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Highlighting Autism Awareness Month

Division Highlights

DMCHWD is pleased to highlight Autism Awareness Month in April by highlighting the work of our grantees and trainees, as well as upcoming autism-related events.


Report Released – Efforts to Improve Autism Spectrum Disorder Service Delivery Under the Autism CARES Act

HRSA has released a final report to provide an update on grant-funded activities and MCHB grantees’ progress in improving services for autism spectrum disorder (ASD) and other developmental disabilities (DDs) through training, research, and systems change initiatives.


Updated HRSA Autism Infographic

From Fiscal Year (FY) 2014 to FY 2016, over 340,000 children received diagnostic evaluations through MCHB’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) and Developmental Behavioral Pediatrics (DBP) Training Programs. Learn more about how HRSA works to address autism through the recently updated HRSA Autism Infographic.


MCH Timeline websiteMCH Timeline

The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 reauthorized existing federal autism programs through 2019. Learn more about autism-related points in history and more on the MCH Timeline.


 

Grantee Highlights

Waisman Center, University of Wisconsin-MadisonWisconsin Hosts 2019 State Public Health Autism Resource Center (SPHARC) Peer-to-Peer Exchange

The annual sponsored meeting of MCHB-funded state systems initiatives to improve autism services called the “Peer-to-Peer” Exchange will take place in Madison, Wisconsin on April 16-17, 2019. The four states (WI, DE, RI, WA) currently funded through Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program grants will be joined by several states who had been funded previously. The State Public Health Autism Resource Center Exit Disclaimer (SPHARC) coordinates the meeting, and the host state provides a forum and local/regional expertise. 

This year’s Peer-to-Peer Exchange will focus on using data and quality improvement to advance health equity, which is a major strategy of the Wisconsin Care Integration Initiative (WiCII) grant funded 2016-2019 to the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center, University of Wisconsin-Madison. The Wisconsin Care Integration Initiative is co-led by Waisman Center researcher Maureen Durkin (PI), Gail Chodron (co-PI, WI Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Director) and Anne Harris (co-PI, WI LEND Director), and team members Kari Mueller (Project Coordinator) and Lynn Hrabik (Project Evaluator). WiCII has focused on reaching medically underserved families of children with, or at risk for, autism and other developmental disabilities who have not been able to access services. For some individuals with autism and other developmental disabilities and their families, inequities based on race, ethnicity, socio-economic status, and location of residence make it exceedingly difficult to reach their full potential for health and life in the community. Quality improvement (QI) and data-driven approaches provide strategies and information to target modifiable aspects of providing access and care delivery to advance health equity. Meaningful engagement with individuals most affected by inequity helps ensure that change efforts are locally valued, effective, and sustainable. A significant focus of the work in Wisconsin has been funding community partners to offer family navigation, ensure accessible shared resources, and cultivate opportunities to use telehealth to improve access to services. WI LEND trainees have participated in community-based activities such as community conversations and parent focus groups in urban Milwaukee and rural locations (Northwoods and southwest WI), data collection and analysis, literature reviews and information dissemination for WiCII. Significant progress has been made in identifying barriers and enablers for access to services in underserved populations in Wisconsin.

The Peer-to-Peer Exchange in 2019 aims to increase knowledge and skills of state teams to use data and QI to advance health equity through a variety of learning activities. Participants will have opportunities to engage with peers, individuals impacted by inequity, providers, and policy experts. The following strategies for advancing health equity will be threaded throughout all of the activities: 1) using data to identify disparities, 2) engaging in local data collection and tests of change to monitor progress, and 3) partnering with community members to ensure sustainable change.


University of Alabama at Birmingham (UAB) LEND 2019 Update for Autism Awareness Month

6th Annual Autism Friendly Game BaronsThe UAB LEND incorporates autism awareness throughout their daily work in clinical settings, training, and community outreach. Recent highlights include co-sponsoring the 18th Annual Alabama Autism Conference in February, which focused on “Building Communication in autism spectrum disorder (ASD) by Strengthening Skills and Systems,” with nearly 500 participants attending the day-long event, including educators, clinicians, trainees, caregivers, and self-advocates. Community awareness activities include supporting the Autism Society of Alabama and collaborations with other local and state organizations during the month of April and year-round, including co-sponsoring and participating in the 6th Annual Autism-Friendly Birmingham Barons baseball game on April 14th. Several LEND faculty participate in the state Autism Council and associated workgroups, with contributions to revisions of the statewide strategic plan and providing technical assistance to state departments as Alabama works to improve the systems of care for individuals with ASD and their families. Finally, the UAB Regional Autism Network, a component of the UAB LEND and UCEDD, which is funded by the Alabama Department of Mental Health, continues to expand its impact in providing monthly community education workshops for caregivers of individuals with autism spectrum disorder, with 2019 topics including addressing challenging behaviors, navigating the school system, and toilet training.   


