Program fosters change, embraces people with developmental disabilities

Dr. Yolangel Hernandez Suarez was not able to see her son for months after the pandemic began.  

A 28-year-old man who is on the autism spectrum, her son lives in a group home. Until recently, visits to the home had been restricted for the residents’ safety. Attempts at connecting via Zoom were unsuccessful as her son cannot communicate verbally and finds virtual meetings confusing. So, Hernandez Suarez waited.

Currently the vice provost for Health and Wellbeing at FIU, Hernandez Suarez knows full well the value of limited contact to stem the spread of infectious disease. But that doesn’t mean it was easy. “It crushes your spirit,” she says. “I’m a doctor, but I’m also a mom.”

Many people faced – and continue to face – similar circumstances. Whether families are physically separated from a loved one who is vulnerable to COVID-19 or whether a person has now become the 24/7 caretaker of a disabled or elderly family member at home, there’s a lot of hard work, worry – and love – going around.

“I don’t think any of us are coming out of this the same,” Hernandez Suarez says. “We need to take a moment and think about how we want things to be after the pandemic, how we are each a member of a community and how we rely on each other.”

The point is, Hernandez Suarez says, people with disabilities can contribute to society, but they need help overcoming challenges. FIU is leading real change and providing real solutions.

Providing holistic care

Years ago, the university recognized the need to better serve people with developmental disabilities, and it developed FIU Embrace. The program initially provided health care at FIU’s Faculty Health Group Practice. The model was developed by Hernandez Suarez (who helped create the program) and colleagues at FIU and the Herbert Wertheim College of Medicine. The service was designed for young adults with developmental disabilities who had aged out of the pediatric care system.

“Regular doctor’s offices are not very well prepared to care for people with severe communication issues,” Hernandez Suarez says. She instituted a “one-stop shop” where patients could receive medical, psychological, psychiatric and gynecological care in the same place by a team of professionals trained to assist them. Hernandez Suarez knew that achieving wellness meant more than health care. She began to explore ways to expand the program and brought Nicole Attong aboard as the program’s director.

Today, FIU Embrace has blossomed into a university-wide initiative that promotes health, wellness and overall functioning for adults with developmental disabilities, such as autism spectrum disorder, intellectual disabilities and other neurodevelopmental disorders. The program’s mission is to help these folks lead healthy lives and maximize their potential.

What sets it apart: Its 360-degree approach. “Health and well-being are beyond medical health,” says Attong, who has been at the helm of FIU Embrace since 2015. “To be happy we need a job, a place to live, friends, all these things. FIU Embrace’s resources are geared toward that.”

FIU Embrace looked far and wide for both inspiration and real-world successes in developing its program. FIU has partnered, for example, with a nonprofit in Israel that provides holistic care to people with developmental disabilities, a reflection of that country’s approach.

Research

FIU Embrace is not just applying research – it’s creating research. “We are developing models of care that have been tested and evaluated by faculty on campus,” Attong explains. “These models are incubated on campus and transposed into the community.”

Case in point: FIU Embrace partnered with Citrus Health Network in Miami to house the program’s health care facility at a location on 107^th Avenue, across the street from FIU. Citrus Health professionals implement FIU Embrace’s model of health care daily.

FIU Embrace – part of the Office of Research and Economic Development – works with faculty from across the university, including the Robert Stempel School of Public Health & Social Work and the College of Arts, Sciences & Education, to evaluate existing models of care with a goal of moving them toward evidence-based practices.

The program has also developed a strong partnership with the College of Law. FIU Embrace connects people who have developmental disabilities and their families with faculty and law students at FIU’s Community Lawyering Clinic. The legal team provides services to these folks on a wide range of matters, including family law, immigration, guardianships, powers of attorney and more.

“Our clients come in with a diversity of needs,” says Michelle Mason, senior associate dean for experiential learning at the College of Law and the director of FIU Law’s Embrace partnership. “Part of it is making sure that families feel like they are supported and guided, and that their children will be taken care of even after they are gone.”

