1. State and Regional Approaches to Improving Access to Services for Children and Youths with Epilepsy Technical Assistance Conference Call Sadie Silcott, MBA, MPH Project Officer Department of Health and Human Services Health Resources and Services Administration Review of FY 2013 Funding Opportunity Announcement

2. Outline  Maternal and Child Health Bureau  Epilepsy Program Purpose  Institute of Medicine Report  Methodology to Create a Community Based System of Care  Evaluation  Expected Outcomes and Program Objectives  Eligibility Criteria  Award Information  Review Criteria

3. Maternal and Child Health Bureau  Mission: provide national leadership to improve the physical and mental health, safety, and well being of the maternal and child health  MCHB’s Priorities: addressing health disparities, health equity, and promotion of the MCH population  Division of Services for Children with Special Health Needs (DSCHN) - Children and youth with special health care needs

4. Maternal and Child Health Bureau contd. Community Based System of Care: - Family/Professional Partnerships - Access to medical homes - Adequate Insurance and Financing - Early and Continuous Screening - Integrated Community Based Services - Transition to Adulthood

5. Epilepsy Program Purpose  Authorizing Legislation: Section 501 (a) (2) of the Social Security Act  Project Access: national initiative to increase awareness and improve access - first cohort of grantees began in 2003 - currently in the last year of the third cohort - goals include promoting early recognition of epilepsy, and timely diagnosis

6. Epilepsy Program Purpose contd.  Program is a resource to improve access to health and other services for CYE in rural and underserved areas - Collaborative partnerships - Quality Improvement Methodologies - State Maternal Child and Child Health (Title V) Program

7. Institute of Medicine (IOM) 2012 Report  Epilepsy across the Spectrum: Promoting Health and Understanding Recommendations: 1. Validate and Implement Standard Definitions and Criteria for Epilepsy Case for Ascertainment, Health Care and Community Services Use and Costs, and Quality-of-Life Measurement 2. Continue and expand collaborative Surveillance and Data Collection Efforts 3. Develop and Evaluate Prevention Efforts for Epilepsy and Its Consequences

8. Institute of Medicine (IOM) 2012 Report contd.  Epilepsy across the Spectrum: Promoting Health and Understanding contd. Recommendations: 4. Improve the Early Identification of Epilepsy and Its Comorbid Health Conditions 5. Develop and Implement a National Quality Measurement and Improvement Strategy for Epilepsy Care 6. Establish Accreditation of Epilepsy Centers and an Epilepsy Care Network 7. Improve Health Professional Education About the Epilepsies

9. Methodology to Create a Community –Based System of Care  Implementation of quality improvement methods such as advanced technology (i.e. telehealth/telemedicine)  Public health and primary care collaboration  Promoting and fostering the linkage between CYE and pertinent community based organization  Supporting and advocating for the approaches regarding self management of care and decision making  Improving the ability of CYE to access comprehensive care

10. Evaluation  20% of annual budget must be allocated for evaluation and quality improvement purposes  MCHB’s Performance Measures  Cross Evaluation Team  Identification and reporting of common metrics and measures for the program

11. Expected Outcomes and Program Objectives  Improved coordination of care  Increased number of CYE and families reporting having quality access to care  Increased number of CYE with medical homes  Increased use of advanced technology  Increased self management of care among CYE

12. Eligibility Criteria  Any public or private entity including an Indian tribe or tribal organization - must have a state or multi-state regional approach - address the maldistribution of resources and services for CYE

13. Award Information  A ceiling amount of up to $390,536  Period of support is three (3) years  Funding beyond the first year is dependent: - Availability of appropriated funds - Satisfactory performance - Interest of government

14. Review Criteria Need Response Evaluative Measures Impact Resources and Capabilities Support Requested

15. Review Criteria  Need (10 points) - comprehensive understanding of the problem supported by data  Response (45 points) - documented partnerships with pertinent stakeholders - describe measurable quality improvement efforts - communication with the Coordinating Center regarding promising practices and tools

16. Review Criteria contd.  Evaluative Measures (15 points) - demonstrate measurable progress toward achieving goals/objectives - status reports on State Title V programs integration of epilepsy into policies - describe the methodology to collect, analyze, and track data  Impact (10 points) - replicable national model with quantifiable outcomes - discuss a feasible sustainability plan

17. Review Criteria contd.  Resources and Capabilities (15 points) - institutional resources and activities - demonstrate experience working with various stakeholders  Support Requested (5 points) - budget must reflect adequate support for organizational processes - a minimum of 20% of the annual budget must be geared towards evaluation and quality improvement efforts