Tuesday, June 9, 2009

'The biggest disability we have is low expectations'

I had the privilege of interviewing Janet Steffy, mom to Joe Steffy, who operates Poppin’ Joe’s Kettle Korn in Louisburg, Kansas this morning. Joe, 23, has down syndrome and autism, and was the focus of a recent U.S. News and World Report story: How 1 Autistic Young Man Runs a Business.

Joe communicates with gestures, pictures and a voice-output device, and is a shining example of how a young adult with significant disabilities can own and operate a business.

Janet and her husband Ray, retired farmers, have a message of hope for parents who fear their children won’t find productive work as adults.

They've certainly inspired me to look more closely at the idea of setting up a business one day for my son Ben, who has disabilities.

Me: When Joe was in high school, what were your hopes and fears for his future?

Janet Steffy: When Joe was 14 the transition team came into a meeting with a plan already put together: Joe would live in a group home as an adult and attend a workshop. Period. There was no discussion. Our nightmare was that because Joe is high energy and doesn’t sit still, he’d end up somewhere sedated, isolated and separated from the community.

Me: How did you respond to the school’s recommendation?

Janet Steffy: I was angry. But as parents, we can internalize these negative messages and become angry and bitter, or we can take positive steps to act on our child’s strengths and build on them. The biggest disability we have is low expectations, and that’s greater and more disabling to Joe than any disability that he was born with.

Me: How did you get the idea that Joe could run a business?

Janet Steffy: Ray took a Partners-in-Policy-Making class offered through the Kansas Council on Developmental Disabilities. One of the speakers was David Hammis (an advocate for self-employment for people with disabilities). He showed us how a person with significant challenges can operate and own a business – and still remain eligible for the Medicaid supports Joe will need for a lifetime. For Ray and me, it was like a light at the end of a dark tunnel. He showed us a model, and that’s what we built.

Me: How did you come up with kettle corn as a product?

Janet Steffy: Our family went on an Alaskan cruise when Joe was 14 and at a farmer’s market, Ray saw a long line of people waiting for kettle corn. We had never heard of it. Ray saw the different parts of the popping process and his mind started turning. After talking to the owner we purchased used equipment locally and started what we called a job exploration: “Can Joe work?” We set up in the driveway out of the garage and started popping and developing a product we were satisfied taking to the public.

Me: How hard was it for Joe to learn the ropes?

Janet Steffy: Joe learns by watching, he will do exactly what you do, and that is his strength. There are many processes in popping: setting the equipment up; filling the raw material into the containers to pop; measuring the ingredients and putting them in the kettles; stirring; dumping the kettle; sifting; letting it cool; bagging it and sealing it. As a result of his autism, Joe is very repetitive, exact and precise, and that was something to build on.

Me: Is Joe interested in the operation?

Janet Steffy: Joe is interested in many things, and as long as it’s something he can be active and moving and busy at, he’s busy. It took him a year or two before he got into the actual popping. We have a rule that if Joe owns the business, Joe picks what he does. If he hires you to help, and says “today I’m bagging,” and you’re doing the bagging, you do what he was doing before. We shift around what Joe is doing.

Me: Does Joe have a support person with him?

Janet Steffy: He has a support worker and his dad is the manager and also helps with part of it. Joe works five days a week, from 9 to 3. We have a licensed manufacturing site in our walk-out basement. Joe doesn’t live at home anymore – he rents his own small home and a support worker lives with him. He’s a taxpayer – isn’t that cool?

Me: Where do you sell the kettle corn?

Janet Steffy: In the summer he works at festivals and events and year-round he stocks six retail stores that buy his products every week. He has five flavours.

Me: How challenging has it been for you as parents to support Joe in the business? Are you retired?

Janet Steffy: Yes, we’re retired. It’s a mindset. We have to do it. We supported Joe’s sisters and brothers, doing the extra things that made it possible for them to do sports or music and we’re committed to doing this for Joe as long as we can. It does take an investment, but as a parent, you can spend your energy fussing and fuming because professionals don’t see potential in your kid, and you have a kid sitting around with nothing to do, or you can use your energy in a positive way. Then you’re happy, your son or daughter is happy, and your whole family is happy.
Me: How did you finance the start-up of the business?

Janet Steffy: Joe received over $20,000 in grants through national and state programs, including Social Security Administration’s Plan to Achieve Self-Support Program (PASS), Vocational Rehabilitation and the Kansas Council on Developmental Disabilities. We had to submit a five-year business plan.

Me: What impact has the business had on Joe?

Janet Steffy: I wish we had a before and after picture. He used to be a young man whose shoulders drooped, his chin was down and he was pretty sombre. Now he stands tall, with a smile on his face. He knows he’s contributing. When he’s out in public at a festival he loves stirring the kettle while people watch – he loves being Poppin’ Joe. He loves the identity and feeling of belonging with the other vendors he’s gotten to know at the festivals over the years. I love it when he goes to the bank and the clerk counts the money out with him. Joe knows that because he works he has his own small home. He has a golf cart and he knows it’s because he works. We have four to six part-time people who come in to help and Joe pays them – he signs the cheques and gives them the money. People look at him differently.

Me: What advice would you give to other parents who may be concerned about their child finding meaningful work?

Janet Steffy: Commit to your dreams and go for it. It won’t happen if you don’t step up to the plate with your son or daughter. Look at your child’s strengths and capacities and build on them. So often at meetings we’re reminded of everything our kid can’t do: he can’t do this, and he can’t do this. It’s so negative. Remember that the professionals who tell you what your child can’t do won’t be players once they’re out of school. And you’ll still have your son or daughter. Write out your child’s strengths and capacities and go for it. Help them to choose a business they love. There’s a young man in Kansas with autism who owns a lawn-mowing business. He just loves mowing grass and is doing so well. There’s another where the whole family is involved in a honey business with bees. These young people are vibrant, they’re alive, they have a purpose to get up in the morning. They have something to do, a place to belong.


Love this interview! And I love Joe's Kettle Korn too, I can tell you personally that it's delicious!


Thank you Jennifer! For our readers who don't know Jennifer, she has a blog listed under our "Blogs to Follow" called Pinwheels, and is the author of Road Map to Holland, a beautiful and candid account of the first two years of her twin sons' lives -- one of whom has Down syndrome. I'm reading it now and it's fabulous. You can borrow it from Bloorview's library at 416-425-6220, ext. 3517, or order through Chapter's or Amazon. Thanks Jennifer, Louise