Improving Systems of Care for CSHCN David Alexander, M.D. President & CEO Lucile Packard Foundation for Lucile Packard Foundation for Children’s Health
DEFINITION OF CSHCN DEFINITION OF CSHCN “…those who have or are at increased risk for chronic physical, developmental, behavioral, or p y , p , , emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
HOW MANY CSHCN IN CALIFORNIA? HOW MANY CSHCN IN CALIFORNIA? • Approximately 15% of all children age 0-17 — about 1 in 6 • Equals an estimated 1.4 million CSHCN living in q g California
All of the CSHCN living in California would fill 25 454 school buses and stretch 174 miles 25,454 school buses and stretch 174 miles How far would the buses span if they p y were filled with subgroups of California CSHCN? ● Publicly Insured: 49 miles =174 miles ● Privately Insured: 111 miles ● Uninsured: 14 miles (CA 40 th ) ● White: 83 miles ● Non-white: 91 miles
Hi hli ht Highlights of CSHCN in California f CSHCN i C lif i How far would the buses span if they p y were filled with subgroups of California CSHCN? ● Asthma: 73 miles A h 73 il =174 miles ● 2+ of 16 more common conditions: 103 miles 103 miles ● CSHCN who are also overweight or obese: 68 miles ● Complex needs:73 miles ● Functional difficulties: 152
National Comparison of States California ranks in the bottom third of all states on all 11 quality of care measures in the national survey of 11 quality of care measures in the national survey of CSCHN Ranked 46 th in nation for inadequate insurance • Ranked 48 th in nation for care coordination • Ranked 45 th in nation for developmental screening • Ranked 45 th in nation for transition to adulthood • Ranked 43 rd in receiving needed mental health services • 2007 NSCSHCN
National Comparison California rated worst state in nation for: – Having at least one preventive care/well visit – Meeting baseline criteria for having a Medical Home – Receiving family-centered care – Usual source of sick and well care – Above average stress among parents of CSHCN Above average stress among parents of CSHCN – Quality Index (18% met minimal index for adequate insurance, preventive care visit and medical home) , p ) 2007 NSCSHCN
Existing System for Children Patient with Special Health Care Needs in Patient & & Family California Family y M E D I C A L H O M E U N D E R F U N D E D I N C O N S I S T E N T A C C E S S & Q U A L I T Y Service Providers Variable Access to Care Depending On: • Th The Condition You Have C diti Y H P R I N C I P L E S & S T A N D A R D S • Where You Live F R A G M E N T A T I O N • How Much $$ You Have Subspecialty ‐ Driven Care; Treatment ‐ driven, Not proactive • The Insurance You Have Medical Care and Family Support Services • Your Age Family y Variable Quality Standards Variable Quality Standards Children’s Children s Community Community Parent Parent Regional Regional Specialty Specialty Pharmacy PCP Resource Hospital Minimal Outcome Measures Hospital Center Center Physician Center Variable Coordination of Care Variable Coordination of Care Additional Variables : Conditions within Family • Culture • Pro ‐ activeness of Family Payors Payors Varying Coverage F R A G M E N T A T I O N O F C O V E R A G E Depending On: • The Condition You Have • Where You Live • How Much $$ You Have How Much $$ You Have • The Insurance You Have • Your Age State Cal Federal Federal Federal Federal Regional Healthy State Private Children’s Medicare: Medicaid Title V SCHIP Centers Services Families MediCal Insurance (End Stage Renal Disease) Inadequate reimbursement (CCS) (SCHIP) Delivery system for children is y y underfunded; 58 Leads to shortage of providers State Counties Fragmented Payment System: Each pays according to different guidelines. Eligible conditions overlap among some payors.
An Ideal System for Children with Patient Special Health Care Needs in & California Care Coordination Family y Through an Effective Through an Effective Medical Home E F F E C T I V E, F U N D E D M E D I C A L H O M E Service Consistent Guiding Principles Consistent Guiding Principles Providers & Quality Standards Consistent Guiding Principles, Quality Standards, & Qualifying bility Conditions Coordinated Care Medical Care and Family Support Services Medical Care and Family Support Services Accountab Evidence ‐ based Care Defined Outcome Measures Consistent Qualifying Conditions Unified Access Rules: Yes or No Payors Qualifying Conditions Are Consistent State ‐ Wide C Reimbursement is Adequate Unified Payment System: Each Pays its Share Private Federal Federal State State Insurance
Existing System Ideal System Patient Patient & & Family Family M E D I C A L H O M E U N D E R F U N D E D E F F E C T I V E, F U N D E D M E D I C A L H O M E I N C O N S I S T E N T A C C E S S & Q U A L I T Y Consistent Guiding Principles P R I N C I P L E S & S T A N D A R D S & Quality Standards & Q lit St d d F R A G M E N T A T I O N Medical Care and Family Support Services Medical Care and Family Support Services Qualifying Conditions F R A G M E N T A T I O N O F C O V E R A G E Unified Access Rules: Yes or No Unified Payment System: Each Pays its Share Unified Payment System: Each Pays its Share Cal Cal State State State State Private P i t F d Federal l Federal d l Federal d l R Regional i l Federal (CCS) SCHIP MediCal Medicaid Centers Insurance Title V SCHIP Medicare Private Federal State Insurance 58 State Counties
Foundation’s Grantmaking Focus Foundation s Grantmaking Focus • Care Coordination C C di ti • Family-Centered Care • Finance Reform • Supporting Self-Management Supporting Self Management • Disparities in Access and Quality Quality 13
Grantmaking Strategies: Linking Advocacy and Research to Improve Systems of Care for CSHCN Strategy Grants Children with Special Health Care Needs: Children with Special Health Care Needs: Baseline : Baseline : A Profile of Key Issues and a Call to Action Describing the Challenges Vision : Vision : Describing How Things Should Be Discharge Planning Standards Action : Care Coordination Mini-Grants Approaches and Activities for Improvement Support & Sustain : California Advocacy Network for Children with Special Health Care Needs p Policy Options
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