Transcript PEDIATRIC ALLIANCE FOR COORDINATED CARE

Chronic Illness and Disability
in Children and Adolescents:
Implications for Transition
Judith S. Palfrey, MD
Susan Foley, PhD
University of Minnesota
January, 2007
Invitational Transition Conference 2008
Building an Interdisciplinary Research Agenda to
Enhance Quality of Life and Transition to Adulthood
for Youth with Chronic Health Conditions
January 18, 2008
Speaker Judith S. Palfrey, MD
T. Berry Brazelton Professor of Pediatrics, Harvard Medical School
Professor, Harvard School of Public Health
Chief, Division of General Pediatrics, Children’s Hospital Boston
PI, Opening Doors for Children and Youth with Disabilities and Special Health Care Needs
Sponsors:
University of Minnesota School of Nursing, Center for Children with Special Healthcare Needs
Minnesota Department of Health – Minnesota Children with Special Health Needs
Co-sponsors:
Department of Pediatrics, University of Minnesota Medical School
Maternal & Child Health, University of Minnesota School of Public Health
The Institute on Community Integration, University of MN College of Education and Human
Development
Children and Adolescents:
Implications for Transition
Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational
Transitions
• Research Agenda
Children and Adolescents:
Implications for Transition
Introduction
Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational
Transitions
• Research Agenda
1900-1960s
• High Rates of Infant Mortality
• Especially among prematures
• Epidemics including Polio
• 21,000 new cases in 1952
• Few Cures for Chronic Illnesses
• Few Surgeries for Congenital
Anomalies
• Institutionalization
1960s-1980s
•
•
•
•
•
•
Vaccines, Antibiotics
Neonatal Care
The “Ologies”
Surgery for Congenital Anomalies
Medicines for Chronic Illnesses
Physiologic Explanation for Disease
States
• Deinstitutionalization/civil rights
1980s-2000
• Polio Decrease
• Greater Prominence of
• Post NICU Conditions
• Congenital Anomalies
• Chronic Illnesses
• HIV Epidemic
• Technology Assistance
• Community Inclusion
Millennial Morbidity
• Illness Created or Sustained
through 21st Century Technologies
– High Rates of Injuries (TBI)
– Second Generation Illness (Children
of Diabetics increase in Congenital
Anomalies)
– Cohort Survivorship
Children and Adolescents:
Implications for Transition
Introduction
Historical Context
Current Epidemiology
Current Needs
• Medical and Educational
Transitions
• Research Agenda
Leading Causes of Death: By age
RANK
<1
1-4
5-9
10-14
15-24
1
Congenital
Anomalies
Unintentiona
l Injury
Unintentiona
l Injury
Unintentiona
l Injury
Unintentiona
l Injury
2
Short Gestation
Congenital
Anomalies
Malignant
Neoplasms
Malignant
Neoplasms
Homicide &
Legal Int.
3
SIDS
Homicide &
Legal Int.
Congenital
Anomalies
Suicide
Suicide
4
Maternal
Complications
Malignant
Neoplasms
Homicide &
Legal Int.
Homicide &
Legal Int.
Malignant
Neoplasms
5
Respiratory
Distress
Syndrome
Heart Disease
Heart Disease
Congenital
Anomalies
Heart Disease
6
Placenta Cord
Membranes
Pneumonia &
Influenza
Pneumonia &
Influenza
Heart Disease
Congenital
Anomalies
7
Perinatal
Infections
Septicemia
Bronchitis
Emphysema
Asthma
Bronchitis
Emphysema
Asthma
Bronchitis
Emphysema
Asthma
8
Unintentional
Injury
Perinatal
Period
Benign
Neoplasms
Pneumonia &
Influenza
Pneumonia &
Influenza
Leading Causes of Death: By age
RANK
<1
1-4
5-9
10-14
15-24
1
Congenital
Anomalies
Unintentiona
l Injury
Unintentiona
l Injury
Unintentiona
l Injury
Unintentiona
l Injury
2
Short Gestation
Congenital
Anomalies
Malignant
Neoplasms
Malignant
Neoplasms
Homicide &
Legal Int.
3
SIDS
Homicide &
Legal Int.
Congenital
Anomalies
Suicide
Suicide
4
Maternal
Complications
Malignant
Neoplasms
Homicide &
Legal Int.
Homicide &
Legal Int.
