National MEDICAL HOME Autism Initiative. Waisman Center University Center for Excellence in...

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, 2007Bonnie 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:ResearchSurveillance 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 2007 -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) 301-443-2350 [email protected]

The Physician Perspective Autism/ASD Service Guidelines



November 13, 2007Linda Tuchman-Ginsberg, PhD.

Waisman Center University Center for Excellence in Developmental

Disabilities


Physician Perspectives

How might the Autism Medical Home Autism Medical Home Service System GuidelinesService 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 peopleReinforce work toward standardsReflect 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 ResourcesSuggest 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, e-mail, FAX

Contact Information Co Principal Investigator: Linda Tuchman-Ginsberg

Phone: 608-263-6467 Fax: 608-265-3441

Email: [email protected]

Address: 1500 Highland Avenue Room S101D Madison, Wisconsin 53705

Family PerspectivesAutism/ASD Service Guidelines



November 13, 2007Grace 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: 410-678-9100 Fax: 410-768-0830


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


November 13, 2007Christine M. Breunig, MS. Ed Admin

National Medical Home Autism Initiative

Waisman Center University Center for Excellence in Developmental Disabilities


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 PRACTICESubmit Abstracts to: Christine Breunig

[email protected] 608-890-0145

Information for contact person: Name: Title: Organization: Address: Work Phone: Cell: E-mail:

Promising Practice: inclusion as a promising practice on the ASD Service System Guideline website.

http://www.waisman.wisc.edu/nmhai/ASDguidelines/html 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 ForumTitle 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: 608-890-0145 Fax: 608-265-3441


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, EarlyIntervention 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

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