Impact Feature Issue on Employment and Women With Disabilities

Our daughter, Stephanie, was born with Down syndrome, and additional significant health problems, in 1969. At that time people with disabilities were being moved from large state institutions to smaller community group homes, or were remaining within the family. In one of life's ironies, both mom and dad earned teaching degrees in special education at the same time. Given this, it was natural for us to jump right in, not only as first-time parents, but also as advocates, to make sure our daughter had the same opportunities and experiences other kids had. We were determined that she would grow-up and play with the neighborhood kids, attend our neighborhood school, and begin her adult life working competitively. This focus had an impact on our expectations, on her employment, and on her independence.

Raising Stephanie as Part of a Village

Stephanie was born on the cusp of new federal legislation. The Education of All Handicapped Children Act (now called the Individuals with Disabilities Education Act) required schools to integrate students with disabilities into mainstream education. By the time she was a young adult, the Americans with Disabilities Act and transition legislation were enacted. Transition laws required support for students as they planned for and moved from high school to post-secondary education, employment, and adult living. These legislative milestones opened the doors for Stephanie. She was fully included and supported in the schools as well as in the community as she matured.

Although we were surrounded by special education during the day (we both taught in the public schools), our family and home life involved lots of travel and social get-togethers, and we expected Stephanie would be a part of it. We believed she would get to know the world just as the world would get to know her. Remember, it wasn't so common then to see kids with disabilities at the neighborhood pool or taking dance lessons at the YMCA. We intentionally did not seek out "special" lessons or play groups. We expected that even though it might be tough sometimes, Stephanie would need to learn how to navigate the world. As a result, she became comfortable and accepted in the same places as other young people.

In high school, Stephanie had a picture-perfect transition to her adult life. Although transition IEPs were still in their infancy and transition planning was still a steep learning curve, we used our dual roles as special education teachers and parents to become partners with the school staff. Minneapolis schools already had in place an extensive community-based vocational training program. Stephanie participated in numerous job try-outs to develop job skills and to learn about her strengths and interests. Job coaches supported her on those sites. They evaluated her interests and preferences and helped her develop work and social skills related to employment. A transition course at the local technical college bridged the gap between high school and postsecondary education. Office and clerical classes also provided Stephanie with accommodations. Stephanie participated in an independent apartment living training program and she joined several social groups to continue her active social life. The social groups and peer friendships were very important to her, and she learned to move easily between her worlds of people with and without disabilities.

By the time Stephanie finished high school in 1990, we had on board all of the adult service agencies that would be supporting her: the county social worker, a vocational rehabilitation counselor, and an employment services agency for job support. Her physicians' recommendations were also an integral part of the planning. The team determined that Stephanie was well-suited to office and clerical jobs. Her final transition meeting was held at the Arthritis Foundation where she was offered her first job; the foundation staff were so impressed with her work while she was still in high school that they hired her immediately after graduation. Picturing this large team of people - school staff, work staff, adult service agencies - with Stephanie sitting in the middle of this huge conference table being offered a job, still brings a smile. What a thrill it was for all of us. We had succeeded.

As I look back over the past 39 years, the saying "It takes a village to raise a child" has been in place as we raised Stephanie and prepared her for success in the workplace. Even with significant health issues and physical limits, she has been successfully employed since graduating from high school, working with modifications as a clerical assistant or office support staff in both non-profit organizations and competitive businesses. She continues to be paid competitive wages. There have been bumps along the way of course - jobs lost due to cut-backs or restructuring, or Stephanie decided to move on. She held some temporary volunteer jobs while looking for paid employment, and those experiences helped to broaden her skills.

On the Job Today

Currently, Stephanie works 20 hours a week divided between two part-time positions. Monday, Wednesday and Friday she works at the University of Minnesota, at the National Center on Educational Outcomes, as office support staff; Tuesday and Thursday she works at a law firm as office support staff. When asked what she likes about her jobs, she says "I like my co-workers a lot; they are friendly. And I like to do a variety of things such as working on the computer, putting together training packets and helping with other projects. And I do like the money part." Doing a good job at work is important to her, and she says that she's successful because she has a lot of practice working in offices and can get support when she needs it.

Some factors that have guaranteed successful employment for Stephanie are these:

• She receives support from supervisors who communicate expectations and provide feedback.
• The jobs are well designed, they fill the employers' needs and are matched with her skills and physical limits.
• Co-workers are friendly and fun, and include her in work and social events.
• Job tasks are varied.
• Employers are willing to do what it takes to ensure success.  

Intrinsic qualities Stephanie has that also contribute to her success are these:

• She's a good self-advocate and great problem solver.
• She's wonderfully funny, loves social interactions and has great social skills.
• She's motivated by having her own money, wants to pay her own way, and pays her rent and other bills.
• She's willing to learn new tasks and to take risks.
• She has strong self-determination.
• She has a strong work ethic and wants to do a good job.

Lessons from Our Experience

Some strategies for raising Stephanie that may have contributed to her success in the workplace, and that may be useful to other families, are the following:

• We had high expectations for her, including that she would learn to read, write, and have functional math skills as well as appropriate social skills.
• We expected teachers would be our partners.
• We understood that the world isn't always accepting of differences and it might be hard for Stephanie sometimes. We tried to prepare her for disappointments.
• We worked cooperatively developing plans with adult agencies.
• We understood that the best of plans are just that, a plan on paper. Financial cut-backs, changes in resources, and restructuring can interrupt or change a service. Direct care staff come and go frequently, so we remained involved in recruiting, training, and retaining good people.
• Because of disability legislation, we were able to effectively advocate for the services and supports she needed.
• We continue to try to balance and respect Stephanie's need to be independent with our need to ensure her safety and health. This includes regularly consulting with her physicians and relying on their support.

We continue to be so proud of Stephanie. We love her giggle and her wonderful sense of humor. She has a strength and resolve to live fully, and she doesn't miss a thing.