In 2019, 61 million adults in the United States reported that they live with a disability, representing 26 percent or 1 in 4 adults, according to the Centers of Disease Control and Prevention.
Every October, National Disability Employment Awareness Month (NDEAM) offers us an opportunity to celebrate the many contributions of people with disabilities to America’s workplaces and economy. Led by the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), NDEAM also showcases supportive and inclusive policies and practices benefiting workers and employers.
More than 70 percent of working-age people with disabilities are left out of the workforce and there is a need to create more access to employment opportunities. The 2022 theme is “Disability: Part of the Equity Equation” encourages organizations of all sizes and industries across the country to support this important mission by fostering a more inclusive workforce.
For Jennifer, her son Neal is her ray of light. Jennifer and her husband Lou adopted Neal from China when he was 21 months old. His Chinese name is Xiaoliang, which means ray of light, and is now his middle name.
Shortly after coming home, the couple learned that Neal had some medical issues.
“Neal was diagnosed with a submucous cleft palate, which occurs when muscles in his palate do not fuse during fetal development, which caused challenges with eating and talking,” says Jennifer, who is a reference librarian and public inquiries coordinator working on the contract for the Environmental Protection Agency’s Office of Transportation and Air Quality.
“He would drink milk and get milk into his lungs,” she recalls. “It caused a lot of complications and he had constant ear infections.”
Then at two years old Neal began having seizures, which required him to be hospitalized and to have additional testing.
Neal was diagnosed with Smith-Magenis syndrome (SMS), which is a developmental disorder that affects many parts of the body. The major features of this condition include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances and behavioral problems. Most people with SMS have a deletion of genetic material in each cell from a specific region of chromosome 17. Although this region contains multiple genes, the loss of one particular gene, RAI1, is responsible for most of the features of the condition, according to the Centers of Disease Control and Prevention.
Getting Neal to sleep was a challenge.
“He would only sleep for two hours, would wake up and be ready to go,” Jennifer recalls. We tried to give him bottles of milk to help him go back to sleep but that didn’t work. It was exhausting for us.”
Neal, who just turned 16, now sleeps better with medication and a little help from an i-Pad to get him to sleep. He loves Johnny Cash playing his guitar. He’s good at math and is very talkative.
“Our son is very outgoing, social and has an excellent long-term memory for names, places, events,” Jennifer says. “He has a great sense of humor, and loves playing Minecraft and fishing.”
“Having a child with special needs and disabilities has made me more aware of other people’s challenges in their life, especially people who also have children with disabilities,” Jennifer says. “As a caregiver, I’m able to better understand people’s needs. It also helps give me a different perspective.”
She encourages parents who have a child with disability to seek out support and use the resources available to them. She also urges parents to take time for themselves because they need time to recharge.
Jennifer joined ASRC Federal in March 2021 and appreciates she can work a flexible part-time schedule to ensure she can take care of Neal, who is attending high school in the afternoons.
“It helps to have the support of your work team who understands the challenges you are going through,” she says. “I try to get as much support as possible from other people, support groups and family.”
In her role, Jennifer handles questions with vehicle emissions standards and a wide variety of other inquiries the EPA receives daily.
“I really enjoy the diversity of my job and the different people I get to work with,” she says. “I’m able to bring together my skills as a researcher and customer service to help people find what they really need.”
Rick didn’t know he had an extremely rare disease until he was diagnosed with Inclusion Body Myositis (IBM), a progressive muscle disease, at 38. “My doctors couldn’t believe I was a varsity athlete in several sports in high school and college because I had IBM my whole life and it required extra time and effort to succeed.”
Rick is an engineering projects cost estimator for ASRC Federal. “In my 30s, it started being hard to even walk up an easy hill to go get a ball while I was golfing, and my balance was being impacted.”
After consulting with several specialists, Rick was diagnosed with IBM, which only impacts about 5,000 people in the United States, according to the Genetic and Rare Diseases (GARD) Information Center, a program of the National Institutes of Health that provides free access to reliable, easy to understand information about genetic and rare diseases. There is no cure for IBM, a rare form of muscular dystrophy, and treatment can only manage symptoms. Click here to learn more.
To manage his IBM, Rick works very closely with his specialists and other doctors to manage his health to slow the progression of the disease. Rick was also diagnosed with a rare form of the autoimmune disease of Lupus. Although the Mayo Clinic’s Sr. National Rheumatologist said they had never seen someone with these combinations, they were 100% certain of the diagnosis.
“Both of these conditions are very rare, so for someone to have both of these conditions is extremely rare,” Rick adds, who is a veteran of the U.S. Air force that includes combat support to the U.S. Army in the ROK (Republic of Korea). “I’m glad to still be able to walk, but I can’t do stairs or ladders anymore. I’m a positive person and I think that contributes to my health and long-term outlook. I look towards the possibilities instead of just what seems to be limitations.”
He also can’t sit in 90 percent of chairs, including wheelchairs, which is a challenge when at a hospital.
Rick joined ASRC Federal in August 2022 and has been so impressed with how accommodating and friendly everyone has been to him.
“I have challenges getting from the car to the office and sitting at a desk,” he says. “The company was so responsive and made immediate changes to assist me.”
To help Rick function better, his team relocated their estimating offices from the second to the first floor and installed door handles that he can open. He also has an elevated drafting chair to accommodate his needs and now has an electronic desk that adjusts so he can work sitting or standing promoting more effective productivity.
