The Health Transformation Learning Laboratory is a collaboration of the National Maternal and Child Health Workforce Development Center at UNC Chapel Hill (the Center) and the MCH Navigator; it serves as a repository for universal training resources/online learning materials in support of the Center's activities.
The Center currently focuses on three main topics: Change Management and Adaptive Leadership, Evidence-Based Decision Making, and Systems Integration. In addition, the Center has developed a number of learning resources focused on topics during its first funding cycle (2013 - 2016) that include Access to Care and Quality Improvement. In addition, the Center offers a Pipeline Program to enhance training and networking opportunities for graduate and undergraduate students and promotes Family Engagement and Health Equity in all of its activities.
Current and former trainees from Maternal and Child Health Bureau funded training programs met on April 5-7, 2017 in Seattle, Washington for the seventh annual Making Lifelong Connections meeting. The Making Lifelong Connections meeting brings together trainees in an interdisciplinary setting with the specific intent of enhancing networking and leadership skills, and providing professional development beyond the boundaries of a specific training grant setting. These activities provide reinforcement to the Maternal and Child Health Leadership Competencies and provide a real-world application of leadership skills for trainees as they prepare to enter the MCH workforce, and for former trainees in the early stages of their careers. Presentations and more can be found here.
Each year we have a combined seminar between our OKLEND program and the Interdisciplinary Training Program in Child Abuse and Neglect (ITP). Both training programs have an interdisciplinary focus but are different in the team members and focus. The ITP includes psychologist students and interns, social worker students, occasionally PT and OT students, and law students. The OKLEND consists of all the LEND disciplines including the family member and self-advocate. The faculty from both programs also participate. The seminar is trainee led and it includes readings and videotape presentations by the program directors (Mark Wolraich, M.D. OKLEND and Barbara Bonner, Ph.D. ITP) that the trainees are expected to read and listen to prior to the seminar. During the seminar, the trainees are expected to ask questions to Drs. Bonner and Wolraich about their presentations. They are also clustered into 4- to 6-person groups, mixing trainees from both programs. They work together to respond to questions about a theoretical case that includes both disability and abuse issues. The trainees are able to experience the differences both across disciplines and across systems, which have a different focus on child issues. We have now held the seminar for 12 years and it has provided an opportunity to explore similarities and differences, not only across disciplines but across different aspects of child services.
The Connections for Health: Integrated Group and Community Services for Kalihi Valley Keiki and Ohana, also known as "Healthy Tomorrows Hawaii", is a Healthy Tomorrows Partnership for Children Program grantee in Honolulu, Hawaii coordinated by Kokua Kalihi Valley Comprehensive Family Services (KKV), a Federally Qualified Health Center. "Healthy Tomorrows Hawaii" engages families in culturally appropriate ways in clinical and community settings, offering services in environments that are welcoming and engaging for families. The program is featured in the May 2017 e-newsletter of the National Center for Medical Home Implementation.
Healthy Tomorrows grantee, Community Health Center, Inc. of New Britain, CT, recently had a book chapter published in Practical Research with Children. The work of the "House of Teens: A Center for Health Promotion and Youth Advocacy for New Britain Teens” is described in Chapter 8: Qualitative research with a ‘Double Life’: A mixed methods approach to research and advocacy with adolescents (Jayme Hannay, Robert Dudley, Stephanie Milan, Paula Kellogg Leibovitz, & Valerie L. Rodino). In the chapter, the authors cite the Healthy Tomorrows project and make the point that, with a community-based participatory research framework, an intervention with teens can contribute to a sound research methodology.
Mallorie McKinnon, UF PPC Nursing Trainee: "Being a UF PPC trainee has allowed me to learn not only the importance of patient and family centered care, but also how to advocate for and apply it in my own clinical nursing practice. Working with my fellow PPC trainees, I have come to better understand the benefits of interdisciplinary collaboration and communication within both outpatient and inpatient settings to provide superior care to our pediatric patients. It has been a pleasure learning from such an enthusiastic and knowledgeable faculty, knowing that they are passionate about their work and their responsibilities within the PPC, making them a wonderful sounding board for difficult decisions and an advisor to turn to in times of need."
Taylor Gonzalez, Nardley Docteur, Sonnie Mayewski, UF PPC Social Work Trainees: "As social work trainees, being a part of the interdisciplinary team has given us the opportunity to learn from other disciplines and in doing so, provide the best and most comprehensive care to our patients. We have experienced that attending to various aspects of an individual’s functioning improves health outcomes. We believe that our discussions in Core Curriculum meetings have helped us become stronger leaders and communicators outside of this traineeship as well as helped us become better members of the PPC team. This opportunity has allowed us to be immersed in the pediatric healthcare setting while having the resources of fellow trainees and professionals. Having had the experience of being PPC trainees will guide and strengthen our future practice as social workers. We have grown into practitioners who effectively collaborate with numerous team members from a variety of disciplines, sharing ideas and increasing knowledge."
