Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs provide long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. The purpose of the LEND training program is to improve the health of infants, children, and adolescents with disabilities. They accomplish this by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by ensuring high levels of interdisciplinary clinical competence.
LEND programs operate within a university system, usually as part of a University Center for Excellence (UCEDD) or other larger entity, and collaborate with local university hospitals and/or health care centers. This set-up gives them the expert faculty, facilities, and other resources necessary to provide exceptional interdisciplinary training and services.
There are 52 LEND programs located in 44 US states, with an additional six states and three territories reached through program partnerships. Collectively, they form a national network that shares information and resources and maximizes their impact. They work together to address national issues of importance to children with special health care needs and their families, exchange best practices and develop shared products. They also come together regionally to address specific issues and concerns.
While each LEND program is unique, with its own focus and expertise, they all provide interdisciplinary training, have faculty and trainees in a wide range of disciplines, and include parents or family members as paid program participants. They also share the following objectives:
- Advance the knowledge and skills of all child health professionals to improve health care delivery systems for children with developmental disabilities.
- Provide high-quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers, and communities.
- Provide health professionals with skills that foster community-based partnerships.
- Promote innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships.
The LENDs grew from the 1950s efforts of the Children’s Bureau (now the Maternal and Child Health Bureau) to identify children with disabilities as a Title V program priority. They are funded under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, and are administered by the Health Resources and Service’s Administration’s (HRSA) Maternal and Child Health Bureau (MCHB).
Project Title: JFK Partners Colorado LEND Program
Applicant Name: Sandra L. Friedman, MD, MPH
Address: JFK Partners, Univ. of Colorado Denver, 13121 E. 17th Ave., C234, Aurora, CO 80045
Contact Phone Numbers: Voice- 720-777-6636; Fax- 303-724-7664
Web Site: http://www.jfkpartners.org/
PROBLEM: Children who are deaf or hard of hearing (DHH) with co-morbidities including autism and neurodevelopmental disabilities (ASD/DD) and their families need culturally and linguistically competent pediatric audiology leaders with skills in inter-professional collaboration to address health disparities and to design & deliver effective, family-centered interventions in coordinated systems of care.
GOAL AND OBJECTIVES: JFK Partners LEND in conjunction with the Marion Downs Center will prepare trainees and fellows (T/Fs) from audiology programs in leadership and specialized clinical skills to improve the health and wellbeing of children who are DHH with/at risk for ASD/DD and their families, each of 5 years (2016-21) through objectives: A) Train 16 diverse long-term (L) T/Fs in and at least 10 medium- & 20 short-term (M/STs) in a comprehensive curriculum in leadership, disability concepts, and clinical preparation; and B) Conduct 5 active research investigations to understand and treat children who are DHH with ASD/DD and special needs. C) Train 100 practicing pediatric audiologists and other related professionals about children who are DHH with ASD/DD.
METHODOLOGY: 16 long term AUD students will have more than 300 contact hours in pediatric audiology which will include specialty in children with ASD/DD. They will take core leadership & ASD/DD didactic courses, clinical and other practica and complete research assignments over the year. 10 medium/20 short term trainees will be provided with ASD/DD didactic &/or practicum exposure (40-150 hours). All trainees will be invited to participate in the Frontiers in Hearing conference held every two years with specialized training in ASD/DD. On alternating years, a community workshop/seminar will provide education and resources to trainees and community based professionals. In addition, trainees will participate in grand rounds, multidisciplinary clinic, lectures, parent training sessions, clinic quality improvement projects, and telehealth. Research activities will focus primarily on children who are DHH with ASD/DD and children in Spanish-speaking homes.
COORDINATION: Collaborative relationships specific to children with hearing loss and ASD/DD include: Hands & Voices, Boston Children’s Hospital, Cincinnati Children’s Hospital, the National Center for Hearing Assessment and Management (NCHAM), the Colorado Home Intervention Program, the Children’s Hospital Colorado, University of Colorado Hospital, the Marion Downs Center, and the Colorado School for the Deaf and Blind and the National Early Childhood Assessment Project (NECAP): deaf and hard of hearing.
EVALUATION: The JFK Partners uses a two-part evaluation protocol: Part 1 is an accountability-centric administrative data collection system to address common elements across LEND programs (Performance Measures (PMs) and Program Data, reported in the HRSA Electronic Handbook; Part 2 is the measurable assessment of program-specific objectives. All audiology trainees participate in these processes.
Laurel Thorburn, Christine LeRoy, Taylor Stevenson, Zoe Boxer, Kaylee Watson, Mari Peterman
Kaylee Watson, Mari Peterman
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