national MEDICAL HOME Autism Initiative

Waisman Center University Center for Excellence in Developmental Disabilities University of Wisconsin - Madison Cooperative Agreement with Division of Services for Children and Youth with Special Health Care Needs (CYSHCN) Maternal and Child Health Bureau (MCHB) Health Resources and Services Administration (HRSA) US Dept of Health and Human Services (HHS)

The priority for this national project is to develop strategies to improve the capacity of the medical home and early intervention community to identify, appropriately serve, and integrate children with autism into their communities. This will be accomplished through technical assistance, resource activities and collaboration with health care, educational and other community partners.

This Session Will Highlight: 1) The process that guided the development of a cross- system perspective for serving children with Autism Spectrum Disorders. 2) “Promising practices” for the improvement of early identification, intervention and other services for children and youth with ASD. 3) Strategies to utilize the guidelines to improve primary care practices in the context of community partnerships. 4) Your ideas regarding use of guidelines to promote collaboration between systems and suggestions of promising practices for serving children with ASD and their families.

U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB) Autism/ASD Service Guidelines and Promising Practices for Medical Home Primary Care Practices and Their Community Partners Association of University Centers on Disabilities (AUCD) Annual Meeting November 13, 2007 Bonnie Strickland, Ph.D.

Increased Prevalence In the past decade, the number of individuals with Autism Spectrum Disorder (ASD) has risen dramatically (CDC, 2007). ASD affects more children than Down Syndrome, childhood cancer, type 1 diabetes, and cystic fibrosis, This rapid growth is an urgent concern for affected families; ASD services providers; and Federal, State, and local service agencies.

Legislation The Combating Autism Act of 2006 provides for expansion of:  Research  Surveillance and Epidemiology  Interdisciplinary Approach to Education, Early Detection, and Intervention

Legislation (2)  Interdisciplinary Approach to Education, Early Detection, and Intervention Increase awareness Reduce barriers to screening and diagnosis Promote evidence-based interventions Professional Training

Legislation (3)  Focus on Multi-System Approach to Implementation: Public awareness through Head Start, Early Start, Healthy Start, Child Care, EPSDT,SCHIP, Title V, IDEA, WIC, and others. Designation of Lead Agency in the State to coordinate activities in the State at the State level.

Legislation (4) Required Sharing of tools used by Federal agencies and programs including Developmental Disabilities, Part C of IDEA, and Title V CSHCN programs,

Interagency Autism Coordinating Committee (IACC) Services Subcommittee Background The Services Subcommittee was part of the original Interagency Autism Coordinating Committee (IACC) mandated by the Child Health Act to coordinate autism research and other efforts within the Department of Health and Human Services (DHHS). Focus of the Services Subcommittee: access to comprehensive services, Building systems capacity to provide appropriate, inclusive services. Services Subcommittee supported the Autism Spectrum Disorder (ASD) Expert Working Group in the development of the Autism Services Roadmap.

Services Paradigm

ASD Services Guidelines Developed by the Autism Guidelines Working Group convened by the National Medical Home Autism Initiative (NMHAI) to:  Provide a tool for strengthening the system of services for children, youth, and adults with autism and their families,  Identify the roles of families, professionals, community organizations, and others as critical partners,  And …

ASD Services Guidelines (2)  Compliment the recently released clinical reports from the American Academy of Pediatrics: “Identification and evaluation of Children with Autism Spectrum Disorders” “Management of Children with Autism Spectrum Disorders”

ASD Services Guidelines (3) March Family/professional meeting to review and evaluate draft guidelines:  Autism is a chronic medical condition which IS treatable with medically necessary interventions – physical, behavioral, and therapeutic  There is a crisis in ASD not just because prevalence has increased, but because our service system lacks adequately trained professionals, the service system is fragmented, and funding is inadequate.

ASD Service Guidelines (4)  Providers and communities need to be more accepting and competent in integrating individuals with ASD into accessible service systems and into society,  Failure to plan for transition to adulthood, and the lack of adult services will be a significant concern to families and to the nation,

ASD Service Guidelines (5)  Medical home models appropriate for individuals with ASD must be done within the broader context of systems for all individuals with special needs, and  Common ASD definitions for service eligibility and reimbursement are needed across multiple systems.