Parent Attitudes Toward Enhancing Cognition and Clinical Research Trials in Down Syndrome - This research project is an exploratory study which focuses on understanding parent attitudes towards scientific efforts such as the use of drug therapies that target intellectual functioning and cognition in individuals with Down syndrome. We expect there to be many factors that influence the range of these attitudes and interest in clinical drug trials, and hope to gain insight on the complexities associated with this decision-making process. The goal of this project is to delineate family attitudes regarding clinical trials in order to inform and advance the development and trajectory of treatments for Down syndrome in a way that is consistent with parent values. The project will continue after the 2016-2017 LEND program is over, with data collection, analyzation, and manuscript write-up continuing throughout the summer.
There is a paucity of research relating to parent opinions on ameliorating or treating certain symptoms associated with developmental disabilities, such as cognitive impairment. Little is known about the factors that contribute to a parent deciding whether treatments such as medication to “cure” their child’s disability are warranted, and the ethical and personal concerns pertaining to those perspectives and opinions. Multidisciplinary collaboration in both clinical and research work within the field of neurodevelopmental and related disabilities is imperative; this cooperative framework allows for a better understanding of the issues and treatment of the individual. Throughout LEND, I have learned the importance of continuing to act as an ally and advocate for individuals with disabilities, and to continue learning about the clinical, research, and policy work being conducted in this area.
Community Based Organizations Somali Development Center - At the Somali Development Center, I did a variety of legal work and assistance, as well as some other work for the organization. I was able to figure out legal issues from loan forgiveness to a cease and desist letter for a patent infringement. These are opportunities that are truly not available to many law students and I feel fortunate to have been able to experience this. I also helped produce a grant proposal that the SDC will be using to show the need for Congressional funding. I loved working at the SDC and look forward to helping there in the future.
I learnt the value of offering your time to an organization who truly needs it. It was very rewarding to help the Somali and African refugee community at the SDC.
Community Based Organizations Somali Development Center - Throughout the year, I had the pleasure of volunteering with Partners for Youth with Disabilities (PYD) in their Access to Theatre program. The program included weekly acting classes that provided children and adolescents with the opportunity to develop skills in teamwork, selfexpression, and creativity. The participants, who have a myriad of disabilities, absolutely thrived in this setting, which was beautifully adapted to meet their needs. Each week, I was so impressed by the ideas and interactions of these participants. I always left with a smile on my face and cannot wait to continue my involvement with this organization in the future.
LEND completely changed my life in so many ways. First, through the weekly seminars, I learned a great deal about services, health policy, cultural competencies, and other issues related to Developmental Disabilities (DD). Second, because my colleagues hail from various disciplines, I gained a global understanding of the diverse resources available to individuals with DD and their families. Third, through the Disability Policy Seminar experience, I developed competency in advocacy at a political level and realized how powerful conversations with legislators can be. Finally, LEND has not only given me a new network of colleagues, but it has also given me a new group of best friends. The people that I have met through LEND are some of the most wonderful, compassionate, and enthusiastic professionals that I have ever met. I will always be thankful for what I have learned from them.
Partners for Youth with Disabilities (PYD) – Helped organize a sensory friendly Santa event at the Prudential Center, worked with children to make holiday cards for veterans, and worked on fundraising for the annual party for PYD.
Research - Practical Aspects and Implications of Variant Interpretation in the Clinical Setting investigated the implications of genetic variant interpretation and review in pediatric and oncology clinical settings to better understand the impact on medical management of patients.
Clinical - Genetic counseling intern at Seattle Children’s Hospital (general pediatrics and pediatric oncology), Boston Medical Center (in oncology and prenatal settings), and Beth Israel Deaconess medical center (in the center for Maternal-Fetal Medicine).
My time at LEND has been an invaluable experience. It has expanded my understanding of the disability community and allowed me to become a stronger advocate for my patients and families. It has also highlighted the effectiveness of an interdisciplinary team and helped me understand how my role as a genetic counselor fits in. I’ve not only made some wonderful connections within the medical field, but developed lifelong friendships with all of the fellows! I couldn’t be more thankful to have had this opportunity.
