I Have It Easy?

I’m a woman who has epilepsy and is on the Autism spectrum. I am happily married, a mom to an amazing son and daughter-in-law, a 1st-time grandparent, and a doggie mom. For the most part, I am self-sufficient, but what I do need support in, I really need support! What are the supports? Transportation is the biggest issue, understanding forms, and at times I need help filling them out (like food stamps), finding things to get me involved within the community. (I work from home, so this is hard for me) And trying to keep my life organized, while making connections with my family. It sounds fairly easy, right? So I can’t understand why agencies and state supports that say they “support” me and my goals then handicap me so much.

I get services called self- direction. A program that puts me in charge of what I feel I need to work on with my staff (aka Direct Support Professionals, or DSPs), but today I walked into a huge debate that ended up stressing me out so much it triggered multiple seizures. My husband is mentally challenged and has NO supports because he “doesn’t qualify” for help from agencies. So that means a lot of things fall on me. We have tried for 2 years to find someone who can deal with his disability to pull a tooth that has a nerve exposed. But the only hospital that has the supports he NEEDS is a 2 hr drive away. I was told by the doctor that I had to be there to support my husband and to sign forms (which I needed help getting explained to me), so you can imagine my surprise when my new DSP ( she just started a week ago) got into trouble for filling out a form wrong. Her wording was wrong, but no one really took the time to explain things to her. So the agency called me and said they couldn’t pay her for her services and that she couldn’t take me there again because it wasn’t supporting me. I couldn’t believe it! I explained to my Fiscal Intermittary and her boss what my DSP had to help with, and the backlash and attitude I received was so disrespectful. Yelling at me on the phone to the point that a person sitting next to me heard the whole thing! My emotions have been so raw after losing my dad a few weeks ago and still trying to process everything, and now here I was getting yelled at!

It didn’t matter that I said that I had to be there too by the doctor’s request or that my DSP had to help me understand what I was signing. They said, “It wasn’t supporting me, just him. Are you his health care proxy?” I was stunned he is my husband! She yelled at me and said he needs to get his own staff, but mine couldn’t support me as I supported him; they were worried I would get audited. I kept asking the same question, as it didn’t make sense: How is it I can take my mom shopping and to do things with her and that it was allowed, but I couldn’t do the same for my husband? Her attitude became snarky, and she said Because that is about you, not your husband. And that my staff couldn’t take me to the hospital the day of the surgery despite his doctor saying I needed to be there in case something went wrong. I said my staff needs to be there with me in case I have a seizure (which are triggered by stress, which my husband having to be put under for dental surgery is not only scary but stressful) or in case I have to do more forms. Her rude answer: “Well, take a taxi.” For a 2 hr drive to the hospital, and “then your DSP can drive there and sit next to you and to support you but NOT GET PAID.” What?? How is that supporting me at all? And why should she do this for free?

All I could do was cry and be stressed out (which led to 3 seizures). Me, who is usually a great advocate, just gave up. I don’t have the energy to fight this with everything else that is going on in my world.

It’s taken us two years to get this surgery, and my husband has really suffered in pain. His doctor has said they NEED ME there because he is mentally challenged and has panic attacks that can trigger asthma attacks. He too has seizures. Or they WON’T work on him. And she is telling me that they can’t help me; then what in the hell is the point of services? And if this was their husband, wouldn’t they be there too? She kept yelling, saying, “You need to realize that this won’t be happening. We will pay her this time, but she isn’t allowed to take you there anymore! Get him his own services or staff! This isn’t something that we need to support you with! It’s really his issue, not yours or ours.” All I could do was cry more!

I’m more handicapped than disabled by the very people who say they support me. Honestly, I don’t know what is more upsetting than that: I have to cancel my husband’s appointment or the fact that this supervisor of services yelled at me like I was a child who needed to be disciplined. And seemed to have disregard for how her attitude and screaming were affecting me, despite me asking her to not yell at me and to please answer my question and explain things to me”

Why am I sharing this with you? Because you need to fully understand how hard this life is. So many people have said that “people with disabilities have it ‘easy.” What is easy about this? And how often are you treated and spoken to like you are a child? its humilating and frustrating because there is nothing I can do. Shouldn’t the agencies be able to help me while I’m supporting my husband, and I shouldn’t have to be his health care proxy to do what needs to be done. I feel so bullied and defeated. And they know this is part of my disability struggles. I just wish they could understand… I wish I could understand… I wish you could understand…

This isn’t my artwork but seems befitting