Impact Feature Issue on Meeting Transportation Needs of Youth and Adults with Developmental Disabilities
Getting Where I Need to Go
For me there is a huge connection between self-determination, community participation, and transportation. I’m very active in the community and transportation is something I highly rely on so I can participate in activities. For example, sometimes I go to a social club called the Wolves Den for people with developmental and other disabilities; I was a charter member who helped start it five years ago. It’s at a church and I meet people there and do things like dance and play games. When it began, there were only 20 people and now it’s about 130-200. For me going there is like a homecoming because I’m with friends who have the same disability as me or other disabilities. And to get there I take the city bus. I also mentor a kid at his house, a kid with Down syndrome, and we go places like to the park; I take the bus to get to him. I like sports and I go to a lot of Minnesota Twins games because I have a friend who works for Fox network who gets me tickets; to get there I take the bus and the train. I also am a volunteer public speaker on disability issues and self-advocacy. When I travel to speaking engagements I have to make transportation arrangements with the people who invite me or I can’t be there; because I don’t drive and it doesn’t always work to take the bus, especially to areas I don’t know or late at night, I may ask the organizers to give me a ride to the event and back again, or I may take the bus there but ask for a ride home. And I take the train and bus to other places in the community, like the Mall of America, wrestling events, concerts, and to my job.
I’m the kind of person who, if I want to be somewhere badly enough, will do whatever it takes and take whatever transportation I need to in order to get there. It’s a cross between self-determination and persistence. I’m persistent to make sure I get to where I need to go.
I use my self-advocacy skills every day on the bus. The biggest challenge with my disability is that I’m easily distracted – I have difficulty staying focused – and as a result I can miss my stop. So when I get on a bus I tell the driver what street I need and ask him or her to tell me when we get there. Sometimes a driver may be rude to me when I ask them that. For instance, one driver snapped at me and said that I’d been on that bus often enough that I should know where that stop is. I do have a good memory for bus route numbers, driver badge numbers, and the time of day I’m on the bus, and when things like that happen I’ll call the bus company and complain. There was another time when I asked a driver if the bus went to a certain address and he said yes. And then he passed the stop I needed. I said to him that he had told me he stopped there, and he said he’d forgotten that it was a “limited” route bus and didn’t stop. Well, I pulled out my card that says I have a disability, and I told him I needed to go to that address, which was only a block away, and I made him stop the bus and let me off. He was going to argue with me and I said that he could either let me off or I could take his badge number down and call the bus company and tell them he gave me incorrect information. He let me off. And I told him to please make sure to give accurate information to people – that it’s very important. Now we have the train, the light rail, and I’m so glad because it has an automated voice telling you what station you’re coming up to; it’s reliable and it’s loud enough to get my attention.
I’ve had the Medicaid waiver for a long time, and now I’m working with my case manager to use the waiver to give me more transportation options. We’re looking at taxi service using a voucher system. A certain amount of my waiver money will be set aside for taxi rides, and I’ll be able to call the cab company and give them my code, they’ll find me in their computer, and when they give me a ride all I have to do is sign the voucher card and the waiver will pay them out of my money. This will give me more flexibility. For instance, recently there was a change in bus service so that buses don’t run downtown on the Nicollet Mall between 6:30 and 11 at night. I didn’t know that. I went to a wrestling match and afterward I was waiting and waiting for a bus on Nicollet. Then I saw a sign that said they weren’t running. I missed the other sign that said they were running a block over. So I walked home from downtown and got home about midnight. Being out on the street walking home that late at night made me vulnerable. With my waiver, if I got into a situation like that I could use the taxi; I have a phone card to use if I get lost or in trouble on the street, and I could use it to call the taxi. Being able to use the taxi will make it possible for me to go more places at night by myself and not be so vulnerable. At night a lot of times I feel lonely and my thoughts run wild. I handle myself okay in the day, but at night I need a crisis prevention plan, like being able to call Crisis Connection or my staff. It helps if I can go out somewhere in the evening, but if I go out at night alone I’m more likely to get lost even if it’s an area I know. I’ll come out of a building and start walking and get lost, and then have to try to go back to where I started and ask someone to help me get oriented to where I need to go. With the waiver for taxi service I could be out at night more often and not get lost.
