​  Pediatrics

Neurodevelopmental disabilities

Supporting children and families

By Andy Barnes, MD, MPH, FAAP, and Beth Fondell

eurodevelopmental disabilities (NDDs) are a group of disorders that are often first detected and diagnosed in childhood. Associated primarily with the functioning of the neurological system and brain, they may affect the steady development of emotions, motor skills, learning abilities, self-control, and memory. Three or more of these factors in a young child typically characterize diagnosis of an NDD.

The most commonly recognized of these disorders are autism spectrum disorder, Down syndrome, attention deficit and hyperactivity disorder, and cerebral palsy. At this time, all NDDs present life-long challenges, often addressed with the help of health care professionals in multiple fields. While some NDDs may change or evolve as a child grows older, others are permanent.All NDDs present life-long challenges.

Serving patients with neurodevelopmental disabilities

Leadership Education in Neurodevelopmental and Related Disabilities (MN LEND) is an interdisciplinary training program that launched on the Twin Cities campus of the University of Minnesota in 2009. With federal funding provided by the Maternal Child Health Bureau through the Autism Collaboration and the Accountability, Research, Education, and Support Act (Autism Cares Act), the program was established with the University’s Institute on Community Integration to develop the next generation of leaders and practitioners within health and social science-related fields who have specialized knowledge and experience in the long-term support of children and youth with NDDs to live healthy, meaningful, and inclusive lives with their families and communities.

Individuals with an NDD and the practitioners who engage with them have the opportunity for challenging and rewarding interactions with one another from infancy into adulthood, as well as with the family members who provide day-to-day support. Ensuring the availability and competence of both practitioners and caregivers to meet the present and future health, education, and quality of life needs for these individuals is the primary charge of the 50+ similar LEND programs based within University settings across the United States.

A cohort of future LEND fellows in Minnesota is selected annually, representing the fields of medicine, nursing, dentistry, occupational and physical therapy, speech pathology, behavior therapy and special education, social work, public health, public policy and law, neuropsychology, and genetics. LEND fellows come from all walks of life: graduate students, post-doctoral trainees, and professionals based within academic departments or research centers. Many other fellows are self-advocates, family advocates, or community-based professionals.

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This interdisciplinary cohort is essential to ensure that a collaborative understanding of the lifelong implications for a person living with an NDD diagnosis emerges. Contributing to this outcome are:

• A shared commitment to convene weekly for didactic seminars centered on the long-term supports and services children with NDDs need to live healthy lives with their families. Specific focus is placed upon understanding the relevance of the federal Medicaid program, special education services, comprehensively coordinated care planning, and familiarity with evidence-based practices that exist across disciplines.
• Individualized clinical and/or community experiences designed for future practitioners to effectively support families and individuals with navigating systems of reimbursable services and utilizing resources that can positively impact the child’s development, functional capacity, and quality of life.
• Accessibility to organizational partnerships that focus efforts on academic research, non-profit advocacy, educational curricula, and healthy lifestyle. These partnerships provide opportunities for fellows to receive extensive mentoring, observation of interventions, and development of leadership skills. MN LEND maintains connections and ongoing partnerships with Gillette Lifetime Specialty Healthcare, The Arc Minnesota, Institute on Community Integration, University of Minnesota Autism Spectrum and Neurodevelopmental Disorders Clinic, Family Voices of Minnesota, and the Minneapolis Public Schools’ Department of Early Childhood Screening.

Collectively the LEND programs in the United States provided interdisciplinary diagnostic evaluations for more than 109,000 infants and children in 2016-2017. By continuing to meet the growing demand for these services, LEND programs are reducing wait times for diagnostic evaluation and entry into early intervention services and lifespan transition support. LEND fellows have also been instrumental in the creation of welcoming environments for comprehensive clinical evaluations and interventions that yield effective results. These efforts are being recognized and integrated as best practices across multiple settings.

Challenges of autism spectrum disorder

Of particular importance is the reality of the public health challenge that autism spectrum disorders (ASD) pose as the prevalence of this neurodevelopmental disability diagnosis continues to rise. With one in 68 children now being affected by ASD, addressing the shortage of well-trained medical and allied health professionals, educators, and therapists requires continual focus. LEND programs are uniquely designed to address the multi-faceted collaboration necessary to tackle this national challenge. Growing partnerships with MN LEND continually adds breadth and depth both to our state’s health care workforce, and to the array of services and supports available in our state and beyond.