Malignant
Neoplasms
5
Respiratory
Distress
Syndrome
Heart Disease
Heart Disease
Congenital
Anomalies
Heart Disease
6
Placenta Cord
Membranes
Pneumonia &
Influenza
Pneumonia &
Influenza
Heart Disease
Congenital
Anomalies
7
Perinatal
Infections
Septicemia
Bronchitis
Emphysema
Asthma
Bronchitis
Emphysema
Asthma
Bronchitis
Emphysema
Asthma
8
Unintentional
Injury
Perinatal
Period
Benign
Neoplasms
Pneumonia &
Influenza
Pneumonia &
Influenza
Children with Special Needs
No comprehensive
catalogue of
chronic illness
and disability
until Gortmaker
and Sappenfeld
in 1984
Prevalence of CSHCN
6%
13%
30%
6%
13%
30%
Mod/sev functional limitations
MCHB definition
Any occurrence
Conditions with Increases in
Prevalence
1980s-2000s
– Asthma
– Obesity
– Depression
– ADHD
– IBD
– Leukemia
– Diabetes
– CHD
– Autism
Increases in Prevalence
(courtesy Jim Perrin)
16%
14%
12%
10%
8%
6%
4%
2%
0%
early 1980s
mid 1990s
Obese
(>95%ile)
Extreme
Obesity
(>99%ile)
Asthma
ADHD
Conditions with
Decreases in Prevalence
1980s-2000s
– Spina Bifida
– Down Syndrome
– JRA
Conditions with Little or No
Change in Prevalence
1980s-2000s
− Cerebral Palsy
− Cystic Fibrosis
− Sickle Cell Anemia
Conditions with Increases in
Survival
• Congenital Heart
Disease
• Leukemia
• Cystic Fibrosis
• Sickle Cell Anemia
• Spina Bifida
• Cerebral Palsy
• HIV
• Down Syndrome
Survival to Age 20
100
75
Percent
50
survival
1980s
2000s
25
el
l
C
ck
le
Si
D
ow
n
Sy
n
Fi
b
C
ys
ti c
B
if
in
a
Sp
Le
uk
em
ia
0
Racial Disparities in Survival
Survival
Low Birth Weight and Prematures
Increased survival
rate of low birth
weight infants
• 50% in 1980
• 80% in 2000
Survival
Low Birth Weight and Prematures
• Chronic lung
disease
• Short bowel
syndrome
• Cerebral palsy
• Vision/Hearing
abnormalities
Assistance by Medical
Technology
•
•
•
•
Oxygen
Tracheostomy
Gastrostomy
Total Parenteral
Nutrition
• Shunts
• CIC
• Etc.
Inpatient Health Services
Utilization
Children with Special Health Care
Needs Transitioning to Adulthood
High Rates of Hospitalizations
Adolescents with disabilities
and chronic illness make up
substantial proportion of inpatient service
In Children’s Hospitals
In General Hospitals
Health Care Expenditures
Expenditures are high
(E.G. asthma costs for
adolescents close to
$1Billion)
High utilization of Medicaid
dollars
Use of Medicaid Insurance
Ages 14 – 20 years
• 42% of hospitalizations for all diseases
• Highest use in patients with Sickle Cell
Disease (64%)
• $968 million in total Charges for
Medicaid inpatients
Employment and
Educational Impact
Children with Special Health Care Needs
Transitioning to Adulthood
Education/Employment
•
•
•
•
Many missed days of school
Some youth “out of school”
Concerns about employment
Education/careers/livelihood
Hospital Days/Missed School
Condition
Length of Stay
Cystic Fibrosis
8 (4 – 18) days
Technology
5 (2 – 9) days
Sickle Cell
4 (2 – 7) days
Employment Impact
Condition
Impact
Cystic Fibrosis
45-52% unemployed
IBD
32-38% unemployed
Asthma
5X more likely to
report inability to
work
“Out of School” Youth
Nationally representative sample (NLT2)
2001 and 2003
– 11, 000 (13-16 yr)
Special Ed services grade 7 or above
– As of December 1, 2000
28% of youth were out of school in 2003
“Out of School Youth”
28% left without a diploma
Highest dropout for those with
emotional disabilities (44%)
Most youth have few functional
impairments and are reported to
be in good health
“Out of School Youth”
Some youth in every disability
category have significant
functional impairments
Social skills are reported to be the
most problematic
Employment After High School
For Youth With Disabilities
The Bad News
40% working for pay (vs. 63% for
youth without disabilities)
The Better News
Working more hours per week and
more are working full-time than they
were in 2001.