Links to Development Matters! Poster.University of Kansas LEND – Development Matters!

Learn about red flags for ASD and early intervention through the University of Kansas LEND Development Matters! Poster.

 

Trainee Highlights

University of Minnesota Trainees

Sarah Garcia, MNLEND Trainee - Project Explores Low NDD Prevalence Rates in Hispanic/Latino Children in U.S.

Sarah Garcia is a Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND Exit Disclaimer) fellow and PhD candidate in the Department of Sociology at the University of Minnesota. Sarah's research focuses on the intersection of health, disability and society. Sarah's MNLEND project uses nationally representative data to examine explanations for the low prevalence of neurodevelopmental disabilities (NDD) among Hispanic/Latino children in the United States. She finds that while Hispanic/Latino children born in the U.S. have lower rates of NDD than white children, Hispanic/Latino children who were not born in the U.S. have even lower rates of NDD than Hispanic/Latino children who were born in the U.S.

Sarah is presenting preliminary findings of this project at the annual American Association on Intellectual and Developmental Disabilities (AAIDD) conference in June. She also has a co-authored paper from this work with Drs. Jennifer Hall-Lande (MNLEND alumni) and Kelly Nye-Lengerman, both of whom are University of Minnesota ICI (UCEDD) Research Associates. Their collaborative paper is currently under review at the Journal of Racial and Ethnic Health Disparities. MNLEND has given Sarah new knowledge of NDD, from the barriers and issues surrounding screening and interventions to a deeper understanding of the importance of policy for families and people with NDD. Sarah plans to pursue a tenure-track faculty position in Sociology after the completion of her PhD and will use the knowledge gained during LEND to become a leader in the field of disability studies.   


Doaa Elgaali, MNLEND Trainee - Supporting Children with Neurodevelopmental Disabilities and Families across Minnesota Muslim Communities

As part of her MNLEND project, Predoctoral Fellow, Doaa Elgaali, is supporting a local parent and teacher, Abdulkadir Diriye, who began an inclusive Dugsi (Sunday School for Muslim youth) for children with neurodevelopmental disabilities (NDD) / intellectual developmental disorders (IDD) in the Twin Cities metro area. In this project, Doaa is listening to families’ needs and wants, developing evidence-based classroom materials for the school children, and planning community events for the families to share their stories and evidence-based resources. Fluent in Arabic and a former Dugsi teacher herself, Doaa hopes to support the many families in the Dugsi project. She is planning a community event that will feature a film from the series “On the Autism Spectrum: Families Find Help and Hope" that seeks to raise awareness and understanding of autism spectrum disorder (ASD) and services available to Minnesota families within the following communities: African American, Hmong, Latino, Native American, and Somali. These films were produced with funding from the Minnesota Department of Human Services by the University of Minnesota’s Research and Training Center on Community Living (RTC-CL), housed in the Institute on Community Integration (ICI-UCEDD). The films provide support, encouragement, and direction for families experiencing ASD within communities who have historically lacked full access to available resources. Each 15- to 20-minute film features interviews with parents, advocates, medical professionals, educators, and community leaders speaking in the language of the specific community, with subtitles available in English.

Doaa set a LEND goal to support and learn how to better provide evidence-based care to children with NDD from underprivileged communities. In her project, Doaa helps to ensure children have access to resources and social supports that can enable them to lead successful, independent adult lives.

The Dugsi project is led by two RTC-CL (ICI-UCEDD) Diversity Disability Fellows, Ashwak Hassan (MNLEND alumna and mental health therapist) and Sheyhan Gelle (parent and county-level social worker). With their and Abdulkadir’s mentorship, Doaa is excited to complete a project that benefits the children at the inclusive Dugsi school. Doaa is completing her first year as a Master of Public Health graduate student with a concentration in Maternal and Child Health. She is originally from Iowa.


