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IMPROVING THE SYSTEM OF SERVICES FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS. REGION VIII. LEARNING OBJECTIVES. To understand the population of children/youth with special health care needs To understand the system of services that families need

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learning objectives
LEARNING OBJECTIVES
  • To understand the population of children/youth with special health care needs
  • To understand the system of services that families need
  • Assess Title V’s role in promoting/facilitating this system
  • How have other states worked to improve the system
  • Resources to support system improvement
why does the definition matter
WHY DOES THE DEFINITION MATTER?
  • Estimate resources and personnel requirements
  • Define population for needs assessment
  • Identify research needs
  • Evaluate services
  • Define a social agenda
different people have different ways to define these children and youth
Different people have different ways to define these children and youth

Diagnostic : Presence of a specific disease or condition ( e.g. at birth such as spina bifida or acquired like cancer)

Disability of Functional Impairment: a condition that restricts every day activities (e.g. deafness or wheelchair bound)

Developmental: Delays in certain childhood developmental milestones (e.g. learning disabilities)

Cost: Medical care costs that exceed a certain amount (in a health plan)

Chronic Illness: A condition that lasts at least 12 months

Eligibility : For specific programs like foster care, supplemental security income (SSI)

legislative definitions
LEGISLATIVE DEFINITIONS

AMERICANS FOR DISABILITIES ACT (ADA): physical or mental impairment that substantially limits 1 or more life activities

SUPPLEMENTAL SECURITY INCOME (SSI): medically determinable physical or mental impairment with functional limitations expected to last no less than 12 months

INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA) : Categories of disabilities (e.g. autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment) 

mchb definition
MCHB DEFINITION

Developed by group of experts

Endorsed by American Academy of Pediatrics

Children who have, or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and require health & related services beyond required by children

what are the programs that serve cyshcn
WHAT ARE THE PROGRAMS THAT SERVE CYSHCN?
  • Federal vs state vs local
  • Education (especially special ed)
  • Social services (e.g. foster care)
  • Recreation
  • Health care
    • Insurance plans
  • Mental health/behavioral health
  • Juvenile Justice
  • Vocational Rehabilitation
what is title v s role

WHAT IS TITLE V’S ROLE?

APPLYING A PUBLIC HEALTH APPROACH TO THIS POPULATION

legislative authority
Legislative Authority

Omnibus Budget Reconciliation Act of 1989 (OBRA 89)– established the MCHB’s authority to:

“Facilitate the development of community-based systems of services for CYSHCN and their families”; and

“Promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for CYSHCN and their families.

healthy people 2010 and 2020
Healthy People 2010 and 2020

Surgeon General Healthy People 2010 and 2020:

Increase the proportion of States and territories that have service systems for CYSHCN;

Increase the proportion of CYSHCN who have access to a medical home;

Increase the proportion of YSHCN whose health care provider has discussed transition planning from pediatric to adult health care;

Reduce the proportion of people with disabilities who encounter barriers to participating in home, school, work, or community activities.

a public health approach
A Public Health Approach

Categorizing children by diagnosis led to a proliferation of disease specific “systems” – disease “silos”;

Service needs are not limited to children with specific diagnoses -all CYSHCN have elevated service needs beyond those of the “average” child;

Shifts the focus from diagnosis to a focus on addressing those systemic issues that affect all CYSHCN regardless of diagnosis.

Families – no matter what the diagnosis- face barriers to accessing services and navigating systems and multiple providers

what do families want
What Do Families Want?

Access to a medical home;

Family partnership in decision-making;

Early and continuous screening;

Adequate financing for needed services;

Services organized for easy use;

Transition to adult health care.

THE SIX NATIONAL PERFORMANCE MEASURES

Risk and Protective Factors

meeting the goal 2010 status
Meeting the Goal: 2010 Status

Access to a medical home; (43%)

Family partnership in decision-making; (70%)

Early and continuous screening; (79%)

Adequate financing for needed services; (61%)

Services organized for easy use; (65%)

Transition to adult health care. (40%)

CYSHCN for whom the system met all: (18%)

BUT significant disparities exist across race, income and functional limitations.

what is an integrated system
What is an integrated system?

“linkage of programs and activities to promote overall efficiency and effectiveness and achieve gains in population health.”

Mutual Awareness

Collaboration

Isolation

Merger

Cooperation

Partnership

Institute of Medicine. Primary Care and Public Health Exploring Integration to Improve Population Health. 2012

iom report on primary care public health principles of integration
IOM Report on Primary Care & Public Health: Principles of Integration
  • Shared goal of population health improvement;
  • Community engagement to define and address population health needs;
  • Aligned leadership;
  • Sustainability = establishment of a shared infrastructure and building for enduring value and impact;
  • Shared and collaborative use of data and analysis;
  • Integration can evolve

Source:  IOM (Institute of Medicine). 2012. Primary Care and Public Health: Exploring Integration to Improve Population Health.Washington, DC: The National Academies Press.

what does it mean to build an integrated system
What Does it Mean to Build an Integrated System?

“building blocks do not alone constitute a system, any more than a pile of bricks constitutes a functioning building. It is the multiple relationships and interactions among the blocks—how one affects and influences the others, and is in turn affected by them—that convert these blocks into a system.”

