Angela West is a self-advocate from Virginia.
Yesterday, I had my Supports Intensity Scale assessment (also called SIS). I know I must have one in the state I live in to the receive services I need to live in the community. I kind of knew what it would be like because I was involved in the testing. It was still hard for me to go through the process and have other people there talking about the type of assistance I need.
I feel like the whole process was not adapted for my needs. From the first phone call to schedule the assessment, I felt like I was not respected. When the scheduler called, they asked to speak to my caretaker. It was really confusing to get a phone call on my personal cell phone and have the caller ask for someone else. My caretaker told the caller that she should speak to me, but the caller insisted that she schedule with him. I think they should be speaking to the individual first and then ask if the person needs accommodations.
When the actual SIS was given, it was a little scary. Basically, you have a group of people talking about what you can and cannot do for yourself. I wonder how many people without disabilities would like to go through that. Some of us are probably used to it if we were involved in our IEP meetings at school, but this was a little bit different. Unlike the IEP, the SIS covers your entire life and not just one part.
After going through the process, I feel that the SIS may not show my true needs. I need a lot of physical help to do most of my daily activities. I can tell a person what I need, but to do those activities, I need someone to physically help me. So, I had a tough time choosing what level of care that I need. All I could do is give enough details so that they could understand.
I know that assessments help the state understand that the level of care is different for every person with a disability. I hope one day that we can develop a tool that can paint a picture of a variety of abilities. It is true that everyone needs some type of assistance.
I roll away with a good attitude, hoping that I can make a difference in this process in the future!