State Public Health Autism Resource Center 

Archived Webinar: Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families: Lessons Learned from Combating Autism Act Grantees
August 22, 2012
2:00-3:30p EDT

The full webinar recording can be accessed here. For audio only, click here.

 Participation Guide

This webinar is the fourth of the Combating Autism Act Initiative (CAAI) webinar series, Research to Practice, and will highlight lessons learned from combating autism act grantees regarding building systems of care that meet the needs of children & youth with ASD/DD & their families. Participants are encouraged to ask questions during the webinar.
The CAAI webinar series is designed to showcase successes of CAAI grantees, connect attendees to CAAI grantees, and highlight CAAI activities. The series runs from April through August 2012 and will replace the annual face-to-face CAAI conference.

Panelists
Michael Lu, MD, MS, MPH
Associate Administrator of Maternal and Child Health, Health Resources and Services Administration
Topic: Introduction

Nancy Cronin, MA
ASD Systems Change Initiative Coordinator & State Autism Implementation Grant Manager, Maine Developmental Disabilities Council
Topic: Making Change in Shifting Sand: Implementing Universal Autism Screening in Maine

Donna Murray, PhD, CCC-SLP
Director of Clinical Services for the Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center
Topic: Improving Access to Autism Specific Services Using Quality Improvement Science

Patricia Osbourn, MA, SLP, CCC, CEC
Deputy Director of the Center for Development and Disability at the University of New Mexico
Topic: Supporting Families and Communities: Systems Change Through the Development of an Autism Oversight Team

Archived Webinar: Improving Family Involvement for Children & Youth with Autism Spectrum Disorders through the Combating Autism Act Initiative

Speakers & Moderators:

• Fran Goldfarb, MA, MCHES, Family Support Director, University of Southern California, Children’s Hospital Los Angeles – Parent of a Young Adult on the Autism Spectrum
• Amy Hess, BA, MA Certificate, Autism Treatment Network Site Coordinator, Nationwide Children’s Hospital  – Parent of a Child with Autism
• Timothy Markle, MA, CYSHCN Outreach Specialist, Wisconsin Department of Health Services

The full webinar recording can be accessed here. For audio only, click here.

Participation Guide

This webinar was the second in the CAAI webinar series, Research to Practice, which showcases successes of CAAI grantees, connects attendees to CAAI grantees, and highlights CAAI activities. Webinars are targeted to CAAI grantees, but open to all. To access a recording of the first webinar, Results from a Study of the Combating Autism Act Initiative: HRSA's Efforts to Improve ASD Service Delivery Through Research, Training, and State Implementation Grants, click here.

New AMCHP Issue Brief on the Affordable Care Act and Children and Youth with Autism Spectrum Disorders

Children and youth with autism spectrum disorders require an array of health services that are often inadequately covered under the current health system. The Affordable Care Act (ACA) is designed to boost coverage, improve benefits and provide new insurance protections for all Americans. The AMCHP Issue Brief, The Affordable Care Act and Children and Youth with Autism Spectrum Disorder and Other Developmental Disabilities, explores the elements of the ACA that impact children and youth with autism spectrum disorders.

New AMCHP Issue Brief on Autism Spectrum Disorders

The AMCHP Issue Brief, Environmental Scan: How State Title V Programs are Responding to Autism Spectrum Disorder and Other Developmental Disabilities, has been released. In an effort to document the level of activity among states in the area of ASD/DD, AMCHP conducted an environmental scan of state Title V program ASD/DD activities. This environmental scan provides insights into approaches that state Title V programs are taking to address the growing incidence of ASD/DD and catalogues ASD/DD activities that fit within the framework of the Maternal and Child Health Bureau (MCHB) critical indicators for children and youth with special health care needs. Information was obtained through a text search for “autism” using information from the 2010 Maternal and Child Health Block Grant State Narratives contained in the Title V Information System (TVIS) online database.

Booklet on Dental Care and Autism

 Healthy Smiles for Autism provides oral hygiene tips for children with autism spectrum disorder from the National Museum of Dentistry.

The USC UCEDD completed an extensive review process in developing these translations, consulting both parents and health care professionals. The Autism Fact Sheet provides a one-page tool for clinicians to share with families, to raise awareness about developmental delay, which may be related to autism or other developmental disabilities. The fact sheet encourages parents who have concerns about their child’s development to speak with their doctor.

The Autism Fact Sheet is available in Arabic, Armenian, Farsi, French, German, Italian, Japanese, Korean, Mandarin, Tagalog, Thai and Vietnamese here. English and Spanish versions of the fact sheet are available here.