Birth to Three Family Center, Ipswich, Massachusetts - Attended playgroups of children ages 0 - 5 years old, developed and presented a parent training entitled, “Letting Go of Their Little Hand: Preschool A Child’s First Step Towards Independence.” This presentation was geared towards parents of rising three-year-olds both transitioning from Early Intervention services and typically developing children.
Before LEND, as a mother of a child with communication, neurological, and learning disabilities, as well as, using my education background as a special education advocate and educational consultant, I was doing my part to help families on their respective IEP/504 journeys. In many cases, I was learning as I was navigating the school systems and doing my best to learn about Medicaid, DDS, DMH, etc. as needed. Throughout LEND, my understanding of these programs has broadened to a deep understanding about referral, applications, and processes. I learned of DPH programs that I did not know existed and can directly benefit my family and clients. I have already connected two families with MASSSTART. Being a LEND fellow has given me critical information that will directly impact families in the community and has helped me to form a network of professionals that I will rely on in the future and I hope will rely on me if I can help them in any way.
Upon learning that BookShare, a program for individuals with print disabilities was a proposed federal budget cut, began to focus my efforts at the Disability Policy Seminar and beyond to advocate to save this invaluable program. This included speaking to staffers from Massachusetts Congress members and attending local town hall meetings.
Residency - My involvement in the Boston Children’s LEND program has been in collaboration with the Boston Children’s Hospital’s Occupational Therapy Residency program and places my participation throughout this year within the clinical track. The residency program is approved and supported by the American Occupational Therapy Associated and is detailed as an opportunity for advanced post-professional clinical experience, designed to develop clinical experts and leaders in specific areas of occupational therapy practice. The Boston Children’s Hospital’s OT Residency is specific to pediatric practice and has been an incredible experience for both my professional and personal development. The program, which I began in September 2016, is an eleven-month opportunity organized by a 5-module rotation. Upon completion, I will have spent time in each setting of BCH occupational therapy inclusive of inpatient, outpatient, early intervention, augmentative communication/assistive technology, psychiatry, and pain rehabilitation. I have had the distinct pleasure and incredible fortune to work with and learn from esteemed mentors and leaders in order to advance my clinical skills and my ability to provide collaborative and all-inclusive care to the complex and unique children we see in practice at BCH.
The LEND program has been an invaluable compliment to my clinical work as the occupational therapy resident. The ability to work within an interdisciplinary team of enthused, motivated and talented individuals has facilitated a degree of vigor in my practice and opened lines of communication that will undoubtedly foster ongoing collaboration in the future. It has been a pleasure to return to a learning environment each Friday and to then implement new knowledge into my practice throughout the week. I recognize now, the power of the the Association of University Centers on Disabilities (AUCD) and University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) and how huge a difference a group of dedicated professionals can make for the children we work with. My clinical practice, research efforts, advocacy experience and community engagement across this year within the residency and LEND have taken my work to the next level and will continue to shape what I do and how I work for the rest of my career.
Third year UCSD DBP Fellow Dr. Sai Iyer is highlighted in Pediatric News for her research on the 10-item Early Literacy Assessment Tool (ELSAT), which is used to screen preschool children for delayed literacy skills.
I recently had the privilege of connecting with many other MCH trainees and former trainees at this year’s Making Lifelong Connections (MLC) Meeting. I had the opportunity to attend the conference as a member of a team from the Trainee Ambassador Group that is working on a new trainee mentoring initiative. I must admit that I was not sure what to expect going in to the meeting, but after experiencing the event, I was inspired to comment on how meaningful it proved to be for me as a Developmental Pediatrician in training.
Prior to the MLC meeting, I did not have a full understanding of the different MCHB trainee programs or their various attributes. While at MLC, I had the chance to meet others in each of the training programs, to better understand our respective roles, and to consider how we can work together as an interdisciplinary force for maternal and child health. I heard about creative projects being completed by my colleagues, which led to the generation of new ideas that I could take back to my home program.
Getting the opportunity to consider issues alongside peers from different disciplines pushes one to think creatively and often introduces a new perspective. This can prove to be invaluable, and as one who practices medicine, I found that hearing from my colleagues outside of my specific discipline led me to consider approaches to problems or ideas that were "outside of the box." As I sat down at tables next to my peers, I discovered that, while our day to day schedules may look completely different, we were all working toward a common purpose, and this was extremely encouraging.
The strength of the MLC meeting is that it is a rare opportunity to bring trainees together in a way that generates meaningful ideas and important connections. I left the event not only with new friends and colleagues, but also with inspiration and energy after seeing such a diverse and committed group of trainees united behind a common purpose.