Training for all health care professionals

Complex medical needs and developmental concerns present a challenge to both practicing pediatricians and to the next generation of pediatricians. In addition to clinical best practices, health care professionals may struggle to ensure that they treat patients and their families respectfully and communicate effectively.

​MN LEND can be a valuable resource for physicians to consult or to suggest to parents.

MN LEND can be a valuable resource for physicians to consult or to suggest to parents, and specific University of Minnesota programs also offer training and education for all health care professionals. These include:

Disability Policies and Services Certificate. Available through the College of Education and Human Development, this 12-credit program allows graduate students and community professionals to study policies and services that affect the lives of children, youth, and adults with disabilities. The certificate program covers existing policies and community services that can affect the lives of children, youth, and adults with disabilities to reduce the incidence of secondary conditions, improve access to services, and eliminate health, social, and economic disparities. The program examines the spectrum of education, employment, community living, and health policies affecting individuals with disabilities and their families, and surveys the public and private networks of disability services from an interdisciplinary perspective. While the program addresses the needs of people with all types of disabilities, it emphasizes intellectual and related developmental disabilities across the lifespan.

This certificate program is a collaborative effort of the Department of Organizational Leadership, Policy, and Development and the Institute on Community Integration (ICI) in the College of Education and Human Development (CEHD). Learn more at https://tinyurl.com/mp-certificate.

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Pediatrics residency training in developmental disabilities. This training helps prepare pediatric residents at the University of Minnesota to take leadership roles in the practice of family-centered, collaborative care based on the concepts of the Medical Home model when caring for children with special health care needs.

The program recognizes that future pediatricians are being educated with the technical skills to address the biomedical and psychosocial needs of their patients and families, but are not routinely taught about or given the opportunity to develop that same expertise in the practice of family-centered, collaborative models of care. Collaboration among physicians, allied health professionals, school and community service providers, and families is a cornerstone of the Medical Home model of care. Like technical skills, leadership skills in family-centered and collaborative care can and should be taught in residency training. Furthermore, training the Medical Home model is likely to be enhanced by non-clinically based learning experiences.

Program components include sessions on:

• “Community Resources: Understanding and Working With Community-Based Supports,” which focuses on participants’ own experiences with accessing and utilizing community-based resources and supports for families and children with disability/chronic illness. Community service providers present descriptions of and mechanisms for accessing a variety of government and non-government agency-based programs. Opportunities, barriers, and expectations of physicians to refer to and participate in these programs are explored from the perspectives of families, service providers, and physicians.
• “Moving-On: When Children with Disabilities and/or Chronic Illness Grow Up,” which presents real-life experiences of people caring for adolescents and young adults with disability/chronic illness. Discussions address developmental milestones and transition issues that arise with respect to education, employment, community living, emerging sexuality, health care transitions, and autonomy.
• “Putting It All Together,” in which participants discuss their own experiences during the rotation with respect to the concepts of the medical home model, with a particular focus on the key elements of family-centered care and collaboration. Facilitators draw upon the residents’ own experiences to help them gain a sense of willingness, confidence, and competence in their abilities to continually improve the care they provide.

Learn more at https://tinyurl.com/mp-residency.

Andy Barnes, MD, MPH, FAAP, is a Developmental-Behavioral Pediatrician and Assistant Professor of Pediatrics at the University of Minnesota Medical School, where he is the fellowship director for Developmental-Behavioral Pediatrics and the clinical director for MN LEND. Dr. Barnes is also on the faculty at the University’s Institute of Child Development; the Institute for Translational Research in Children’s Mental Health; the Center for Spirituality and Healing; and the Center for Neurobehavioral Development.

Beth Fondell is a Program Coordinator at the University of Minnesota’s Institute on Community Integration within the College of Education and Human Development. She directs the College’s graduate-level Certificate program in Disability Policy and Services. With three decades of experience in the public policy arena, Beth maintains a continual focus on facilitating collaboration between policymakers, families, and community leaders.

The MN LEND program welcomes Fellows from a variety of different professional, academic, and experiential backgrounds. Apply at https://tinyurl.com/mp-lend-apply.