Free Online Parent Training Module from the UC Davis MIND Institute
ADEPT - Autism Distance Education Parent Training: Strategies for Teaching Functional Skills

• Learn ABA techniques to increase your parenting skills
• Learn how to teach self-help skills and manage certain problem behaviors
• Increase your teaching success and your child’s learning success

Autism Speaks: Family Services Transition Tool Kit 

Anyone can download the Transition Tool Kit for free! You can also view a PDF of each section by clicking on the links below. Click here to download the entire kit.

Transition Tool Kit Sections

• Introduction
• Self-Advocacy
• Why Do We Need A Transition Plan?
• Community Living
• Employment and Other Options
• Post-Secondary Educational Opportunities
• Housing
• Legal Matters to Consider
• Health
• Internet & Technology
• Getting Organized
• Conclusion
• Resources

Request A Kit

Families of adolescents and young adults with autism between the ages of 14 and 22 may request a complimentary hard copy of the Transition Tool Kit by filling out the Transition Tool Kit order form or calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator. 

State Spotlight: Rhode Island

Rhode Island is the smallest and most densely populated state of the demonstration grants. RI offers many options to children, youth and their families in the diagnosis and treatment of an ASD, however, these options are often varied in terms of evidence, fidelity, availability and appropriateness. RI’s best practice initiative addresses the following:

1. Ensuring that families are aware of and advocate for best practice standards in the Intervention / Treatment of children and youth with an ASD, including Early Intervention, Special Education and Home – Community Based Services. RI’s Resource Guide for Families of Children with Autism Spectrum Disorders, currently in its second edition and available in English and Spanish, provides families and professionals with comprehensive information on signs and symptoms of ASD, diagnosis and adjustment, financing care, treatment and interventions, educational services, community resources and supports, and transitional services. Newly diagnosed families are afforded parent mentorship, support groups, informational/training workshops, in-home training, electronic newsletters, playgroups and a resource library. 
2. Increasing the use of and availability of evidence based practices in educating and treating children and youth with an ASD or other DD. The Autism Project in collaboration with Johnson & Wales University in Providence, RI has developed six graduate level courses for teacher and other educational personnel who are interested in developing specialized knowledge and skills in evidence-based practices for students with ASD/DD. The courses combine classroom time with field-based guided experience and include concrete and adaptive materials. The courses will begin in the summer of 2011. 
3. Assist in the transition of youth with ASD or other DD from pediatric to adult healthcare, employment, higher education, and other support services. RI embraces a positive youth development approach to adolescent transition that provides youth with opportunities to identify goals, find their voice and affect their transition process in meaningful ways. The RI Department of Health has developed a variety of resources for youth, their families and providers to fully engage in the transition process; and collaborates with schools and community-based organizations on using the materials in individual student transition planning, To access these resources, see:  Adolescent Transition for People with Special Health Care Needs: Rhode Island Department of Health

Expert's Corner  

Roles for Families in Building Systems of Care for Children and Youth with ASD
By Michelle Jarvis, Program Manager, Family Involvement
AMCHP [bio]

Personal experiences can often act as a catalyst for advocacy and systems change. These experiences, especially when they affect our families and loved ones, are powerful motivators, and have certainly shaped my journey to AMCHP and my current role as a program manager for family involvement. As a parent of a child with special needs, specifically one with an autism spectrum disorder (ASD), I have encountered many road blocks to secure necessary and appropriate services. One of those road blocks was getting my insurance provider to cover services such as occupational and speech therapy.

As a parent trying to access these therapies for my own child, I learned quite a bit about how critical these therapies are to kids with ASD and what a difference early access to these services can make in a child’s development. In my professional roles, I also learned how common it is for insurance companies to deny coverage, even when it is provided for other diagnosis, especially by using the term ‘habilitative’. While I was chair of the New Hampshire Council on ASD, I worked with other state stakeholders including families, providers, organizations, lobbyists and state representatives to pass a law requiring fair and equal insurance coverage for individuals with ASD in New Hampshire.

This experience, and many others, taught me how families have a unique opportunity and responsibility to be involved in advocating for a system of care that works for all children and families. I also learned that families may need guidance and support to make sure their voices are heard effectively. Family representatives bring the view of individual families to the table, work with their communities to assist families, and are representatives of families within their state and territory. They are in a unique place to collaborate on state, territorial and federal issues to assist families. 

AMCHP recognizes the vital role of families and their need to be supported as leaders, and offers a number of resources for families and states to strengthen family leadership including the following: the Family Scholars Programs (FSP) (click here); the Family and Youth Leadership Committee (FYLC) and other AMCHP committees (click here); and the AMCHP Family Delegates (click here). In addition, AMCHP has published an issue brief on Family Participation (click here). For more information about these programs and family involvement at AMCHP, please contact me, Michelle Jarvis at AMCHP (mjarvis@amchp.org, (202) 775-1472)