Getting a Job Can Be Both Alluring and Dangerous
There are many reasons to secure a job. The process is often not simple or quick and can lead to many risks along the way.
Why Get a Job?
Unlike the general public, securing a job is not just about the money. I'll never forget seeing our daughter, Gwendolyn's, exuberant face when she landed her first job and especially when she finished her first day of work.
Independence for people with Down syndrome is about achieving their ambitions, ambitions often rooted in what they observe around them. They see mom and dad go off to work, siblings get jobs, and TV friends working various jobs. They want the same. They may not comprehend why they can't achieve the same...nor do I.
Beyond replicating securing a job like their family or friends, work is an important catalyst for their ongoing independence path. Our loved ones revel in a sense of responsibility, being treated as adults, building skillsets around the tasks they will do, and in expanding their social network to include co-workers, managers, and customers. A job plays an especially essential role when their high school career is over. Suddenly, the learning and engagement they experienced every weekday disappeared. If they can't replace such interaction with others through a job or post-high school continuing education, they may actually lose some of the skills and confidence they've built up - a phenomenon termed Regression syndrome.
How to Find a Job?
Perhaps the most important piece in the toolkit is mindset. You and your loved one must recognize the skills and energy they bring to a job. They are not offering a charity but the interest and ability to successfully complete important tasks that often go overlooked by the rest of the staff. And if the manager and staff don't recognize the value, I would encourage you to move on to the next opportunity.
Every state/city offers public assistance to find jobs through the US Department of Education's Vocational Rehab services. I encourage you to connect with your local agency early to establish rapport. Your loved one needs to share skills, tasks, environments, and types of jobs they may be most interested in. The VR representative must understand these interests and represent them as they help look for jobs.
Prospective jobs may include school assistant, hospital assistant, food prep, library assistant, office clerk, zoo or animal shelter assistant, and volunteering, to name just a few.
Either the family and/or the VR rep can help pull together a résumé and cover sheet based on the job they are looking for as well as practice for interview questions.
When you start to "knock on doors" be sure to seek the "right" job, Don't be satisfied with just any job. If the environment is not right, if the support and rapport with managers and co-workers don't feel genuine, keep looking.
While you may have success with your VR rep, unfortunately, many have a tall stack of cases and just aren't able to spend the necessary time to help your loved one secure the right job. If this avenue doesn't pay off, be prepared to roll up your sleeves and find the right job yourself.
Job Searching On Your Own
Create a résumé with your son or daughter. Brainstorm job prospects based on current skills, hobbies, and interests. Identify your circle of friends who may own a business or be a hiring manager. These are great prospects. And, if necessary, start knocking on doors. With your son or daughter and equipped with your résumé, approach target businesses. Introduce yourselves to the manager and share your interests. Some managers will have little interest or time to spare but if you approach ten different establishments, you are bound to identify good prospects and positive relationships.
Let your son or daughter lead the way. Encourage them to ask and answer questions. It builds skills and confidence for your child and helps the manager see the capabilities of their prospective new employee.
Even if they are offered a job, if it doesn't feel right - safe, secure, supporting, and engaging - they should pass. It will not be worth the grief or frustration of all involved.
Orientation & Training
Whether formal or informal, spend some time with the manager to discuss work days and hours, pay schedule, and any limitations to ensure benefits are preserved (see below), While the primary relationships should be maintained between your son or daughter and their boss, be sure that work has your contact details. Discuss if there are some skills that you may help build and support at home. Be sure they can contact you to discuss any issues or opportunities to expand your loved one's role.
Some businesses provide on-the-job training for all new employees. It is worth preparing your son or daughter for work and also for helping the workplace to understand skills and approaches that work best with your child. You may consider joining in on the training or hiring a job coach for initial training. Be sure such a coach is not only developing the skills and know-how of the new employee but of their co-workers and managers too.
Commuting
Certainly, take into consideration the commuting requirements for work. Perhaps this favors looking at jobs near the house or one short stop away on public transport. Maybe hours can be adjusted to align with your work and commute times. Maybe a co-worker could help with transportation if they live nearby and you cover some gas costs. Securing a job that your loved one just can't get to/from or that is quite inconvenient or unsafe will not help support a sustainable work situation.
Job Risks
I will highlight two common job risks:
Abuse & Harassment: this is not uncommon. In fact, over 60% of people with intellectual/developmental disabilities are the subject of abuse - including verbal, physical, sexual, and/or emotional. Be cautious. Get to know the managers. Pop into the workplace unannounced at times. Ask your son or daughter how things are going, if they are happy, if there are any uncomfortable situations, etc. Be sure the manager is aware of this statistic and keeps a wary eye out for such abuse.
Financial Benefits: At the age of 18, your son or daughter with Down syndrome should be eligible for Supplemental Security Income (SSI) and associated Medicaid along with eligibility for Medicaid Waiver Programs and connection to the parent's Social Security at the time of their disability, retirement, or death. However, this full package is at risk when your loved one begins to work. You must be familiar with the maximum earnings and asset levels because if they exceed either, they may lose the suite of benefits forever! In 2024, the maximum earning (gross revenue) is $23,320 or $1860 per month. Additionally, they cannot exceed $2000 of assets in the form of bank accounts, credit cards, stocks or bonds in their name, etc. The earnings level is not really an issue for those working 5-10 hours but if hours accumulate, you should pay attention to the details. If they are paid every other week instead of twice per month, they may end up with a third paycheck in a month. If that also coincides with a raise and/or a holiday bonus, suddenly they may find they have exceeded the earnings cap. It is not up to the employer to manage these levels but to the individual and family. ABLE accounts can be quite useful in protecting income and avoiding asset limits. Only exceed these monthly earnings and asset limits if you are confident your loved one can maintain a sustainable living through their own income and any family supplements for the long haul. If you don't believe this can be the case (as most families don't), they ensure you monitor and maintain these limitations. It could cost you hundreds of thousands of dollars or more if they lose their SSI and related benefits.
Securing the right job is an essential component of your loved one's independence plan. These opportunities help build skills and pride but should also be managed to avoid the potential risks of such employment.
Want to Learn More?
Check out our diverse blogs split out by age ranges
Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.
Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.
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The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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