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 .
Every October,聽聽(NDEAM) offers us an opportunity to celebrate the many contributions of people with disabilities to America鈥檚 workplaces and economy.聽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 鈥淒isability:聽Part of the Equity Equation鈥 encourages organizations of all sizes and industries across the country to support this important mission by fostering a more inclusive workforce.
Meet Jennifer
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.
鈥淣eal 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,鈥 says Jennifer, who is a reference librarian and public inquiries coordinator working on the contract for the Environmental Protection Agency鈥檚 Office of Transportation and Air Quality.
鈥淗e would drink milk and get milk into his lungs,鈥 she recalls. 鈥淚t caused a lot of complications and he had constant ear infections.鈥
Then at two years old Neal began having seizures, which required him to be hospitalized and to have additional testing.
Neal was diagnosed with , 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.
鈥淗e would only sleep for two hours, would wake up and be ready to go,鈥 Jennifer recalls. We tried to give him bottles of milk to help him go back to sleep but that didn鈥檛 work. It was exhausting for us.鈥
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鈥檚 good at math and is very talkative.
鈥淥ur son is very outgoing, social and has an excellent long-term memory for names, places, events,鈥 Jennifer says. 鈥淗e has a great sense of humor, and loves playing Minecraft and fishing.鈥
鈥淗aving a child with special needs and disabilities has made me more aware of other people鈥檚 challenges in their life, especially people who also have children with disabilities,鈥 Jennifer says. 鈥淎s a caregiver, I鈥檓 able to better understand people鈥檚 needs. It also helps give me a different perspective.鈥
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 91快活林 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.
鈥淚t helps to have the support of your work team who understands the challenges you are going through,鈥 she says. 鈥淚 try to get as much support as possible from other people, support groups and family.鈥
In her role, Jennifer handles questions with vehicle emissions standards and a wide variety of other inquiries the EPA receives daily.
鈥淚 really enjoy the diversity of my job and the different people I get to work with,鈥 she says. 鈥淚鈥檓 able to bring together my skills as a researcher and customer service to help people find what they really need.鈥
Meet Rick
Rick didn鈥檛 know he had an extremely rare disease until he was diagnosed with Inclusion Body Myositis (IBM), a progressive muscle disease, at 38. 鈥淢y doctors couldn鈥檛 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.鈥
Rick is an engineering projects cost estimator for 91快活林 Federal. 鈥淚n 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.鈥
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 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鈥檚 Sr. National Rheumatologist said they had never seen someone with these combinations, they were 100% certain of the diagnosis.
鈥淏oth of these conditions are very rare, so for someone to have both of these conditions is extremely rare,鈥 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). 鈥淚鈥檓 glad to still be able to walk, but I can鈥檛 do stairs or ladders anymore. I鈥檓 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.鈥
He also can鈥檛 sit in 90 percent of chairs, including wheelchairs, which is a challenge when at a hospital.
Rick joined 91快活林 Federal in August 2022 and has been so impressed with how accommodating and friendly everyone has been to him.
鈥淚 have challenges getting from the car to the office and sitting at a desk,鈥 he says. 鈥淭he company was so responsive and made immediate changes to assist me.鈥
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.
鈥淭hey鈥檝e really made accessibility a priority 鈥 immediately too,鈥 Rick says. 鈥淚t鈥檚 great to work for a company and with people who care and want to help.鈥
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. 鈥淟ook to see how you can help others, even if you feel it seems little in comparison to how you really want to.鈥
鈥淚f you approach these things with a positive view, that also benefits you 鈥 your resolve and resiliency,鈥 Rick says. 鈥淚t also helps everyone as a whole.鈥
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.鈥
Rick鈥檚 team helps with a wide variety of construction work from engineering and programming to project management.
鈥淭here is no playbook for many of these projects because they鈥檙e so specialized and often complex,鈥 he says. 鈥淭his is really interesting to see. Each day can be something different with new challenges and that鈥檚 what I enjoy.鈥
Meet Rob
Rob and his wife Rhonda understand what it takes to support an adult son with autism. Rob鈥檚 stepson Myles has both physical and developmental disabilities, and Rob doesn鈥檛 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鈥檚 (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network. []. ASD is a developmental disability that can cause significant social, communication and behavioral challenges.
鈥淢yles requires support 24 hours a day. He can do a lot on his own, but needs someone by his side,鈥 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鈥檚 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.
鈥淢yles was in high school when Covid started. So, a lot of the transition services they provide for autistic young adults weren鈥檛 available,鈥 Rob recalls. 鈥淭he vast majority of his daily needs and support are provided by my wife and me to give him as fulfilling a life as possible.鈥
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 91快活林 Federal.
鈥淗aving a flexible working environment allows me to provide the support needed to my family while meeting my work requirements and expectations,鈥 he says.
Rob recognized early that he needed to be transparent with colleagues and manager about his caregiver responsibilities.
鈥淚t was important that I was open and honest about my role as a caregiver,鈥 he says. 鈥淧eople will be understanding if you have to leave a meeting abruptly or something unexpectedly comes up.鈥
Rob adds it鈥檚 equally important to ask for help when you need it.
鈥淪eek and ask for assistance. You are not alone. Asking for assistance gives people opportunities to assist and share knowledge,鈥 Rob says. 鈥淚f you haven鈥檛 reached out and talked to your boss and colleagues about your situation, do it.鈥
鈥淲ork 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,鈥 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 .
Meet Tara
Tara joined 91快活林 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鈥檚 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.
鈥淗earing loss is a difficult disability to explain to coworkers, especially in my case,鈥 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.鈥
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鈥檚 lips. However, this hasn鈥檛 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.
鈥淒oing 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,鈥 she says. 鈥淢y team understands this and patiently helps me without making me feel inferior.鈥
Tara credits her team for her ability to take on new challenges.
鈥淚 have never had as much support at work as I do now at 91快活林 Federal,鈥 she adds. 鈥淢y entire team helps me accommodate my hearing loss whenever necessary.鈥
She adds that our company resources give her the confidence to speak up when she needs support.
鈥淚n some ways, I might have better listening skills than others who may take speech for granted,鈥 she says. 鈥淚 feel this aligns well with technical writing because I am focused on learning the underlying requirements for documentation.鈥
Tara also adds that it鈥檚 important to understand that 鈥渄isabilities鈥 are labels, but there are many different manifestations within each category. Disability accommodation is not a 鈥渙ne size fits all鈥 solution. She encourages people to take the time to understand a person鈥檚 disability and learn how they can support them in the workplace, as her team does so well.
