There is no normal day for Nicole Attong.
Attong’s eldest daughter, Kelly, was born with a rare chromosomal disorder that left her intellectually disabled and visually impaired. Her journey with Kelly led Attong to FIU Embrace, a university-wide initiative that promotes health, wellness, and overall functioning for adults with developmental disabilities, such as autism, intellectual disability, cerebral palsy and down syndrome.
From the moment Kelly was born, Attong – the director of FIU Embrace – fought to get her into programs that offered medical, education and financial services. In some cases, Kelly was on waiting lists for years before gaining entrance to the programs.
Twenty-six years later, routine activities such as running errands or going on a vacation are still not so routine. For Kelly, loud noises are frightening and any deviation from a set structure she finds comfort in can be disorienting and upsetting, leading to uncomfortable moments in public places.
Attong says everything can be going fine, but “on any given day, anything around me that I can’t control for Kelly could happen, and in a split second that moment could change.”
Most hurtful are the strange looks and harsh comments that come from others.
“I have to swallow the pain and go out in public, because to go out in public means I have to take others’ criticism when they see my kid or their kid sees my kid and says, ‘There is a monster,’ because her eyes look different,” Attong says.
With advances in medicine and technology, individuals with developmental disabilities are living longer and Attong knows that one day she will not be around to take care of Kelly. When that day comes, she wants her daughter to be as independent as she can be.
“If you speak to a lot of parents who have children with developmental disabilities, they will tell you they want to die one day after they’ve buried their child, because then they don’t have to worry about who is going to take care of him or her,” Attong says. “I have to model for Kelly the right behavior, I have to teach her to use every moment to be an advocate for herself – to be independent. I have to teach her, every step of her life, how to embrace her disability.”
EMBRACING THE FUTURE
FIU Embrace aims to help individuals with developmental disabilities lead healthy lives and maximize their potential over the course of their lifetime. It’s a mission that immediately appealed to Attong, who worked as a therapist in the South Florida behavioral health and child welfare systems for several years and received her bachelor’s degree in psychology from FIU in 1996.
“I saw an opportunity where, through FIU, there could be an opportunity for various partners to come together to find solutions for problems Kelly has faced and will face after I die,” Attong says. “What I’m looking for are solutions and ways to build systems that will support and address problems that folks like Kelly face every day.”
Attong has been with FIU Embrace since 2015 and oversees the initiative’s programs and activities, which include providing a wide array of comprehensive medical, legal and inclusive postsecondary educational services, research projects and advocacy for national policy change based on data and insights gleaned from research.
In an effort to shed light on youth with developmental disabilities who have been excluded from the workforce, FIU Embrace is preparing to host a one-day employment conference to address the issue.
In March, the “Building a Diverse Workforce” conference will convene a group of employers who have been successful at maintaining longstanding employment of individuals affected by developmental disabilities.
The goal is to help employers look beyond the disability and tap into the ability and potential of individuals with developmental disabilities and to start a dialogue with employers on how to initiate and implement initiatives within their own organizations.
“We want to show employers that they have an untapped job market at their disposal,” Attong says. “There is no one-size-fits-all approach, we have to be intentional and thoughtful in our methods, but it can be done.”
The conference will shed some light on the key benefits of hiring individuals with developmental disabilities and dispel misunderstandings surrounding individuals with developmental disabilities.
“When matched to the right job, these individuals are less likely to take time off from work, can concentrate for long periods of time, enjoy repetitive tasks and can spot mistakes better than their typical colleagues,” Attong says. “They are also a lower risk for turnover.”
‘IT LOOKS GOOD’
Addressing these issues and bringing leaders from different sectors together to find solutions fuels this deeply personal mission for Attong to help Kelly, who is now 26, and others like her live productive and fulfilling lives.
In many ways, the work that is being done at FIU Embrace – from developing models of care for individuals with developmental disabilities and influencing public policy with research – is about giving herself and others in her position a feeling they have never experienced before and never thought would be possible.
“When I look at the work that FIU is doing through the FIU Embrace initiative, Kelly’s future, for the first time, looks good. I have hope.” Attong says. “This is the first time I feel as though Kelly doesn’t have to die before me.”
Attong acknowledges there is still much work to be done, but the progress being made is clear.