Contact Bonnie Strickland, Ph.D. Director Division of Services for Children with Special Health Care Needs (DSCSHN)

The Physician Perspective Autism/ASD Service Guidelines Medical Home Primary Care Practices and Their Community Partners Association of University Centers on Disabilities (AUCD) Annual Meeting November 13, 2007 Linda Tuchman-Ginsberg, PhD. Waisman Center University Center for Excellence in Developmental Disabilities University of Wisconsin - Madison

Physician Perspectives Autism Medical Home Service System Guidelines How might the Autism Medical Home Service System Guidelines be useful to you in your primary care practice?  “People want to do their part; they need a system to do it within”. (Wm. Schwab, MD)

Quality Improvement The Guidelines and Medical Home Concepts..  Provide a template for ASD as well as care for all people  Reinforce work toward standards  Reflect consumer/family driven needs

Partnerships The Guidelines and Medical Home Concepts…  Underscore the importance of partnerships with families/patients Active process Ask families/patients…….  What do you need?  What do we each bring to the partnership?

Developmental Screening The Guidelines and Medical Home Concepts…  Provide an opportunity to approach the well child visit in partnership with families.  Reinforce the AAP Policy on Developmental Screening/Surveillance July 2006, all children November 2007, autism

Care Coordination The Guidelines and Medical Home Concepts…  Help to create a comprehensive view of the child in the context of a family & community Family Support Therapies Education Other Medical Concerns  Diet/Nutrition  Sleep

Care Coordination The Guidelines and Medical Home Concepts..  Reinforce the importance of having knowledge of Community Resources  Suggest that relationships build confidence in community referrals

Funding The Guidelines and Medical Home Concepts…  Recognize Time for Non-Billable Services Developmental Screening Care Coordination/  Collaboration with Agencies  Recognize Time for Families & Community Partners Face-to-Face Communication Paperwork Phone calls, , FAX

Contact Information Co Principal Investigator: Linda Tuchman-Ginsberg Phone: Fax: Address: 1500 Highland Avenue Room S101D Madison, Wisconsin 53705

Family Perspectives Autism/ASD Service Guidelines Medical Home Primary Care Practices and Their Community Partners Association of University Centers on Disabilities (AUCD) Annual Meeting November 13, 2007 Grace Pushparany Williams

Family Perspectives Autism is a chronic medical condition ASD is treatable with early identification and intervention The service delivery system is not coordinated, inadequate and lack quality.

Family Perspectives Children, youth, adults and families face unique challenges. Transition to adulthood for children with ASD is a great concern

Family Perspectives The providers and communities need to be accepting and competent in integrating. Implementation of Expanded Medical Home for ASD Common ASD definitions for service delivery Family perspective is the key.

Contact Information Grace Pushparany Williams Phone: Fax: Address: 801 Cromwell Park Drive, Suite 103 Glen Burnie, MD 21061

Autism/ASD Service Guidelines and Promising Practices for Medical Home Primary Care Practices and Their Community Partners Association of University Centers on Disabilities (AUCD) Annual Meeting November 13, 2007 Christine M. Breunig, MS. Ed Admin National Medical Home Autism Initiative Waisman Center University Center for Excellence in Developmental Disabilities University of Wisconsin - Madison

Purpose of this Report Describes current prevalence and understanding of autism spectrum disorders as reported by national agencies and organizations. Summarizes challenges that families and professionals face Describes the principles of Medical Home for Children and Youth with Special Health Care Needs Describes a conceptual framework within which key partners can perform key functions across service activity areas Facilitates distribution of the ASD Service Guidelines for Medical Home Practices

Prevalence and Current Understanding of ASD The Centers for Disease Control and Prevention (CDC) report issued on February 9, 2007 indicates that prevalence rates of Autism Spectrum Disorders (ASD) in children are 5.2 to 7.6 per 1,000, or one of every 152 children. There is now an understanding that ASD is a neuro-developmental medical condition associated with unique abnormalities in brain development, rather than a mental health or behavioral disorder.

Challenges Needing to be Addressed #1: Identification of children with autism: #2: Gaining entry into effective intervention programs: #3: Working from a family centered perspective: #4: Coordinating the organization and delivery of care:

Medical Home Primary Care Practice Medical Home that is accessible, family-centered, compassionate, comprehensive, continuous, coordinated, and culturally effective MH-PCP routinely monitors development and screens to identify children with developmental delays and disabilities including ASD Ongoing and effective communication with the children, youth, and families under their care, and they learn to partner with the families to address needs A proactive team approach is used to manage ASD as a chronic condition within the Medical Home.

