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FCIC: A Hidden Gem at USF Provides Much Support to People with Developmental Disabilities and Their Families

30 years ago, President George H.W. Bush lifted his pen to sign the Americans with Disabilities Act while expressing, “Let the shameful wall of exclusion finally come tumbling down.” Since then, much progress has been made to prohibit discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, health, and all public and private places that are open to the general public. Established in 2005, the Florida Center for Inclusive Communities (FCIC)/University Center for Excellence in Developmental Disabilities (UCEDD) within the University of South Florida (USF) College of Behavioral & Community Sciences is the only center on disabilities at USF.

During fiscal year 2019, FCIC distributed information and resources to over 398,586 individuals with developmental disabilities (DD), their family members and professionals. Their annual report card (see right image) provides a snapshot of all their other activities, and reveals how far the FCIC impact reaches across Florida and beyond. Funded by the Administration on Intellectual and Developmental Disabilities, FCIC received a competitive renewal for another five years in July 2020. The total value of the project across five years is $2,858,660.  The proud FCIC Co-Directors at USF Department of Children and Family Studies are Dr. Lise Fox and Dr. Don Kincaid and Associate Director is Dr. Elizabeth Perkins. This core grant helps to leverage additional grants and contracts, averaging between $12-15 million additional dollars per year.

67 UCEDDs are funded under the federal Developmental Assistance and Bill of Rights Act of 2000 – the “DD Act” – ­all working to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. The UCEDDs provide technical assistance, community education, and direct services in addition to research, and information dissemination.

FCIC currently has 23 diverse programs offering a range of supports and services that include: early intervention to promote social emotional learning; educational supports to schools implementing positive behavior support programs; preparing people with developmental disabilities for employment; assisting businesses to support increased hiring of people with disabilities; training future health care providers about health issues of people with developmental disabilities; and the promotion of inclusion in the community. These major centers and projects that not only serve the local area, and Florida, but provide expertise to other states across the nation and internationally.

In addition, FCIC’s academic programs include a focus area in the online Master of Science Degree in Child and Adolescent Behavioral Health and a developmental graduate certificate in Positive Behavior Support.

“I feel like FCIC is a hidden gem – many don't realize the comprehensiveness and depth of our work across multiple areas such as early childhood, education, behavior, employment, and health. We have many high-profile projects in the center,” said FCIC Associate Director Elizabeth Perkins.

Since March of this year, FCIC programs have provided supports and services using a virtual model in response to the COVID-19 Pandemic. The National Center for Pyramid Model Innovations (NCPMI) pivoted quickly to a focus on developing products and resources that were needed by early educators and families to respond to COVID. While many organizations disseminated COVID related resources for individuals with developmental disabilities, NCPMI was the only national center solely focused on addressing the social and emotional needs of young children with DD and their families.

“The Center supports states, programs, personnel and families implement effective social, emotional and behavioral interventions for young children,” said Dr. Lise Fox, PI of the NCPMI. “As we consider the reopening of programs, school and program leaders have to make a host of difficult decisions as they create plans to meet the needs of children and families. We hope our resources will be useful tools.”

A significant amount of FCIC funding is dedicated to work related to bringing Positive Behavior Support (PBS) to schools and programs to support students and promote inclusivity. Drs. Don Kincaid and Heather George provide the leadership of several PBS focused projects. They were recently involved in the redesign of PBIS training to be more culturally responsive and trauma informed, and to be delivered via remote, virtual training platforms in response to distance learning requirements posed by COVID-19.

This year, FCIC performed 1897 hours of interdisciplinary preservice training to 384 participants, 2,095 hours of community training to 31,472 participants, 10,211 hours of technical assistance to 9256 people, delivered over 49,457 hours of direct services to 2580 people, engaged in 8,417 hours of research activity, as well as developed 271 new products, and continued dissemination of 117 products developed in previous years.

“Our numbers speak for themselves. I am so incredibly proud to be a part of FCIC’s amazing team of 115 faculty and staff,” added Perkins.

In 2009, Perkins completed her PhD in Aging Studies and also began working at FCIC.

“When I came to the United States in 1998, I noticed immediately the difference the ADA made in terms of accessibility for buildings compared with the UK. As a person with a disability, I also liked the use of “person-first” preference for language – i.e. people with disabilities, rather than “the disabled” or a “disabled person”. In the UK I trained as a Registered Nurse in Learning Disabilities, the UK equivalent on intellectual/developmental disabilities, and I also have a nephew with autism, so know the challenges that families have when there is a child with a developmental disability.”

Moreover, one of FCIC’s advocacy campaigns highlights the issue of the large waitlist for the iBudget Home and Community Based Medicaid Waiver for People with DD in Florida. Over 22,000 people with DD are waiting for services to enhance their quality of life and assist their family caregivers.

“Unfortunately, some people are waiting years on the waitlist, and given Florida’s aging population, it is only going to get significantly worse if this issue isn’t aggressively tackled in the near future,” added Perkins.

People with DD often have difficulty accessing appropriate high-quality healthcare oftentimes because health care providers lack training or familiarity with the supports people with DD need. FCIC is addressing this issue by undertaking activities and developing health resources that educate providers to be sensitive to the unique health needs of people with disabilities, and assist individuals and their caregivers to be proactive about knowing and communicating their own health needs across their lifespan. During 2019-2020, FCIC continued its longstanding collaboration with USF Morsani College of Medicine, delivering disability and health lectures to all first year Medical Students.

“It is our mission that all individuals with developmental disabilities will have the freedom, responsibility, authority, and support to live self-determined lives, and I am proud of all the work that our faculty and staff in FCIC do to fulfill that mission,” said Lise Fox.

For more information, visit the FCIC Video Overview and the FCIC website.