were not looked after “properly” by tax payer money. It is true that some people on government benefits, like a Waiver, may need some extra support in making decisions, or guidelines on what to eat because they might be a diabetic and not understand what foods are unhealthy for them. This would be appropriate to place limits on a person who doesn’t have understanding of cause and effect. Even so, if they demonstrate an understanding that sugary foods are not great for them, but they still want to eat it sometimes, then you have to let them do what they want and suffer the consequences. Who knows maybe they might learn not to eat that stuff.

However, even though the government claims these services are “person centered”, they are not. It is easier to treat everybody in basically the same way, and make them think they are being treated to their own abilities – in order to bypass really listening and assisting each individual in sculpting a life the way they want and need it. A perfect example of this would be the ISP (individual service plan) in Ohio on the County Board end (rather than State end) for people with developmental disabilities (DD). ISPs are supposed to be required for people on DD waivers.  Why? I haven’t figured that out, since everyone on Medicaid is required to have a treatment plan. This just seems like a duplication. However, at the County Board level, everyone is required to have an ISP, whether it would be helpful to the person or not, even when they do not have a Waiver. Writing a good ISP requires hours of work. For people who are capable of telling someone what they need, and how to do it, it’s a waste of time and money. It’s easier for the County Board though, so nobody gets inadvertently left out or forgotten because that would be a disaster if someone had a waiver and no ISP.  This is not person centered – this is system centered, which is where oppression of people with disabilities begins.

I digress, I was trying to make the point that people don’t talk about self-determination or self-direction when they already have it, and it’s taken for granted, as it should be. It is only talked about when people cannot exercise it because something is holding them back, other than one’s self. In the US typical people live these freedoms every day without a thought. However, people with disabilities, who need government assistance, constantly have to prove themselves to earn the right to self-direction and self-determination. If you feel you need to talk about self-direction and self-determination then you don’t have it. When your life is self-directed and self-determined there is no need to talk about it, it is in the background and you’re just living life. Let’s stop talking about it and just do it!

In conclusion, the concepts of self-direction and self-determination are often taken for granted by those who naturally possess these freedoms. However, for individuals with disabilities who rely on government assistance, these freedoms are frequently obstructed by bureaucratic systems and overbearing regulations. The necessity to discuss and advocate for self-direction and self-determination highlights a persistent inequality. For true equality, support systems should empower individuals seamlessly, allowing them to live their lives autonomously without constant oversight or the need to prove their competence. The ultimate goal is to reach a point where self-direction and self-determination are inherent rights for everyone, rendering discussions about these terms obsolete, and letting individuals simply live their lives freely and independently.