Though I have a lot of persistence and do a lot of self-advocacy when it comes to getting to where I want to go, I don’t do it all alone. I have always had different people helping me. For instance, in high school I decided I wanted to go to a certain school outside of my district because that school had better programs for students with disabilities. Because it was outside my district I couldn’t take the school bus. So, I told the school that they could either train me on how to ride the city bus to school, or I wouldn’t go to school at all. Well, my case manager at the school drove to my house every day for two weeks, parked her car there and rode the city bus with me to school – teaching me how to do it – until I learned how to do it by myself and how to stay safe. During high school I had jobs and I was able to take those skills she taught me and use them to get to work, also. Today as an adult I have three PCAs (personal care attendants) and one of them makes schedules for me that let me know where I have to be and when, and that helps me plan my transportation. For instance, if I set up an appointment for something or plan a social event I’ll tell her and she puts it on my calendar that goes on my fridge. I need those kinds of visual reminders to remember to do things, and the calendars she makes help me remember and plan for my activities out in the community and decide how I’ll get there. And I also have my case manager helping me with transportation by doing things like working with me to use the waiver for taxi service.
I have two transportation goals for my future. The first is being able to use vouchers to take the taxi. I think I’ll be able to do that soon. The second is learning how to drive myself. I passed driver’s ed three times in high school but didn’t take the permit test. Now I’m looking at doing that. I would take driving training through Courage Center to learn some things I need to know beyond what I learned in drivers ed. I’ll also need certain things in the car. One of things I’m going to need is that everything has to be digital. I can’t read those little lines on a dial speedometer, so I need to have a digital speedometer. I don’t know how to read maps but could use an on-board system that gives me verbal directions from one place to another; you can type in where you need to go and a voice tells you the directions. I need those kind of verbal cues. I also need visual cues. I’m teaching myself how to do landmarking; I learned a little about it in high school and now am learning more about looking for visual cues in the environment that help me independently orient myself to where I am. So, once I take the driver’s training and work on these things I’m hoping I’ll be able to drive during the daytime.
For me, having as many transportation options as possible is good. The more the better. I would like to tell agencies who serve people like me that if you want people to be more independent, you have to help them learn how to do things like contact the bus company to get information on routes and schedules. You may have to do it for them at first and then, as they learn to do it for themselves, be there with them to support them while they do it. A lot of people are like me – sometimes I’m afraid to ask people things because I’m afraid they’ll think I’m stupid. So to avoid being humiliated it’s important to have the staff person first call the transportation agency to ask how the person can get from one place to another. And then support them to do it for themselves over time. Another thing that helps me now is limited mobility bus passes – my waiver pays for my bus passes – and if services can access those for the client it’s helpful. When agencies or schools are working with people who are just beginning to learn how to get around their community, it’s important to support people until they feel comfortable doing things for themselves. For me it took two or three months before I felt ready and comfortable traveling by myself. And it’s also helpful to provide people an information card to show transportation providers about where they live so that if something happens, like they get lost or confused, someone can help them get home. This might also help bus drivers to better understand what the person needs and that they have a disability and that’s the reason for them asking for assistance. And teaching people ways to stay safe and not get hassled when they’re out traveling by themselves is helpful. I’ve learned to do things like sit close to the driver and find something to do on the bus that keeps me occupied enough that nobody will bother me (like listening to my CD player).
In the past I wouldn’t go anywhere unless I could find someone to go with me and give me a ride, or I was going to meet somebody. Now I’m more comfortable traveling by myself because I have more options and know how to use them in ways that work for me.