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General Information  

2018 Children and Youth with Special Health Care Needs (CYSHCN) Outreach Survey 

The Children and Youth with Special Health Care Needs Outreach Survey is now open! Maternal and Child Health at DSHS is currently conducting a survey of families that have a child with special health care needs. This assessment will help guide our activities to improve the health of Texas families. We are seeking input from ANY Texas family who has a child or young adults age 18 or older with special health care needs. Survey participation is voluntary and anonymous, and the survey should only take 15 minutes to complete. The survey closes August 31, 2018. 

Take the survey in English

Take the survey in Spanish

Texas Health Steps announces two new courses.

ADHD: Diagnosis and Management provides information to equip Texas Health Steps providers and others to recognize attention-deficit/hyperactivity disorder (ADHD) in children and adolescents and to provide guidelines for diagnosis, management, referral, and continuity of care in the medical home. ASD: Diagnosis and Management provides information to equip Texas Health Steps providers and others to recognize autism spectrum disorder (ASD) in children and adolescents and to provide guidelines for diagnosis, referral, and continuity of care in a primary care setting.

Texas Health Steps’ award-winning online program offers FREE CE courses for primary care providers and other health professionals. These courses offer updated clinical, regulatory, and best practice guidelines for a range of preventive health, oral health, mental health, and case management topics. For more information and to see a complete list of courses go to

AMCHP National Standards for Systems of Care for CYSHCN

The Association of Maternal & Child Health Programs just released a new interactive website for the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0. This tool strives to serve the nation’s 14.2 million children and youth with special health care needs. Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs sets the core components for the structure and process of effective systems of care while streamlining content for easier use by states and stakeholders. Visit the website here:

Emergency Readiness Toolkit
The Eunice Kennedy Shriver Center worked with an advisory committee of parents of children with special needs to create a curriculum that increases preparedness knowledge and allows for successful emergency planning. The curriculum includes a toolkit, tip sheets, and a template for a personal emergency plan. There are also resources on sharing information about a child’s unique needs with first responders. 
View the toolkit  

Including People with Disabilities: Public Health Workforce Competencies
The Association of University Centers on Disability (AUCD) has developed a new resource that outlines recent advances in knowledge and practice skills needed by public health professionals for including people with disabilities in the core public health functions – Assessment, Policy Development and Assurance. 
View the resource  

Innovations in Supporting Families Webinar
The National Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities recently presented a webinar on Life Course in Action: Implementation at All Levels in Missouri. The webinar has been archived as a series of videos demonstrating implementation of life course tools at the individual and family, professional, organizational, community, and systems levels.
View archived videos  

Family Stories Photography Project
The Lucile Packard Foundation for Children’s Health recently family photo essays from a photography project that documents the lives of families who have children with disabilities or chronic medical conditions. Families are also invited to share their own stories on the project webpage.
View the stories  

Navigate Life Texas Regional Pages
The Navigate Life Texas Regional Pages include blog articles with facts and tips as well as local events, services and organizations and support groups.
Visit the site  

Medical Home Information  

Resource for Practices: Patient-Centered Medical Home and Got Transition's Six Core Elements

Got Transition has developed a new tip sheet (PDF) to assist practices that are looking for resources to obtain certification on transition from the National Committee on Quality Assurance Patient-Centered Medical Home. Got Transition's goal is to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.

Shared Plan of Care: A Tool to Support CSHCN & Families
The National Center for Medical Home Implementation and the National Academy for State Health Policy have published a new fact sheet including recommendations for content to include in a plan and examples of templates and tools. This resource is intended for use by clinicians, families, providers and state agencies. 
View the fact sheet  

Cultural and Linguistic Competence Health Practitioner Assessment
The National Center for Cultural Competence has developed a self-guided tool to improve delivery of culturally competent services for diverse populations. Clinicians who complete the self-assessment will receive a report with professional development and educational resources related to cultural and linguistic competence.   
View the tool  

Clinical Report: Recognition and Management of Medical Complexity
The American Academy of Pediatrics Council on Children with Disabilities has released a Clinical Report that describes children with medical complexity and provides strategies to optimize medical and health outcomes for this sub-population of children with special health care needs.      
View the report  

Thinking Outside the Box: How to Advance Health Equity and Care Quality in the Pediatric Medical Home
This three part recorded webinar series from the National Center for Medical Home Implementation provides pediatric clinicians, Title V programs, families and other stakeholders with tools, resources, and strategies to enhance the patient and family experience in the pediatric medical home. This includes but is not limited to the experience of diverse, vulnerable and medically underserved populations.
View webinar recordings and materials  

