How Siblings Can Support Individuals with Disabilities in Employment
By Amy Halm
About the Author
Amy Halm has served as the project manager at the Sibling Leadership Network since 2016. This position brings together Amy’s professional passion and personal commitment to the sibling experience. Amy is a licensed clinical social worker and graduate of Illinois LEND (Leadership and Education in Neurodevelopmental and Related Disabilities.) Amy grew up in North Carolina with her younger sister, Emily, who has Down syndrome. After living 800 miles apart for most of their adult lives, Amy is thrilled that she now lives less than a mile from her sister and parents and can be together for important events and everyday happenings, like drives together to work.
Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.
My younger sister, Emily, has always been a great employee. Since the time she could start working, she has always had a job. She loves to interact with people, she is fiercely loyal to her employers, she has a great work ethic, and she has Down syndrome.
Three years ago, Emily and our parents moved to Illinois where she currently works as a bagger at one of the local supermarkets, Mariano’s. Emily, now 40, works approximately 16 hours a week. Although our parents are her primary transportation providers, I enjoy driving Emily to and from work on a regular basis. On the way to work, Emily is in a great mood — we usually sing together and catch up on how things are going. She asks for help with securing the wrist buttons of her shirts. Oftentimes I help her with her tie or putting her hair in clips.
Emily has worked for more than 22 years. Our parents always wanted Emily to be employed in a meaningful way, and she loved participating in high school work training programs and summer internship programs through our local Arc. The training and internship programs exposed her to a wide range of employment opportunities in retail, restaurants, hotels and on a farm.
Emily’s high school IEP team, with the encouragement of our parents, was committed to employment goals during her transition planning. During Emily’s final year of high school, she had two part-time jobs, and she maintained those positions well beyond high school. Over the years, Emily has held a number of different part-time positions, in different settings, in different places that she has lived. She prefers to work in stores because she likes to keep busy and loves to interact with people.
I’m delighted that Emily is able to work and enjoys her job, and I have not had any concerns about her being employed. I love watching Emily in action when I go inside to shop. Employment is part of Emily’s identity, and she is truly at her best at work. She’s my sister at home, but she’s an employee at her workplace, and I learn a lot from seeing her in her professional mode. When I see her interacting with her co-workers and her customers, I know that Emily is perfectly matched in her position
My sister and I play important roles in each other’s lives. Siblings often have the longest-lasting relationships of their lives with each other. As parents age,siblings often fulfill greater supportive and caregiving roles for their brothers and sisters who have disabilities. This support can include many areas such as voting, transportation, health care and personal relationships.
One area of support that is vital toward helping brothers and sisters lead self-determined lives is employment. We want our siblings to have autonomy, financial stability, and the sense of purpose that we enjoy in our own jobs. Frequently, brothers and sisters can use their connections, relationships and social capital to assist their siblings with disabilities in finding and enjoying a job. As similarly aged workers, siblings have a unique understanding of the job market and how to navigate the technology associated with job acquisition. Siblings can provide insights into the current climate of the workplace environment.
Siblings can also play a vital role in supporting their brothers and sisters who are successfully employed. For siblings living nearby, or in some cases together, assistance can be provided with the day-to-day activities: transportation, choosing outfits, making lunches. For out-of-town siblings, support can be provided by through phone calls, text messages or email to share work concerns and successes.
I am part of the Sibling Leadership Network, a national nonprofit whose mission is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote the issues important to them. We welcome siblings, parents, people with disabilities, sib-in-laws, and professionals to join us to learn more. Check out https://siblingleadership.org/. Our website offers resources on a variety of topics, including employment.
I very much appreciate Amy taking the time to share her story of Emily’s work experience and how siblings can help support individuals with disabilities in their employment and in living life the way they want to live. I think many of us who are parents fail to recognize the importance of siblings in the lives of our sons and daughters with disabilities, but I also think we sometimes fail to see the importance of our child with a disability to the lives of their siblings. Often, siblings can encourage and motivate their sister or brother in ways that we, as parents, cannot. I would encourage any adult sibling to check out the Sibling Leadership Network. The group’s annual conference is June 22-23, in St. Paul, MN. It’s a great way to connect with folks who have similar lived experiences and to learn more about resources for siblings and family members. Learn more at https://siblingleadership.org/2019-sibling-leadership-network-national-conference/