By Jill Pease
In her research, Jessica Kramer, Ph.D., OTR/L, is guided by a mantra from the disability advocacy community: “Nothing about us without us.”
“I need to make sure the tools, assessments and interventions we develop are relevant to the values and the needs of young adults with disabilities and the best way to do that is to partner with them from the ground up as we’re working, thinking and developing these materials,” said Kramer, an associate professor in the department of occupational therapy.
Through her partnership with young adults with disabilities, Kramer has created an assessment tool that helps them identify their own therapy goals as they enter adulthood. The PEDI-PRO is based on an existing assessment tool — the Pediatric Evaluation of Disability Inventory- Computer Adaptive Test, or PEDI-CAT — that is completed by parents or rehabilitation professionals. Used in parallel to the PEDI-CAT, the PEDI-PRO will give young adults a voice when planning for their future or evaluating their therapy outcomes.
“The young adults with disabilities who will complete the PEDI-PRO are in that stage where they’re preparing to say ‘What do I want from my life as an adult?’ ‘What’s important to me, what are my goals and aspirations, whether that is for work or being a community member or living on my own or not,’” said Kramer, who received her bachelor’s degree in occupational therapy from UF in 1999 before going on to earn graduate degrees from the University of Illinois at Chicago.
Kramer and her team have recently received a $1.3 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development as part of the federal Small Business Technology Transfer program. The funding allows the team to conduct a large-scale evaluation of the PEDI-PRO with the goal of bringing the tool to market. Kramer’s co-principal investigator is Dan Davies of AbleLink Smart Living Technologies, the company that designed a user interface optimized for users with cognitive disabilities.
PEDI-PRO users evaluate themselves by selecting meaningful everyday life situations, such as working at a job, going to a restaurant or getting ready in the morning. Within each of these situations, they evaluate their mobility, daily activity skills, and social and cognitive skills.
“If there are areas where young adults report they have strengths or areas where they report they are having difficulty, then the occupational therapist, physical therapist or speech-language therapist, in partnership with parents or caregivers, can collaborate with the young adult to make sure that therapy is addressing those areas in order for the young adult to be prepared and successful to do the things that they want to do or hope to do in adulthood,” Kramer said.
Developing the PEDI-PRO has involved several years of working with community stakeholders, including focus groups with young adults, therapists and other professionals to determine what everyday life situations and functional skills should be included on the assessment. The team also conducted extensive cognitive interview testing to make sure the questions on the PEDI-PRO are easy to understand by users with a range of learning needs.
Kramer’s team of young adult research partners have been critical to the tool’s creation, from providing feedback on how questions are phrased to picking the best pictures to illustrate concepts. The young adult team is currently helping to select the final items that will be included in PEDI-PRO for the large-scale validation. They are also collaborating on another project led by Kramer that is designed to prepare people with intellectual disabilities to engage in research during public health emergencies. The young adult team members are working to ensure that the video and text instructions in the project’s toolkit are easily understood by people with intellectual disabilities.
“Whether it’s designing a new assessment, conducting research or delivering an intervention, we are always thinking about how we might support a young adult with a disability to propel themselves into adulthood and the adulthood they want,” Kramer said.