Nasteha Mohamed, MNLEND Trainee

Nasteha Mohamed is a MNLEND Predoctoral Fellow based in the University of Minnesota’s Master of Social Work program. As a social worker, she provides services tailored to the needs of culturally diverse healthcare consumers and their family members. She works closely with the Minnesota Somali community addressing healthcare disparities and social determinants of health. This community has a lot of preconceived notions around vaccines and autism and, as a result, was hit the hardest by the measles outbreak. The Somali community has been targeted by anti-vaccine messages, which has affected vaccination rates among Somali children. The Somali community, per Nasteha, is uniquely vulnerable and is looking for answers. As part of her 2018-2019 LEND project, Nasteha uses her social work background with community healthcare to mitigate the gap between healthcare professionals and the community. Her project involves three different components related to research, psychoeducation and resources for the Somali community to educate the community and dispute the link between the measles, mumps, and rubella (MMR) vaccines and autism.


Tera Girardin, MNLEND Trainee - Developing Podcast for Families

A new podcast series for families with newly diagnosed children with autism and developmental disabilities is under development by current Minnesota LEND Fellow Tera Girardin, as part of her LEND project. The podcast will be hosted by a former LEND Fellow, Dr. Beth Dierker, now Executive Director of Communities Engaging Autism (CEA). Both Beth and Tera are autism parents themselves. Tera is also the author & photographer of the book Faces of Autism. The podcast series is a way to provide helpful information to families, conversational in tone, yet at the same time grounded in research. The podcast is meant for families who are wading through the information and decisions that come along with an autism or developmental disability diagnosis. The podcast, entitled The Oxygen Mask Podcast, will include six episodes for its first season.

Per Tera, the title for the series comes from the idea that, just as you are instructed to do before an airplane takes off, families will need to put on their own masks before assisting others. In the same way, family members need to learn to take care of themselves to be able to better help their newly diagnosed children. Tera said, “We want to provide families an oxygen mask, or a breath of fresh air and a pause, for parents who are navigating their families’ journey with autism or other developmental differences.” Themes for the planned podcast include self-care while caring for others, person-centered thinking, relationship strains, avoiding burnout and information overload, and learning to trust your internal compass. The first episode launches in April 2019 and will be distributed through the Communities Engaging Autism website Exit Disclaimer, Tera Photography website Exit Disclaimer and other podcast and social media platforms.


Trainee Ambassador GroupCatherine Yount “Time With TAG”

I did not begin my education with a desire to work in public health, much less maternal child health or with children with neurodevelopmental disabilities. In fact, I did not know that public health was a field you could get a degree in until at least a year after I began college. I had a broad and eclectic set of interests that did not fit neatly into any major: I enjoyed biology, but had no interest in being a physician; I loved history, sociology, psychology, performing arts, and political science, but I couldn't commit to any one field without feeling like something was missing.

That changed for me when I had the opportunity to study abroad at the University of Ghana, Accra. I lived in Ghana for 5 months and completed an internship with a school for children with neurodevelopmental disabilities. I saw the challenges that faced their families and the complex ways that they navigated the infrastructure and systems of care around them. I learned from children and families what it is like to have a disability in a place with limited codified protections for people with physical and neurological differences. I saw the work that advocates and activists were doing to influence the rapidly changing infrastructure of a previously colonized country to make it easier for all people to live to their highest potential.

My time in Ghana and the people I met there had a profound influence on me, and I knew that I wanted to work to improve the lives and circumstances of children with disabilities and their families. After returning to California, I pursued a Masters in Public Health and found the Leadership and Education in Neurodevelopmental and Related Disabilities (LEND) program at Children’s Hospital, Los Angeles. As a LEND Trainee, peers and faculty taught me about the seemingly endless disciplines, infrastructures, and systems of care that must be taken into consideration when determining the best way to support children with disabilities and their families. My LEND experience made me a better public health professional and I recently sought out opportunities to give back, which led me to join the 2019 cohort of MCHB’s Trainee Ambassador Group (TAG). I am looking forward to facilitating the growth of future leaders in the field!


Trainee Ambassador GroupSandhyaa Iyengar “Time With TAG”

A very wise mentor once told me that, after every clinic day, I should go home and eat a spoon of ice cream. Mind you – not a bowl, but a spoon – slowly savored. At first the advice was blindly (and sinfully) followed, but over time I learned why it was such a sacred rule. As a clinician taking care of children with neurodevelopmental disabilities, my days are often filled with anxiety-ridden encounters trying to empower families to help their children achieve their best outcomes. As other professionals who care for children and families may agree, such days require bottomless empathy, conviction, and patience. At the end of the day, a sweet and slow moment at the kitchen counter, tub of ice cream in hand, has the ability to rejuvenate my spirit. I use such moments of quiet reflection often in my work, typically before I see my next patient.

