Watching Tim Harris, the owner of Tim’s Place, bear-hugging President Barack Obama during his Special Olympics tribute on television reminded me of my Uncle Tommy.
Tommy, like Tim, was born with Down syndrome, a condition in which a full or partial extra copy of chromosome 21 exists. It is the most common genetic condition in America.
My grandparents, ignoring the all-too-common advice in 1937 to send Tommy to an institution, welcomed Tommy as the youngest of the family.
At the time, my grandfather was a Rotarian and Shriner, and the organizations were the largest sponsors of services for children with disabilities in the country.
When Tommy reached school age in 1943, no school would accept him. But he went everywhere with my grandfather, whom he adored.
When my grandfather died, Tommy stopped talking.
Years later, Tommy worked in a sheltered workshop. He didn’t like his assembly job; he was slow and, as with most people with Down syndrome, he experienced shortfalls in motor planning and coordination.
His pay, based on his production speed, was far below minimum wage. He didn’t make friends at work, as he had little experience working with others and no interest in talking.
He decided he would rather be home putting together jigsaw puzzles — his lifelong passion — and his family agreed.
Everything considered, Tommy had a comfortable life with a loving family. He outlived his parents and his caregiver brother, living with his sister-in-law Mary Buente McMahan until he died at age 65.
Tim Harris also lives with his family. He graduated from high school in Albuquerque and earned certificates in food service at Eastern New Mexico University.
Keith and Jeannie Harris, as part of a trust for their son’s future security, opened Tim’s Place, a restaurant where Tim works and provides hugs (59,000 so far) to customers.
It is good Tim’s parents are planning for his future, as life expectancy for the 400,000 people living with Down syndrome has dramatically increased from 25 years in 1980 to over 60 years today.
Surprisingly, the Workforce Innovation and Opportunity Act steamed through Congress this summer and was signed by the president.
The act includes provisions for customized employment — an idea similar to the business model for Tim’s Place — fashioning specific abilities of the individual to the business needs of the employer.
The measure also sought funding for students’ work-based learning experiences.
Veronica Deleon-Dowd, director of the New Mexico Division of Vocational Rehabilitation, said the state is training staff to work with special education and employers. She also said the division can help graduates keep Social Security, too.
The law will restrict schools from contracting with subminimum wage providers. A consent decree earlier this year was settled with the state of Rhode Island for unjustly setting apart individuals with intellectual disabilities in sheltered workshops and adult day programs.
Patricia Elmer, director of special projects in Santa Fe Public Schools’ special education department, said the legislation is encouraging. She pointed out that at age 14 all students have an individualized education plan that includes transition services.
Finding and securing employment for individuals with intellectual disabilities will require planning.
There is strong evidence that students with disabilities with paid work experience in school will get jobs after they graduate. Discovering work that matches with a student’s interest is worth the time.
Here are some tips that might help:
• Start early and offer children choices of chores to do at home.
• Let children finish a job, even if it takes longer, because it builds pride in work.
• Patient prompting and step-by-step instruction with positive reinforcement will support learning.
• Family, friends, neighbors, colleagues, customers and business associates are good sources for student work experiences.
• Look for work experiences that match your child’s recreation, entertainment and leisure interests.
• Try lots of different types of jobs.
When you enjoy doing something, there is a good chance you will master it. Getting paid is icing on the cake.
Andy Winnegar has spent his career in rehabilitation and is based in Santa Fe as a training associate for the Southwest ADA Center, a program of TIRR Memorial Hermann in Houston, Texas. He can be reached at firstname.lastname@example.org.