Source: Don de Savigny and Taghreed Adam (Eds). Systems thinking for health systems strengthening. Alliance for Health Policy and Systems Research, WHO, 2009.

converting blocks into a system

Converting Blocks into a System

The State Implementation Grants for Integrated System of Services (D70)

state implementation grantees d70s
State Implementation Grantees (D70s)

Washington

Maine

Montana

North Dakota

Minnesota

Oregon

New Hampshire

Wisconsin

Vermont

Idaho

South Dakota

New York

Massachusetts

Michigan

Wyoming

Rhode Island

Pennsylvania

Iowa

Connecticut

Nebraska

Nevada

Ohio

New Jersey

Utah

Illinois

West Virginia

Indiana

Delaware

Colorado

Kansas

Missouri

Maryland

California

Virginia

Kentucky

North Carolina

Tennessee

Oklahoma

Arizona

Arkansas

New Mexico

South Carolina

Alabama

Georgia

Mississippi

Texas

Louisiana

Florida

District of Columbia

N.N.*

Alaska

*Navajo Nation

2012

2014

2015

2008

2009

2011

Hawaii

strategies for systems integration

Build, enhance, and maximize partnerships;

Engage family and youth as partners; leaders, and agents of change;

Use Continuous Quality Improvement (CQI);

Use data to build capacity and measure impact;

Provide technical assistance, resources, and support;

Promote policy and legislative changes.

Strategies for Systems Integration
minnesota sustaining system change through legislation
Minnesota: Sustaining System Change Through Legislation
  • Over 7,500 CSHCN identified by teams;
    • 1,200 care plans were written
  • Top 3 areas of QI: delivery system design, care partnership support, and clinical information systems;
  • Analysis of claims data for 500 children in 9 medical home practices:
    • ER visits & inpatient admissions decreased;
    • Dental & well child visits increased.

36 teams from medical practices participated in 6 Medical Home Learning Collaboratives using PDSA cycles.

Work resulted in funding to continue and expand Medical Home Learning Collaborative; 

MN Health Care Home legislation passed in 2008.

utah integrated services through qi
Utah: Integrated Services through QI
  • Utah Pediatric Partnership to Improve Healthcare Quality (UPIQ) Learning Collaborative to spread medical home as a practice standard
  • Utilized multiple methods
    • 5 Sessions followed by site visits to practices
    • Emails, monthly conference calls and weekly “resource news”
    • Data including Medical Home Index (MHI), Medical Home Family Index (MHFI), Chart Reviews, Medical Home Provider & Transition Surveys
  • Spread this model to autism

Successful elements of the UISP project were continued, including medical home portal (www.medhomeportal.org) which is key component of CHIPRA quality demonstration project and is being spread to other states

making a difference
Making a Difference

“This grant has been “essential” and made a huge difference to Title V as we moved away from direct clinical services to care coordination in the New Orleans region.

The grant came just at the right time and is “filling the gap” by expanding the Family Resource Center (FRC) to help families navigate the system.”

-- Susan Berry, Medical Director, LA Title V, 2012

title v index

A tool developed by Title V Leaders Involved in the Learning Collaboratives

  • Assesses progress toward becoming a quality improvement organization
  • Guides development of a state system capable of creating and sustaining integrated systems of care for CYSHN
  • Prompts reflection and examination of program strengths and weaknesses
  • Helps Title V programs identify and implement improvement strategies
Title V Index
title v index domains and indicators
TITLE V INDEX: DOMAINS AND INDICATORS
  • Strategic leadership
  • Partnerships across public and private sectors
  • Quality Improvement
  • Use of available resources
  • Coordination of service delivery
  • Data Infrastructure

Preparation

Preliminary action steps

Implementation

Mastery

Sustainability

cshcn leadership document
CSHCN LEADERSHIP DOCUMENT
  • Specific skills & content knowledge required of CSHCN Leaders
  • Based on MCH Leadership Competencies & Title V Index
  • Six attributes: Overall Leadership; Quality Improvement; Use of Resources; Service and Coordination; Partnership; Data Infrastructure
  • Discussion: Does this reflect your role in your state?
national centers
NATIONAL CENTERS

National Center for Family Professional Partnership: www.fv-ncfpp.org

National Center for Cultural Competence: http://nccc.georgetown.edu

The Catalyst Center for Improving Financing: www.hdwg.org/catalyst

The National Center of Medical Home Initiatives: www.medicalhomeinfo.org

National Center for Hearing Assessment and Management: www.infanthearing.org

National Center for Community Based Services: www.communitybasedservices.org

Got Transition: www.gottransition.org

other system resources
OTHER SYSTEM RESOURCES
  • Data Resource Center for Child & Adolescent Health:

www.childhealthdata.org

  • AMCHP:www.amchp.org
  • Models of Care for Children and Youth with Special Health Care Needs
  • Champions for Inclusive Communities: http://www.eiri.usu.edu/projects/champions
      • Defining a System of Care – multi-media presentation
      • A State-Level Tool Kit for Building a Community-Based Service System
  • JSI Project Spaces

www.projectspaces.jsi.com

      • D70 state resources
      • E-mail to hilary_segar@jsi.com
questions
QUESTIONS??

Lynda Honberg

Lhonberg@hrsa.gov

301-443-6314

Kathy Watters

Kwatters@hrsa.gov

301-443-0272