SPHARC is a comprehensive web-based resource center intended to provide ongoing technical assistance and facilitate cross-state learning to increase the capacity of states, particularly Title V programs, in developing and implementing systems of care for children and youth with autism spectrum disorders and other developmental disabilities (ASD/DD) through resource development, technical assistance and peer learning. SPHARC is designed to establish an ongoing peer-to-peer network, and exchange of resources and information.
REQUEST FOR APPLICATIONS FOR 2014-2016 ACT EARLY STATE SYSTEMS GRANTS
Application Deadline: Friday, January 10, 2014
Through funding from the Centers for Disease Control and Prevention (CDC) National Center for Birth Defects and Developmental Disabilities (NCBDDD), AMCHP will facilitate a competitive award process for up to seven states to receive up to $20,000 over two years to state teams, led by either the Title V program or a member of the Association of University Centers on Disabilities (AUCD) network, to support the collaboration of Act Early Regional Summit Project teams and to further activities initiated by state teams during the Summits. These funds are designed to be a catalyst for collaboration with stakeholders, as well as for implementing specific activities outlined in Act Early State Plans. AMCHP will provide ongoing technical assistance, disseminate resource materials and link grantees to other states and experts in autism spectrum disorders (ASD).
To apply, click here to download the full RFA.
For additional questions, contact Michelle Jarvis, Program Manager, Family Involvement, at firstname.lastname@example.org or (202) 775-1472, or Alma Reyes, Program Associate, Child & Adolescent Health, at email@example.com or (202) 775-1474.
Welcome New Grantees!
We would like to welcome continuing grantees to a new project year and extend a welcome to new State Autism Planning and Implementation Grantees:
- Arkansas – University of Arkansas System
- Massachusetts - University of Massachusetts
- New Hampshire - NH Department of Health and Human Services
- Texas – University of Texas Health Science Center at Houston
- Maryland – Parent’s Place of Maryland
- North Carolina – University of North Carolina at Chapel Hill
- Oregon – Oregon Health & Science University
- Virginia – Virginia Commonwealth University
A SPHARC Welcome and Kick-Off call was held on September 18, 2013. Materials from the call are available at the following links:
Social Media 101 Webinar to SPHARC Grantees
Date: March 27, 2013
AMCHP hosted a webinar on Social Media 101. Speakers included:
- Julio Arguello, Jr., Online Media & Information Technology Manager, AMCHP -- [Presentation Slides]
- Randi Clites, Advocacy/Program Manager, Northern Ohio Hemophilia Foundation -- [Presentation Slides]
- Tierney Giannotti, University of Connecticut Center for Excellence in Developmental Disabilities, Research, Education and Service; and
Ann Gionet, Connecticut Department of Public Health -- [Presentation Slides]
The purpose of this webinar was to help State Public Health Autism Resource Center (SPHARC) grantees understand the basics of Social Media and provide a step by step demonstration on how to set up a Facebook and Twitter profile. The webinar also featured examples of how SPHARC grantees are using Facebook.
The full webinar recording can be accessed here.
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
The full webinar recording can be accessed here. For audio only, click here.
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.
Michael Lu, MD, MS, MPH
Associate Administrator of Maternal and Child Health, Health Resources and Services Administration
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.
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.
CDC Learn the Signs. Act Early. Autism Fact Sheet Translated Into Multiple Languages
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
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:
- 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.
- 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.
- 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
Roles for Families in Building Systems of Care for Children and Youth with ASD
By Michelle Jarvis, Program Manager, Family Involvement
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 (firstname.lastname@example.org, (202) 775-1472)