There are several other ways to stay grounded when working with children and families. During my developmental and behavioral pediatrics (DBP) fellowship I’ve learned how to artfully manage complex diagnostic and treatment situations. Most of those strategies begin with active listening, the practice of being wholly attuned to the person in front of you. Such steadfast clarity of purpose allows me to understand my patients in a comprehensive way. My experience in Leadership in Neurodevelopmental Disabilities (LEND) was integral in helping me appreciate this practice, and in general the importance of understanding the context of children’s lives. LEND emphasized interdisciplinary care; for example, from my occupational therapy colleagues I learned how sensory accommodations can improve attention and focus, and through collaboration with audiology I learned how even subtle hearing deficits can affect development. This has made me a better clinician and has also let me enjoy my work more.

Another important way to stay grounded is by being part of a community of like-minded professionals. The Maternal and Child Health (MCH) network is vibrant and diverse. The Trainee Ambassador Group (TAG) has the privilege of building bridges so that individuals across training programs feel supported and celebrated, and that in turn can help trainees feel refreshed for their daily work. I am so grateful for the opportunities to be part of DBP and LEND, so now I feel well-equipped to make a difference for children who have developmental differences. As I enter my second term on the TAG, I look forward to giving back to this community that has nurtured my professional development for so many years. My first decree to my colleagues is, after reading this, please go enjoy your spoon of ice cream!


Former LEND Trainees

Angela Panagos

Former Speech-Language Pathology LEND Trainee, Westchester Institute for Human Development

I am currently working as a Speech Language Pathologist for a school on Long Island, NY for children/adolescents with disabilities. The students I work with have varying degrees of disabilities, including autism spectrum disorders and Down syndrome. I also work closely with other disciplines, including physical therapists, occupational therapists, and classroom teachers. I keep in touch with parents on their child's progress and any information they would like to know.

I would not be as confident in my skills as a Speech Language Pathologist if it were not for my experience in the LEND program. I learned how to be a successful, professional public speaker, which has impacted me greatly in my career. I had the opportunity to learn about all disciplines, many of which I work with on a daily basis. LEND has also given me opportunities for continuing education, including the Making Lifelong Connections Exit Disclaimer conference and introducing me to the Sibling Leadership Network. I am grateful for my time in LEND and hope to continue to keep in touch with the program.


Margaret Souders, Ph.D., CRNP

2001-2002 Nursing LEND Trainee, The Children’s Hospital of Philadelphia (CHOP)

I have dedicated my life work to caring for vulnerable children and their families. My connection to these children runs deep. I am a former orphan, cared for by the Sisters of Charity Foundling Home in New York. In 1869, three Sisters of Charity opened the doors of this home to save the lives of babies abandoned on the streets of New York City. The Sisters’ ministry evolved into a comprehensive spectrum of community support services designed to empower vulnerable children and families. With their support, my story is a happy one – a wonderful Brooklyn family adopted me. Though they were never able to graduate from high school, my parents instilled in me a great love for learning and a strong moral compass. Today, I describe myself as a “fighter” who advocates for children whose neurodevelopmental conditions might keep them from speaking for themselves.

My nursing career started in the Pediatric Intensive Care Unit at The Children’s Hospital of Philadelphia (CHOP) taking care of some the sickest children in the world with severe cardiac anomalies. Over the past two decades, I have cared for children and adolescents with autism spectrum disorder (ASD) and their families as a nurse practitioner. I had the great opportunity to participate in the LEND fellowship training at CHOP from 2001-2002. This training provided me with an excellent foundation for understanding my responsibility in a multi-disciplinary team of providers and becoming a strong leader in the care of vulnerable children.  I am delighted about my role as Clinician Educator – Assistant Professor at the University of Pennsylvania, School of Nursing. This role allows me to combine teaching, practice and research to improve care delivery to these children. I am a nationally and internationally recognized clinician caring for children with ASD and a renowned sleep researcher and collaborative scientist contributing the body of evidence I use to better their lives. I am also the Director of a Minor in the Integrated Nursing Care of Children with Autism Spectrum Disorder at the University of Pennsylvania and I am thrilled to teach undergraduate and graduate students about ASD. In 2016, I became the Nursing Discipline Director for the LEND Program at CHOP and I annually recruit talented trainees for our fellowship program and oversee their LEND Nursing fellowship. It has been a great honor to work with the dedicated LEND Nursing Fellows.

