The mission of JFK Partners is to lead the way in evidence-based interdisciplinary clinical care, education, research, and community partnerships to enrich the lives of children, youth, and adults with Intellectual/Developmental Disabilities and special health care needs. Our vision is to promote the individuality, inclusion, active community engagement, and health and well- being of all people of diverse backgrounds with Intellectual/Developmental Disabilities and their families. Research efforts at JFK Partners are centered around description, diagnosis, evaluation and treatment of developmental disabilities.
The purpose of this study is to investigate the needs of families with youth with intellectual and developmental disabilities (IDD) related to social isolation during the COVID-19 pandemic. Specifically, we aim to examine whether some families will report unmet needs around mental health, financial, intervention services, community supports and school resources. We will also investigate whether some families will report barriers to accessing supports, services and resources for their family and child with IDD. Finally, we will examine whether some families will provide insight into what is needed to increase access to supports, services and resources to minimize negative consequences of social isolation.
Component A: Enhanced Epidemiologic Research Using Existing SEED Data and Follow-up Surveys of Existing SEED Participants
The purpose of this study is to conduct analyses of existing SEED data and follow-up surveys of participants from SEED Phases 1, 2, and 3 to:
- Address current research gaps, and publish findings related to risk factors for ASD and the characteristics and needs of children with ASD; and
- Support the implementation of follow-up surveys in collaboration with CDC from an existing list of SEED participants in SEED 1-3. Families will be contacted to answer questions about genetic, prenatal, early-life and family factors that contribute to autism spectrum disorder (ASD). The study will also look at differences and similarities in the behaviors, abilities, and health of young children with ASD. It will also provide insights into the experiences of adolescents with ASD as they mature through adolescence and into adulthood.
Component B: In-Person Assessment of Intellectual Abilities of SEED Participants
The purpose of this study is to gain knowledge about the functioning of individuals with ASD through follow-up assessments of SEED 1-2 participants. This study will evaluate the reliability of childhood measures of intellectual status by comparing SEED participants’ current functioning (aged 8 to 22) with their abilities when they were preschoolers. These data will be used to examine factors that affect the stability of intellectual status, and its ability to predict transition outcomes.
This study will compare each approach on a variety of measures and learn about the strengths and weaknesses of each approach so that school administrators, providers and families can make informed decisions about program selection.
This research study will investigate a Cognitive Behavior Therapy (CBT) group treatment to determine if it is more effective than therapy services that adolescents with ASD and intellectual Disability (ID) are already receiving at school, in the community, or from their doctor. This CBT intervention has been adapted for the learning and language needs of teens with Autism and ID.
Provides support to PCPs to identify and manage children with ASD in underserved regions of the state, particularly rural and frontier areas.
The purpose of the study is to evaluate the feasibility and initial efficacy of the Birds and Bees Program, a parent-mediated sexual and reproductive health program for youth with ASD.
Qualitative methods will be used to evaluate priorities, expectations, and needs for adult models of neurodevelopmental specialty care. Interviews will continue until thematic saturation is reached. We will also perform chart review of approximately 60 patients seen in the Adult DD Clinic. We will characterize demographics, diagnoses, and social determinants of health; we will use the Frailty Index, an age-agnostic measure, to describe medical complexity.