When our children are tiny and face a serious diagnosis, we parents tend to tie ourselves in knots worrying over "some day." Will they have friends? Are they going to be okay? Can they have a job, live on their own, get married, and start a family like their peers? Will they even make it to adulthood?
Suddenly, those questions become as imposing in the teen years as facing down an oncoming freight train. These years, the details of "how" and "where" become much more stressful. We want our children to participate in life at an appropriate level to the best of their abilities.
This year in addition to issues of self-care and responsibility, my son began exploring employment possibilities. While he has had a regular lawn-mowing job for the past year, he was much more eager to earn a steadier income. Because of his diagnosis, this became a much more complicated issue than it was for his older sister at this same age. The jobs he was willing to look at were different because of his health.
While we have NEVER been ashamed of our son's condition, we did have to share with him the reality that he ought to keep his medical status confidential, because potential employers do still discriminate. The Americans with Disabilities Act of 1990 (ADA) DOES set forth protections for our children in employment. Nevertheless, our family has learned the hard way that proving this discrimination in a court of law can be tricky.
Disclosure becomes a very complex issue for our kids with employment. Some of our children cannot help but disclose their diagnoses or needs because they have visible challenges and will need appropriate accommodations in a job. The law requires that is provided to them. Yet, this becomes murky as our children have less obvious, more subtle, well-managed diagnoses.
On completely different note, some of our kids who are non-verbal or more physically and cognitively challenged may not be able to search for a job on their own at all. They require adult assistance every step of the way.
Here are the things we MUST clarify for our kids in helping them grow towards meaningful work:
- Have a good understanding of your child's limitations and capabilities. - We absolutely have to have realistic expectations of what our child is capable of on the job. For example, my son would be much less likely to take a more physically demanding job that could put him at undue risk for internal bleeding. Even considering a child's mental health temperament is critical. We don't want to put our child in a high-pressure job at a place where we know the employer has a reputation for being harsh when they don't have adequate coping skills developed yet.
- Know what your child would like to do. - Two of my children are adamant about not wanting to work in food service. It is helpful to have that mutual understanding in advance. It is also helpful to provide our kids with the support and encouragement they need if they have their sights set on certain places of employment. If your daughter really wants to work at a grocery store, you can point out multiple places where she might apply.
- Bring in extra help where it is needed. - Every state has a Division of Vocational Rehabilitation or DVR. If your child has physical or cognitive challenges to a level of significance that would make it difficult for them to find or keep a job, this department of state social services is where you need to connect. For example, our home state of Wisconsin has a whole host of services where DVR connects with schools and interfaces with potential employers to get teens working. I have seen it open up new possibilities for kids. Likewise, I have seen it frustrate some parents because the choices and understanding offered by DVR can be limited.
- Be aware of your child's rights. - The ADA was intended to assure that people with disabilities could participate in life to the fullest. This includes your child's entitlement to engage in meaningful work. Start reviewing the facts on the US Equal Employment Opportunity Commission's web page "The ADA: Your Employment Rights as an Individual With a Disability." Additionally, the Genetic Information Nondiscrimination Act of 2008 (GINA) assures that employers MAY NOT discriminate in any aspect of employment based on known genetic information. This is especially critical for families like ours who have members with rare and genetic illnesses. (No wonder we were involved in advocating for the legislation in Washington, DC years ago!)