Coordinating Care for Kids – School Nurses Linking with the Medical Home
This recorded webinar provides practical examples and resources on how school nurses, community-based clinicians, and other providers can implement care coordination successfully. School nurses, a family physician and a pediatrician share experiences and approaches to care coordination with a focus on collaboration. 
View the webinar recording and materials  

Medical Home Toolkit
The Texas Parent to Parent Medical Home Toolkit includes resources detailing what a medical home is, how to become a parent partner in the doctor’s office, a medical home checklist, questions to ask when choosing a doctor, and much more. All components of the Medical Home Toolkit are free and available for download on the Texas Parent to Parent webpage. 
Download the toolkit  

Call for Applications: Innovative and Promising Practices in Pediatric Medical Home Implementation
Showcase your work through the National Center for Medical Home (NCMHI) by completing an application for innovative and promising practices in pediatric medical home implementation. All pediatric medical home stakeholders are eligible to apply. This includes but is not limited to clinicians, practices, family organizations, community-based organizations and state agencies.  Applications can be submitted via online form or applications can contact for a printable application. View the online application  

National Center for Care Coordination Technical Assistance
The mission of the National Center for Care Coordination Technical Assistance (NCCCTA) is to support the promotion, implementation and evaluation of care coordination activities and measures in child health across the United States. Tools, resources, and technical assistance are available on the care coordination webpage of National Center for Medical Home Implementation website within the technical assistance and support section.
Learn more about NCCCTA  

The Care Coordination Conundrum
The Catalyst Center, with support from the Lucile Packard Foundation for Children’s Health, has published a report on the provision and financing of care coordination. The Care Coordination Conundrum and Children and Youth with Special Health Care Needs is available for download on the Lucile Packard Foundation for Children’s Health website.
Read the report  

Medical Home Education Modules for Pediatric Residency Programs
A series of five case-based, educational modules on key medical home principles for pediatric residency programs are now available from the American Academy of Pediatrics. Modules are intended to be incorporated into existing curriculum by residency program directors and faculty. The modules educate residents about characteristics and benefits of the patient- and family-centered medical home, care coordination, care planning, transition to adult care and team-based care. 
Read the report

Transition Information  

ACCEPT (Allies Cultivating Change by Empowering Positive Transformation)
ACCEPT is a group of youth and young adults ages 13-25 from across Texas who work together for system transformation by supporting partnerships between youth, young adults, and organizations. Members use their lived experience and that of their peers to help inform and drive system improvements. ACCEPT is currently recruiting a diverse group of youth who are committed to helping in these transformation efforts. This is also a great leadership opportunity for youth to represent communities and organizations. All youth and young adults are invited to apply. Please feel free to share this information with any coworkers, agencies, or youth who might be interested. Applications should be submitted to David McClung at  

Online Continuing Medical Education (CME) Course on Six Core Elements of Health Care Transition
The Health Care Transition for Adolescents and Young Adults CME course is sponsored by the Health Services for Children with Special Needs, the National Alliance to Advance Adolescent Health/Got Transition, and the District of Columbia Department of Health. This is an hour long course that presents the experiences of pediatric, family medicine, and internal medicine leaders from DC who piloted the Six Core Elements as part of a transition learning collaborative. 
Register for the course  

Got Transition Frequently Asked Questions Now Available in Spanish 
Got Transition has updated their website to include the Spanish translation of Frequently Asked Questions for youth and families to learn about the transition to adulthood and the Six Core Elements of Health Care Transition. The English version of this resource can be viewed by clicking on the “Youth & Families” section of
View the resource in Spanish  

Toolkit for Primary Care Providers: Health Care for Adults with IDD
Tools developed by the Developmental Disabilities Primary Care Initiative (DDPCI) in Ontario, Canada have been incorporated into a new online toolkit for primary care providers by the Vanderbilt Kentucky Center for Research on Human Development and partner organizations.  The toolkit includes topics of general primary care issues, physical health issues, health watch tables and behavioral and mental health issues. 
Access the toolkit  

Becoming ABLE Ready Archived Webinar
The Achieving a Better Life Experience (ABLE) Act National Resource Center has archived a webinar that helps youth and families to understand which ABLE program might be best for them, and how to prepare to open an ABLE account. The webinar features perspectives of potential ABLE beneficiaries and family members. 
View the archived webinar and materials

Neurologists Endorse Role in Supporting Transition to Adult Health Care
The Child Neurology Foundation has issued a consensus statement indicating that neurologists should take a leadership role in planning youth and young adult patients’ transitions to adult care, and in helping establish care coordination among health care, educational, vocational and community service providers. The statement outlines eight principles that neurologists should consider.   
Read the statement

External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services.  For more information about Children with Special Health Care Needs, Title V Maternal and Child Health, or information regarding maternal and child health in Texas, please email or call (512) 776-7373.

Last updated April 19, 2018