The Bus Doesn’t Stop Here Anymore
When our children with Down syndrome are young and in school, some of us hate the stigma of the “little yellow bus” transporting them to and from school. Instead we might try the big “regular ed” bus, or have them walk to school. Or maybe we just drive them. Anything but having that “dreaded” special education bus stopping at our door.
The rude awakening comes when our kids turn 21 and ages out of the school system. Mandated services come to a screeching halt. Most of our children don’t drive. All of a sudden we wish we had ANY kind of bus available to get our young adults from here to there or anywhere.
In the majority of the suburbs of Chicago and actually in most areas of the United States there is no public transportation available for anyone; therefore there is none for our sons and daughters with Down syndrome. We have worked very hard to have our children integrated with their peers, have active social lives, become as independent as possible and hopefully have employment in their community. Unfortunately in adult life none of that can work without transportation.
I personally was aware of this problem, so when my daughter, Angie, attended the Transition Program in our school district at age 18, I was delighted they were teaching her to take a cab. Unfortunately she had one bad experience with a cab driver, who tried to get her to give him all the money in her wallet. She fooled him, read the meter and gave him the exact amount. “No tip for him!” she told me. She did just what she should, but she never wanted to take a cab again.
For 2 years we juggled getting her to and from work between family and friends. To say the least, it was a challenge.
Angie and I decided to take our problem to our Township Mental Health Board. Each of us presented our own perspective, hers being, she was sick and tired of being so dependent on others, mine, that I was frazzled, scheduling 8 to 10 trips per week with myself or others transporting her back and forth to work. The Board was surprised as they felt they were doing their part in funding a PACE bus to transport township residents with disabilities to the sheltered workshop in Elgin.
We were happy to hear they were serving those people, but we let them know that Angie and many of her friends who had recently graduated were either hoping to or already working in the community with no transportation available. We were looking for help in finding safe, reliable and affordable transportation for these young adults.
Surprisingly, we were able to spark an interest. The Director of Community Mental Health for the Mental Health Board of Hanover Township, Danise Habun, rounded up a committee of service providers, transportation experts, and community members interested in the issue of transportation. Angie and I were the only family members on the committee. The 1st meeting was in the fall of 2003. We attended every meeting and were delighted that over 50 people met monthly with a focus on transportation to and from work and job training sites. The committee developed a survey and distributed it throughout the township. This is how the TIDE (Transportation keeps Individuals with Disabilities Employed) Project began. We had a lot of good press which really picked up on the fact that Angie was speaking up on her own behalf, asking for help in becoming a more independent adult.
The TIDE committee looked at different possibilities. We finally came back to the only affordable plan being a subsidized taxi service. We found a taxi company that does background checks on their drivers and who assured the parents that they could provide a safe means of transportation for our young adults.
On July 1, 2004, Angie was the first adult with a disability to “Catch the TIDE” and take a ride to work using the vouchers that she purchased from the township. (The riders buy the vouchers from the township for half the cost of their trip to and from work and the township reimburses the taxi company for the full trip.) Every Saturday Angie calls in her pick up times from home and work for the upcoming week. She is so proud and confident and most important she’s not afraid anymore. I am delighted to see how this newfound freedom makes her feel (not to mention enjoying my own freedom!).
It is important for our families to work at solutions to the barriers that prevent our loved ones with Down syndrome from being as independent as they can be. Sometimes this takes some effort because we can’t always rely on someone else to pave the way.
There is no better Public Awareness about Down syndrome than letting the community see our sons and daughters as capable people who want to work and recreate and have real lives, just like everyone else. Letting them stand up and speak for themselves is sometimes scary but very effective.
To find out what public transportation and supplemental financial support is available in your area, contact your township office or local government organization.
NADS News, January, 2005