While helping out, future lawyers receive valuable training. “The law students are on the frontlines, closely supervised by an attorney,” Mason says. This is creating a generation of FIU lawyers equipped to help the developmentally disabled community.

Community

Educating community members and families is key. One workshop, for example, educates law enforcement and first responders.

Adults with developmental disabilities often fall prey to police violence; unnecessary arrests; or being Baker Acted (sent to mental health institutions involuntarily). Such fears are very real, adds Hernandez Suarez. “If your kid has a meltdown in Target and the ambulance picks him up and Baker Acts him, we don’t want your kid to end up in jail. This is the reality of this population.”

 “Every year we train at least two sets of police officers on how to interact with folks impacted by autism,” Attong says. “The officers can go back to their unit and train people. It’s about building capacity and getting to a tipping point where the community knows how to interact.”

To continue building a community that will better serve those with developmental disabilities, Hernandez Suarez and her husband Dr. Jeffrey Simmons gave a $2 million gift to FIU to establish the Simmons+Hernandez Suarez Fellowship Program, which will support professionals who take an interdisciplinary approach to solving issues facing developmentally disabled adults.

“Our decision to give a planned gift to train the future leaders of this community was because we see that there are not enough doctors, nurses, civil servants, lawyers, or social workers that have a deep understanding of the [developmentally disabled] community,” says Hernandez Suarez. “If they walk out of here with a better understanding of what this is, little by little they are going to change the fabric of this community.”

Education and jobs

At the core of FIU Embrace is a three-year program in which students take classes, earn micro credentials and prepare themselves for employment and independent living. Students engage with tutors, mentors and a life skills curriculum to learn about budgeting; time management; cooking; healthy habits and more. The program is currently serving 24 students and plans to admit students for the next cohort in the spring of 2021. 

The students take regular FIU classes. “We don’t see their disability,” Attong explains. “We see who they are as people and what they bring to the table. They are leaving here with gusto and enthusiasm because they believe they have a lot to offer.”

Parents often worry about what will happen to their child after they’ve died. While not every single worry can be silenced, Donna Galloway says FIU Embrace has given her peace of mind. “I’m not even worried about when [my grandson] goes to get employment,” says Galloway, whose grandson is studying at FIU and participating in FIU Embrace. “The program is phenomenal. My grandson is growing, he’s become independent, he advocates more for himself. I just know that he’s going to be okay.”

FIU Embrace connects students with employers like Baptist Health South Florida to help them find internships or jobs in areas that match with each student’s interests and strengths, including office work, kitchen assistance and transportation of equipment.

Robin Tellez, a director of human resources at Baptist Health South Florida, says she’s proud her organization hires folks with developmental disabilities. “I call it the hidden talent pool,” she says. “This is a population of individuals that are able to do a job. They love the idea that they are coming to work every day, and it shows. It’s a fresh sprit. It changes the culture of the full department for the better.”

“Nicole’s desire for excellence in this program is really showing through her students and through the supports she has provided for employers,” she adds.

Leading change

For Attong, the program is personal. Like Hernandez Suarez, Attong is mother to an adult child with an intellectual disability. Her daughter, Kelly, spends her days at home unable to find a job. She cannot participate in programs that other young adults who are moderately impacted can access because of her age.

“What drives me, is that this is what is happening to me and Kelly,” Attong says. “For me, every minute counts. If there is one more student who gets a job somewhere and comes back and tells me, ‘I’m happy, life is good,’ it makes me want to continue this work. It’s one more person not living in the shadows, depressed and anxious about their life.”

The ultimate goal? To strengthen the community.

“Through FIU Embrace, students and faculty are becoming more compassionate and open to a segment of the population that have a disability,” Attong says. “They are learning how to work alongside these individuals. Think about five years from now, when our graduates are penetrating into industries, and they are not going to look at my students differently. Then, we will have achieved something far greater than educating a person.”