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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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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)
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)
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
APPLYING A PUBLIC HEALTH APPROACH TO THIS POPULATION
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.
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.
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
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
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.
“linkage of programs and activities to promote overall efficiency and effectiveness and achieve gains in population health.”
Institute of Medicine. Primary Care and Public Health Exploring Integration to Improve Population Health. 2012
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.”
Source: Don de Savigny and Taghreed Adam (Eds). Systems thinking for health systems strengthening. Alliance for Health Policy and Systems Research, WHO, 2009.
The State Implementation Grants for Integrated System of Services (D70)
District of Columbia
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
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.
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
“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
A tool developed by Title V Leaders Involved in the Learning Collaboratives
Preliminary action steps
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