Innovations and Challenges in
Coordinated Care for Chronically
ill Children
John M. Neff, M.D.
Professor of Pediatrics
University of Washington School of Medicine
Center for Children with Special Needs
Children’s Hospital and Regional Medical Center
Seattle, Washington
Acknowledgements
• National Association of Children’s Hospitals and
Related Institutions, NACHRI
• Maternal Child Health Bureau HRSA Grant
• Co-investigators:
Virginia Sharp, Ctr for Children with Spec. Needs
Jean Popalisky, Ctr for Children with Spec. Needs
Tracy Fitzgibbon, Regence Blue Shield
John Muldoon, NACHRI
Acknowledgements
Information on spectrum of children with chronic
conditions and care coordination activities is
based on recently completed work of the Center
for Children with Special Needs with Regence
Blue Shield of Washington (MCHB grant).
• 31,000 children were tracked over four
consecutive calendar years 2002-2005.
• Children with chronic conditions were identified
using CRGs, a soft ware developed by 3m.
• Care coordination practices were analyzed.
Outline of Topics Covered
• Similarities between chronically ill adults and
children.
• Differences that are unique to the childhood
population.
• The Medical Home Concept.
• Success and Challenges in the pediatric model.
• Issues that need to be addressed.
Similarities between chronically ill
adults and chronically ill children
• Chronic conditions account for a large
proportion of costs.
• Optimal care coordination requires collaboration
among many disciplines.
• Success of care coordination activities are
impacted by co-morbid mental health
conditions.
• Many care coordination functions are not
reimbursed.
Differences unique to the
childhood population
1. Spectrum of chronic conditions.
2. Pediatric specialists.
3. Insurance coverage
4. Families role.
5. Transition to adult care.
1. Spectrum of chronic conditions
• Approximately 10% - 16% of children have chronic
conditions that require added services and account
for >50% of costs
• Asthma occurs in 4-6% and ADHD in 2-4% of all
children.
• Emotional and behavioral conditions occur in
6-12% of all children; in about 30% of children with
chronic conditions and 13% of other family
members.
• Other individual chronic conditions occur <1% of the
childhood population.
Spectrum of chronic conditions
(cont)
• Most chronic conditions in children have variable
manifestations that change year by year and
may not progress to chronic conditions in adults.
• Asthma and ADHD, the conditions that account
for 30% of children with chronic conditions, are
highly variable, change and often improve with
age.
Spectrum of chronic conditions
(cont)
Based on our work with Regence Blue Shield of Wash.
31000 children were tracked over four consecutive years
using administrative data and CRGs for identification:
7.5% children were identified to have a chronic
condition in year one.
73.1% of these showed condition improvement.
5.7% showed progression to a more complex
condition.
Spectrum of chronic conditions
(cont)
• A small percentage of children, approximately
1% or less have chronic conditions that are
known to be life long and in all probability
progressive. These conditions account for over
10% of all health care costs for children.
(Washington State Health Plan, Neff, Sharp and Popalisky)
Spectrum of chronic conditions
The principal examples of life long progressive
conditions:
• cerebral palsy
• type one diabetes
• muscular dystrophy
• spinal cord defects
• cystic fibrosis
• variety of unusual neurological, immunologic,
metabolic and genetic conditions
2.
Pediatric Specialists
• Many chronic conditions is childhood occur infrequently.
• Primary care pediatricians may have limited personal
experience in many chronic conditions in childhood.
•
There are a limited number of pediatric specialists and
most are located at academic centers.
• Specialists are not trained in primary care.
• Part of care coordination is education of primary care
pediatrician.
3. Insurance Coverage
• Children are entirely dependent on parent’s
insurance coverage or on Medicaid.
• Medicaid coverage depends on income status of
parents.
• Coverage and practices are dependent
primarily on state initiatives.
4. Family Role
• Family centered care is an essential component
to pediatric care at all levels. Families are
partners in care coordination.
• Success of family centered care model
dependents considerably on the cultural,
emotional and financial status of the family.
5. Transition to Adult Care
• Involves issues of self care, independence, changes in
support and coverage, education and living environment.
• Transition to self care follows developmental stages of
children and is highly dependent on the cognitive and
emotional state.
• Essential issues: sexuality, drug and alcohol use.
• Requires considerable coordination between adult and
pediatric providers.
Medial Home Concept
• Defined in 1992 and standardized in 2002 by the
American Academy of Pediatrics
• Medical Home provides care that is accessible,
continuous, comprehensive, family centered,
coordinated, compassionate and culturally
effective.
• A major national agenda of US MCHB:
“All children with special needs have a medical
home by 2010”.
Medical Home Components
1. Plan of care.
2. Central record.
3. Shares information among the child, family,
and consultants.
Medical Care Components
4. Families linked to family support groups.
5. Assists the child and family in understanding
clinical issues.
Medical Care Components
6. Evaluates and interprets consultants'
recommendations for the child.
7. Plan of care is coordinated with educational
and other community organizations.
Medical Home Components
carried out by plan and practices
Health Plan care coordination components
123 children with chronic problems selected
for care coordination activities by plan. (n-165 encounters)
Two practices that follow Medical Home model components
167 children with chronic problems selected by the
practices. (n-1083 encounters).
(Washington State Health Plan Neff, Sharp and Popalisky)
Medical Home Components
carried out by plan
•
•
•
•
•
•
Education: health care system& serv.
Needs and assessment.
Community services, ref. and cord.
Assistance with health plan issues.
Financial planning and assist.
Transition assistance.
32%
30%
22%
13%
2%
1%
(Washington State Health Plan Neff, Sharp and Popalisky)
Medical Home Components
carried out by practice
•
•
•
•
Family support.
Disease management.
Medication & equipment
Referrals for specialty care
49%
28%
13%
10%
(Washington State Health Plan Neff, Sharp and Popalisky)
Findings
• Plan and practice activities are appropriate and generally not
duplicated.
• Poor documentation of care coordination process by the
practices.
• Plan activities are financially supported by the plan.
• Practice activities are not financially supported by the plan.
Strengths in the Pediatric Model
• Concept is endorsed by and a major goal of the
American Academy of Pediatrics and US Maternal Child
Health Bureau.
• Care coordination is possible because of infrequency of
complicated chronic conditions and somewhat of a
regional system of care for children.
• Health plans are required do care coordination of
children with special health care needs as a part of
Medicaid contracts.
Challenges in the Pediatric Model
• To identify and agree on children who would
benefit most from care coordination.
• To improve documentation of care coordination
activities.
• To improve coordination of care management
between primary and specialty care.
Challenges in the Pediatric Model
• Success is heavily dependent on emotional and
financial strengths of family, yet current health
care environment drains families’ resources.
• Success is heavily dependent on coordinated
treatments of co-morbid mental and physical
conditions yet the mental health care system is
separate from the medical care system.
.
Challenges in the Pediatric Model
• Appropriate coordination of activities between
the practice and the plan.
• Appropriate reimbursement of care management
activities between the practice and the plans.
• Care coordination for children with chronic
conditions is not a focus of health plans and is
often lost within the adult system.
Essential Issues that Need to be
Addressed
• Identify the children who will benefit most from
care coordination.
• Define who is responsible for specific aspects of
care coordination.
• Documentation of care coordination.
Essential Issues that Need to be
Addressed
• Financial support for care coordination
activities.
• Support for families with children with chronic
conditions.
• Coordinate mental and physical health systems.
Essential Issues that Need to be
Addressed
• Improve information technology to assist care
coordination.
• Medical and pediatric disciplines collaborate in
improving transition of children to adulthood.