Coordination With Service Systems Through the Medical Home The Medical Home helps families connect with other community-based organizations and provides support and guidance in finding needed resources, including assisting families with the considerations about reimbursement options for services Requires coordination of the more complex services and systems such as health and education, as well as co- management with specialists and assistance with transitions, especially to adulthood

IACC Recommendation for Service Guidelines Health Resources and Services Administration (HRSA) accepted the task of lead agency for the development of the development of such professional guidelines as requested by IACC. Developed by an ASD Service Guideline Workgroup (ASG Workgroup) convened by MCHB and facilitated by the National Medical Home Autism Initiative. Reviewed by a Family Forum: Family Perspectives on Autism Service Guidelines for the Medical Home, which included families of children and youth with ASD, state autism system representatives and representatives from 5 National Centers.

Conceptual Framework for Autism Services within the Medical Home

Key Partners Consumers: Parents / Families, children and youth with ASD Professional / Training Organizations: Residency Programs, Accreditation Organizations, Professional Organizations (such as AAP, AFP) and other Training Programs Education and Community Agencies: Early Intervention Programs, Local Educational Systems, Public Health, social Services, and other community providers Government and Finance Agencies: Government service providers such as Medicaid, Insurance Providers and other health care payers Other Healthcare Practices: primary care pediatricians and providers, family physicians and providers, specialists, and other health care providers

Key Service Functions Organizational Structure of the Medical Home Developmental Screening, Surveillance and Referral Ongoing Medical Care Behavioral & Mental Health Services Alternative Therapies Education and Community Services Transition to Adult Services

Guideline Examples

Promising Practice Examples

Resource Examples

ABSTRACT for SUBMISSION OF PROMISING PRACTICE Submit Abstracts to: Christine Breunig Information for contact person:  Name:  Title:  Organization:  Address:  Work Phone:  Cell:  Promising Practice:  inclusion as a promising practice on the ASD Service System Guideline website.  can serve as a resource for others so that system change efforts can be expedited and completed in an efficient manner.  Submitted in any service function of the guidelines Name of Promising Practice:

ABSTRACT for SUBMISSION OF PROMISING PRACTICE continued Description:  What was the purpose and objective and who are the key parties?  When was the practice implemented and for how long?  What was the geographic service area? Methods/Approach:  What was done to get results? Source of Funding:  Where did the funds come from?  Is the funding ongoing?  How much funding was provided? Evidence of Results:  Provide information on impact or evaluation results. References– web site or other citations

Medical Home Autism Leadership Forum Title V (CYSHCN) Region 5 December 6 and 7, 2007 in Elk Grove Illinois Getting the House in Order: Creating Medical Home Solutions for Individuals with Autism

Q and A / DISCUSSION  Guideline Development  Availability of Guidelines  Strategies for Use of Guidelines  Promising Practice Examples  Promising Practice Abstract  Approaches for System discussion and development  Other

Contact Information Project Coordinator: Christine Breunig Phone: Fax: Address: 1500 Highland Avenue Room A146 Madison, Wisconsin 53705

national MEDICAL HOME Autism Initiative Principal Investigator: William Schwab, MD – Professor, Dept. of Family Medicine, UW-Madison Co Investigator: Daniel Bier, MPA, MSW – Associate Director, Waisman Center, UCEDD, UW-Madison Co Investigator Linda Tuchman-Ginsberg, PhD – Director, Early Intervention Program, Waisman Center, UW-Madison Pediatric Consultant: Mark Rosenberg, MD – Children’s Health Care Associates, Chicago, Illinois MCHB Project Officer:Monique Fountain, MD, MPH, MBA – Director, Medical Home Initiative, Dept. Health and Human Services, Health Resource & Service Administration, Maternal Child Health Bureau Project Coordinator:Christine M. Breunig, MS – Senior Outreach Specialist, Waisman Center, UCEDD, UW-Madison

The Waisman Center is dedicated to the advancement of knowledge about human development, developmental disabilities and neurodegenerative diseases. It is one of 9 national centers that encompass both a Mental Retardation / Developmental Disabilities Research Center designated by the National Institute of Child Health and Human Development, and a University Center for Excellence in Developmental Disabilities designated by the Administration on Developmental Disabilities (UCEDD). The work reported in this presentation was supported through a Cooperative Agreement ( U43MC02614) from the Health Resources and Services Administration, Maternal Child Health Bureau to the Waisman Center, University of Wisconsin - Madison