Project Description:
Approximately one in 68 children (1.5 percent) in the United States has been identified with autism spectrum disorder (ASD). In addition, approximately 13.8% of children under the age of 18 in the United States (US) have been diagnosed with a DD (http://www.cdc.gov/ncbddd/dd/ddsurv.htm). In recent years, this percentage has been growing, especially for some specific conditions, such as ASDs. Access to adequate health care is a
significant problem for children and youth with special health care needs (CSHCN), but is even more pronounced for those with ASDs. This is due to a variety of factors including a lack of
trained providers for children/youth with neurodevelopmental and other related disabilities (DDs) and their families. Further, significant racial and ethnic disparities exist in the recognition
and diagnosis of ASD, and access to treatment and intervention for DD and ASD, particularly in underserved populations such as those in the Bronx and New York City. This concern is exacerbated by a lack of sufficient numbers of providers for children with ASD and DD who are trained in systems thinking and exposed to ID practices.
The needs of children with ASDs and DDs and their families are particularly acute in the Bronx. With more than 30% of its residents living at or below the poverty level, the Bronx, NY is the poorest urban county in the US. Demographically, the vast majority of residents of our borough are members of underrepresented groups (URGs). According to the 2014 American Community Survey, 58% of the population is Latino and 30% is African-American. While these needs represent a significant public health challenge, they also depict the future demographics of the
United States. As a result, investments in workforce preparation in New York, and the Bronx in particular, offer a unique opportunity to train the next generation of health care leaders who will meet the needs of children and youth with ASD and DD in the future.
Goals of the RFK LEND Program
The Rose F. Kennedy Leadership Education in Neurodevelopmental and Other Related Disabilities (RFK LEND) will:
Train students and professionals from the greater NYC metropolitan area to address the complex needs of persons with ASD and DD in an interdisciplinary manner;
Increase the number of trained providers in the greater NYC metropolitan area available to diagnose and treat those with complex neurodevelopmental and other related disabilities, including autism; and
Enhance the clinical expertise and leadership skills of practicing professionals and families in the greater NYC metropolitan area dedicated to caring for children with DDs,
including autism.
Specific objectives of Rose F. Kennedy LEND program
The RFK LEND will:
1) Provide high-quality interdisciplinary graduate-level education to 60 long-term trainees that emphasizes the integration of services supported by state, local agencies, organizations, private providers, and communities; Einstein RFK LEND, Bronx, NY MCHB-LEND COMPETING RENEWAL [5T73MC00027]
2) Train 60 medium-term and 1000 short-term trainees, including practicing professionals and families, to increase knowledge and skills around ASD and DD;
3) Engage current university faculty from 15 core disciplines, including family members, to encourage interdisciplinary training and mentor trainees;
4) Provide direct services to 7,000 individuals per year including more than 1500 children and youth with ASD utilizing interdisciplinary diagnostic evaluations provided by RFK
LEND faculty and trainees;
5) Ensure that the RFK LEND program is engaged in the national network of LEND programs in order to foster collaboration, coordinate program efforts, disseminate research to the field, and provide peer mentorship opportunities;
6) Increase the number of trainees from underrepresented racial and ethnic groups; and
7) Increase the number of individuals with disabilities and family members in the program as trainees, faculty, and program consultants whenever appropriate and feasible.
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Urban