I currently practice in the Child and Adolescent Psychiatry Department at CHOP. My students from the Minor in the Integrated Care of ASD participate in my clinical practice. I conduct two new comprehensive autism diagnostic evaluations a week and provide my students with state of the science diagnostic experience, including a genetic dysmorphology assessment.  I also have one full patient panel each week and provide follow-up care to eight families. Ongoing care includes anticipatory guidance for health maintenance, behavioral care and medication management for co-occurring psychiatric disorders.  In addition, if a child with ASD has insomnia I am able to provide Cognitive Behavioral Therapy for Insomnia (CBT-I). Over the past 3 years, I have been able to directly help over 700 families with children with neurodevelopmental disorders fall and stay asleep with evidence that I have generated from my research endeavors at the School of Nursing.  I am thrilled that my practice affords me the opportunity to translate cutting-edge knowledge, such as the identification of genetic syndromes associated with ASD and tailored behavioral treatments, immediately into direct patient care. 


Amy Weinstock

2004-2005 LEND Fellow, University of Massachusetts Medical School

I completed my LEND fellowship at the E. K. Shriver Center at UMass Medical School in 2005 and am now the Director of the Autism Insurance Resource Center at the Shriver Center, and an instructor in the Department of Psychiatry at University of Massachusetts Medical School.  My extensive background in insurance issues related to autism has played a major role in passing several significant pieces of autism insurance legislation in Massachusetts, including the groundbreaking 2010 ARICA law. This law requires health insurance to cover medically necessary treatment for autism. I also serve as a Commissioner on the State's Autism Commission.

Following a successful career in real estate and banking, I decided to merge my personal passions and professional experience. I joined the Shriver Center’s LEND program in 2004-05 where I researched and incubated my ideas and work on expanding insurance coverage for autism services. I served as president of the outreach organization of the Lurie Center for Autism at Massachusetts General Hospital for two years prior to being appointed Chair of the Insurance Committee for Advocates for Autism of Massachusetts (AFAM).

My work has been recognized through numerous awards including the Federation for Children with Special Needs Martha H. Ziegler Founders Award, the Margaret L. Bauman Award for Excellence, the Massachusetts ARC’s Distinguished Citizens Award, the Doug Flutie Jr. Foundation Essential piece award, and the Northeast ARC’s Edward C. O’Keefe Memorial Award.

 

Events

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting
Wednesday, April 17, 2019, 9:00 AM – 5:00 PM ET
National Institute of Mental Health, 6001 Executive Boulevard, Neuroscience Center Conference Rooms C and D, Rockville, MD
Webcast available

The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities.


NIMH Special Event for Autism Awareness Month - A Woman’s Voice: Understanding Autistic Needs
Tuesday, April 23, 2019, 2:30 – 5:00 PM ET
NIH Main Campus, Porter Neuroscience Research Center Building 35A, Room 620/630 (Ground)
9000 Rockville Pike, Bethesda, MD
Webcast available

The National Institute of Mental Health (NIMH) Office of Autism Research Coordination (OARC) is pleased to invite you to attend their annual special event to recognize National Autism Awareness Month, A Woman’s Voice: Understanding Autistic Needs. NIMH will be hosting a Panel Presentation featuring four authors of the book Spectrum Women: Walking to the Beat of Autism, Barb Cook, Liane Holliday-Willey, Ed.D., Becca Lory Hector, CAS, BCCS, and Dena Gassner, L.M.S.W. The panel will also include Jennifer O'Toole, author of Autism in Heels: The Untold Story of a Female Life on the Spectrum. Panelists will discuss their books and life from the perspective of a female on the spectrum. There will be a book signing/meet and greet before the panel discussion in the FAES bookstore.


What is Transition Planning for a Teen with an ASD Diagnosis? Exit Disclaimer
Thursday, April 25, 2019, 11:30 AM – 12:30 PM ET
3rd Floor Conference Room – Creamer Building 3901 Greenspring Ave, Baltimore, MD

This presentation is for parents who have teens with ASD who are planning for a transition from school to college, employment, and/or community. Transition planning can be confusing and this session provides an opportunity to learn about the process. Resources will be shared.


Understanding the Link Between Environment, Nutrition, and Autism: Examining Approaches to Reduce Risk
Podcast

This podcast will review more about autism and what National Institute of Environmental Health Sciences-funded researchers are doing to understand gene-by-environment contributions to autism. The podcast will also share how prenatal vitamins may be useful in reducing the risk of autism.


Diversity in Autism Spectrum Disorders Exit Disclaimer
Archived Webinar

Hear about national work and discuss issues pertinent to diversity issues in ASD. Brian Be, an artist, self-advocate, peer mentor and LEND fellow with the University of Colorado moderates a three-person expert panel presentation and facilitates questions and comments from webinar participants.

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