National Disability Employment Awareness Month 2018

October 25, 2018

One GFPD Family’s Experience with Customized Employment

 

     This October, the Global Foundation for Peroxisomal Disorders(GFPD) joins organizations and employers around the country to celebrate the contributions of workers with disabilities. October is National Disability Employment Awareness Month(NDEAM), an awareness month led by the Office of Disability Employment Policy(ODEP) The ODEP is an agency that works to promote policies and increase workplace success for people with disabilities, and they describe Customized Employment as follows: “Customized Employment is a flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized match between the strengths, conditions, and interests of a job candidate and the identified business needs of an employer. Customized Employment utilizes an individualized approach to employment planning and job development — one person at a time . . . one employer at a time.”

Here, TJ uses an adaptive broom to clean floors.

 

     GFPD family members, Katie and her son TJ Sacra, have their own story to tell about Customized Employment. TJ is 18 years old, and has a rare genetic disorder called peroxisomal biogenesis disorder-Zellweger spectrum disorder, more commonly referred to as a peroxisomal disorder. This disorder limits TJ’s ability to obtain traditional employment, but his mom, Katie, knew that employment for TJ would be important for her son.

Katie says of TJ’s work, “Customized Employment (CE) is important to our family because it plays such a big role in our son’s quality of life. The focus on our son's strengths and preferences are what sets CE apart from the traditional approach to employment for people with disabilities.” Traditionally, employment for individuals with disabilities has been more system-centered, but Katie explains that Customized Employment is more person-centered. “The traditional approach makes it not only challenging to try to match people with disabilities to available job opportunities, but it sets up individuals to be hired into positions that may bring them no joy or sense of purpose. I do not want that for anyone, let alone my own child.” Instead, Katie partnered with local employers to focus on TJ’s strengths. “Focusing on my son’s preferences and abilities allows us to find experiences for him to show us what he can and wants to do. We build on these discoveries to help us identify how this can benefit a business or employer. We strive for this because we want the best quality of life for TJ.”

TJ with his first ever tips from working at Scrubby's Car Wash.

 

     So far, TJ has matched with several area businesses. Every Monday, he works at Scrubby’s Car Wash where he greets and hands out air fresheners to customers, as well as helping with washing, drying, folding and restocking towels. He also joins the Surfside Beach Fire Department to clean the floors with an adaptive broom and helps with their shredding and recycling. TJ’s favorite job though is working at Backpack Buddies. TJ helps stock bins that will be used to fill children’s backpacks with food, he is learning to break down boxes, and he takes out the recycling.  “We know Backpack Buddies is his favorite because TJ signed work for the first time ever in June, and he brought us that object card from his word wall when he wanted to go to work,” Katie tells us. For a young man that is nonverbal, this was huge for TJ and his family.

 

Tactile object cards from TJ’s word wall allows him to communicate with his family.

 

     It wasn’t always an easy path for TJ and his family to find mutually beneficial workplaces. Last year, TJ tried cleaning pews at a local church, but it turns out he didn’t like dusting. He also tried working at a fast food restaurant, but he isn’t quite ready for that atmosphere. “He’s building those skills now at school by going to the cafeteria and stocking the utensils and condiments. We are going to try another restaurant soon,” says Katie. When asked about the challenges of Customized Employment that her family has faced, Katie explains, “Our experience with Customized Employment has been extremely challenging and frustrating yet equally rewarding too.” The lack of knowledge about Customized Employment has meant a lot of obstacles to overcome along the way as well. “I think CE is an exceptional option for individuals with disabilities, especially for individuals like my son, who have multiple and significant disabilities. Unfortunately, despite great efforts, I believe it is still extremely difficult for individuals with disabilities to be hired. I think we have come a long way and we still have a long way to go. I, along with so many others, am doing my best to help educate others about CE. It is not just a job. It is about a person. It is about bringing purpose and joy to peoples’ lives.”

  TJ helps take out the recycling each week at his job with Backpack Buddies.

 

     Katie acknowledges that Customized Employment isn’t a perfect solution for every family. “We know that Customized Employment will look different for different individuals. We acknowledge how the unpredictability of peroxisomal disorders would even change this for our own son at any given time.” Katie knows that a progression in TJ’s disorder could change or limit what he is able to accomplish at a work site. Despite this concern, Katie likes to share a quote by Dr. Jan van Dijk, “My definition now of quality of life is: moments of joy.” Katie goes on to explain, “Right now, at this time, we have identified Customized Employment as the path that is leading TJ to these moments of joy.”

 

For more information:

 

For further reading on peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD)

 

Are you the caregiver of a patient diagnosed with PBD-ZSD? Join our patient registry!

 

To stay up to date on the GFPD’s news and research updates, follow us on social media on Facebook @GlobalFoundPD

 

 

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