“They’ve really made accessibility a priority – immediately too,” Rick says. “It’s great to work for a company and with people who care and want to help.”
He encourages people with disabilities to be open and receptive with their colleagues and to not be afraid to ask for help. He also believes a positive attitude helps him cope with his disability. “Look to see how you can help others, even if you feel it seems little in comparison to how you really want to.”
“If you approach these things with a positive view, that also benefits you – your resolve and resiliency,” Rick says. “It also helps everyone as a whole.”
Rick enjoys his new role, as he is able to combine his technical skills and strategic thinking to help his team and customers to get a more comprehensive picture of the cost implications and processes for a project.”
Rick’s team helps with a wide variety of construction work from engineering and programming to project management.
“There is no playbook for many of these projects because they’re so specialized and often complex,” he says. “This is really interesting to see. Each day can be something different with new challenges and that’s what I enjoy.”
Rob and his wife Rhonda understand what it takes to support an adult son with autism. Rob’s stepson Myles has both physical and developmental disabilities, and Rob doesn’t hesitate to ask for help. He sees it as essential to ensure Myles receives the right care.
About 1 in 44 children has been identified with autism spectrum disorder (ASD) according to estimates from the Centers for Disease Control’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read Article]. ASD is a developmental disability that can cause significant social, communication and behavioral challenges.
“Myles requires support 24 hours a day. He can do a lot on his own, but needs someone by his side,” says Rob, who is vice president and chief solutions architect in the Capabilities and Technology Office. However, that pretty much came to a halt for Rob’s family and the millions of others who care for a family member with a disability when the pandemic hit. The couple also cares for aging mothers who need daily assistance, and though Myles will be moving to a place of his own with roommates soon, caring for the family is often a balancing act for them.
“Myles was in high school when Covid started. So, a lot of the transition services they provide for autistic young adults weren’t available,” Rob recalls. “The vast majority of his daily needs and support are provided by my wife and me to give him as fulfilling a life as possible.”
Although caring for an autistic son and two aging parents can be overwhelming at times, Rob is grateful for the support he gets from his colleagues and ASRC Federal.
“Having a flexible working environment allows me to provide the support needed to my family while meeting my work requirements and expectations,” he says.
Rob recognized early that he needed to be transparent with colleagues and manager about his caregiver responsibilities.
“It was important that I was open and honest about my role as a caregiver,” he says. “People will be understanding if you have to leave a meeting abruptly or something unexpectedly comes up.”
Rob adds it’s equally important to ask for help when you need it.
“Seek and ask for assistance. You are not alone. Asking for assistance gives people opportunities to assist and share knowledge,” Rob says. “If you haven’t reached out and talked to your boss and colleagues about your situation, do it.”
“Work can be a great support mechanism for caregivers, and I hope we will continue to find innovative ways to support one another as we navigate this evolving workplace environment,” he says.
Prevalence of Autism
The CDC is committed to continuing to provide essential data on ASD, for more information and resources to help families better understand and cope, please visit https://www.cdc.gov/ncbddd/autism/index.html.
Tara joined ASRC Federal as a technical writer for the Civilian & Health Operating Group in July 2021 working remotely from her home in Chesterton, Ind., where she provides technical editing and document submission for her government customers. Being Tara’s first time working remotely, she has needed to make some adjustments as she has congenital and progressive sensorineural hearing loss in both ears, which started at birth.
“Hearing loss is a difficult disability to explain to coworkers, especially in my case,” Tara explains. I am post-lingually impaired, so I learned to talk before I lost the bulk of my hearing. This distinction confuses people because they expect me to have associated speech difficulties.”
Living with hearing loss has taught Tara to carefully observe people and look for context clues. Virtual team meetings can be challenging for Tara because of the sound quality, and it can be difficult to read people’s lips. However, this hasn’t stopped her. She recommends Bluetooth connectivity for meetings and has used captions for training activities. When a coworker was on vacation, she stepped in to host virtual meetings via Teams.
“Doing these meetings takes a small amount of courage because I know I may misunderstand some of the speakers as the sound quality over Bluetooth often deteriorates with more attendees,” she says. “My team understands this and patiently helps me without making me feel inferior.”
Tara credits her team for her ability to take on new challenges.
“I have never had as much support at work as I do now at ASRC Federal,” she adds. “My entire team helps me accommodate my hearing loss whenever necessary.”
She adds that our company DE&I policies and resources give her the confidence to speak up when she needs support.
“In some ways, I might have better listening skills than others who may take speech for granted,” she says. “I feel this aligns well with technical writing because I am focused on learning the underlying requirements for documentation.”
Tara also adds that it’s important to understand that “disabilities” are labels, but there are many different manifestations within each category. Disability accommodation is not a “one size fits all” solution. She encourages people to take the time to understand a person’s disability and learn how they can support them in the workplace, as her team does so well.
ASRC Federals Strategic Partnership with AccessComputing
In line with our core values of Respect, Accountability and Stewardship, ASRC Federal’s Diversity, Equity & Inclusion Council will continue to provide focus around our DE&I priorities including recruiting, retaining and advancing employees with disabilities.
In step with our mission, ASRC Federal has partnered with AccessComputing to expand, diversify make our talent pool for recruiting more inclusive. This partnership with AccessComputing provides a pipeline to hire students and recent graduates in computing fields, along with access to subject matter experts in workplace disability advocacy and accessibility experts who will serve as a resource to help us build our framework for disability inclusion. AccessComputing also focuses on helping partners create accessible and diverse work environments to retain top talent.