improving the system of services for children and youth with special health care needs
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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 - PowerPoint PPT PresentationTRANSCRIPT
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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
Assess Title V’s role in promoting/facilitating this system
How have other states worked to improve the system
Resources to support system improvement
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Who Are Children and Youth with Special Health Care Needs?
Estimate resources and personnel requirements
Define population for needs assessment Identify research needs Evaluate services Define a social agenda
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WHY DOES THE DEFINITION MATTER?
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)
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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)
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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
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2010/118
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
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WHAT IS TITLE V’S ROLE?
APPLYING A PUBLIC HEALTH APPROACH TO THIS POPULATION
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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.
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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.
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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
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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
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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.
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What is an integrated system?
“linkage of programs and activities to promote overall efficiency and effectiveness and achieve gains in population health.”
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Partnership
Collaboration
Cooperation
Mutual Awareness
Isolation Merger
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
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
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Source: IOM (Institute of Medicine). 2012. Primary Care and Public Health: Exploring Integration to Improve Population Health. Washington, DC: The National Academies Press.
“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.”
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What Does it Mean to Build an Integrated 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
The State Implementation Grants for Integrated System of Services (D70)
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Foundation for System Change
FAMILIES
Alabama
Arizona Arkansas
CaliforniaColorado
Florida
Georgia
Idaho
IllinoisIndiana
Iowa
KansasKentucky
Louisiana
Maine
MassachusettsMichigan
Minnesota
Mississippi
Missouri
Montana
NebraskaNevada
New Hampshire
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Connecticut
DelawareMaryland
New Jersey
Rhode Island
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State Implementation Grantees (D70s)
Alaska
Hawaii
District of Columbia
2008
2009
2011
2012
2014
2015
*Navajo Nation
N.N.*
Strategies for Systems Integration
1. Build, enhance, and maximize partnerships;
2. Engage family and youth as partners; leaders, and agents of change;
3. Use Continuous Quality Improvement (CQI);
4. Use data to build capacity and measure impact;
5. Provide technical assistance, resources, and support;
6. Promote policy and legislative changes. 23
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Colorado: Serving One Section vs the Entire Stadium
Minnesota: Sustaining System Change Through Legislation
Work resulted in funding to continue and expand Medical Home Learning Collaborative; MN Health Care Home legislation passed in 2008.
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.
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36 teams from medical practices participated in 6 Medical Home Learning Collaboratives using PDSA cycles.
Utah: Integrated Services through QI
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
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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
“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
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Making a Difference
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
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1. Strategic leadership2. Partnerships across
public and private sectors
3. Quality Improvement4. Use of available
resources5. Coordination of
service delivery6. Data Infrastructure
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TITLE V INDEX: DOMAINS AND INDICATORS
1. Preparation2. Preliminary action
steps3. Implementation4. Mastery5. Sustainability
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?
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CSHCN LEADERSHIP DOCUMENT
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
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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 presentationA State-Level Tool Kit for Building a Community-Based Service System
JSI Project Spaces www.projectspaces.jsi.com
D70 state resourcesE-mail to [email protected]
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OTHER SYSTEM RESOURCES