Employment After High School
For Youth With Disabilities
The Good News
Hourly wages have increased with
fewer working for less than
minimum wage
The Less Good News
Most not receiving accommodations
from their employers and most have
not disclosed their disability
Children and Adolescents:
Implications for Transition
Introduction
Historical Context
Current Epidemiology
Current Needs
Medical and Educational
Transitions
• Research Agenda
Child/Family includes
family support
resources
Pediatrician and
other medical
providers
School includes
early
intervention
Insurance
providers/financial
resources
CommunityBased Team
Social Services
includes mental health
Religious /spiritual
supports
Transition Considerations
• Conditions Complex
• Cultural Concerns
• Medical Home works but not
familiar to Internists
• Models of MedicalTransition
• Educational/Employment
Considerations
Characterization of CSHCN
HAVE MULTIPLE CONDITIONS (n=151)
6%
13%
9%
48%
15%
9%
>five
five
four
three
two
one
Trends in US Immigration
10
12
9
Number (in millions)
7
8
6
5
6
4
4
3
2
Rate (per 1,000 people)
10
8
2
1
Year
19
90
19
80
19
70
19
60
19
50
19
40
19
30
19
20
0
19
10
19
00
0
Number
Rate
Source: US Census Bureau. Statistical Abstract of the United States: The National Data Book. 120th Ed
The Medical Home Model
•
•
•
•
•
Comprehensive
Coordinated
Continuous
Culturally Appropriate
Family Centered Care
Individualized Health Plan
(IHP)
• Document for Family and Caregivers
• Summary of Medical Information
Three Proposed Models
• Diagnosis or Condition-based services
• Age based services for various chronic
conditions
• Primary Care services
Diagnosis Based
• Diagnosis or Condition-based services
– Based on common needs of patients with
a particular diagnosis or patients utilizing
a particular subspecialist
Age Based
• Age based services for various
chronic conditions
– Multidisciplinary team for adolescents
transitioning in multiple areas of life,
school, work, home, healthcare
Primary Care
• Primary Care services
– Integrating transition planning and
coordination into the medical home at
the level of the PCP
Common Principles
• Care coordination
• Self-determination/empowerment
for adolescents and families
• Community agency involvement
Common Principles
• Utilization of toolkits
• Resources
– local, state, national transition related
activities
• Inclusion
– Social work, financial counseling,
vocational rehabilitation services
Possible Implications for
Social Service Systems
• General principles conform to
transition principles encoded in IDEA
• Condition specific models may not
speak to the adult systems emphasis
on function rather than condition
Possible Implications for
Social Service Systems
• Who is in charge of the transition plan
from conception through
implementation? PCP? VR
Caseworker? Youth? Family? Other
person(s). Are there too many chefs in
the kitchen?
Educational/Employment
Options
•
•
•
•
Adult Service System
Competitive Employment
Post Secondary Education
At home with no supports
Children and Adolescents:
Implications for Transition
Introduction
Historical Context
Current Epidemiology
Current Needs
Medical and Educational
Transitions
Research Agenda
Propositions:
The Big Picture
We need to raise expectations:
To be underestimated is the
worst type of handicap
Propositions:
The Big Picture
Society makes long-term
investment in 0 to 22 years, but
there is still a cliff at age 22
Propositions:
The Big Picture
Alignment between social
services and clinical services is
critically needed
Research:
The Big Picture
Need questions and
methodologies to get at the
bottom of these issues
Of Raised Expectations
Of The Cliff
Of Aligning Services
Raising Expectations
1. How do medical providers,
educators and parents work
together on identifying the
strengths and interests of the
young people?
2. What are the best practices that
maximize opportunities for young
people with disabilities?
Raising Expectations
3. How are best practices
disseminated?
4. What systemic, cultural and
financial barriers are blocking full
implementation of best practice?
Raising Expectations
5. How do we measure “successful
transition” and what relationship do
these measures have to youth
expectations?
6. Cross-system professional
development opportunities that link
condition-specific knowledge (how to
serve youth with autism) with function
specific support needs (how to
support individuals with social skills
deficits).
Raising Expectations
7. Coordination across disciplines and
across systems without creating too
many chefs in the kitchen.
8. Clarity of goal and simplicity of action
and process. Do we over plan and
under serve?
9. What are best practices, how do we
disseminated and who has access to
them?
Cliff-hanging, Hang-Gliding or
What???
1.
Does public policy (health care coverage, SSI) align
with growth and development of youth?
2.
Who discusses health insurance and income support
options with youth and families? Are these discussed
in the context of paying for services or as
mechanisms to achieve a productive healthy life.
Cliff-hanging, Hang-Gliding or
What???
3. Are there incentives specific to
teenagers that promote
developmentally appropriate efforts to
engage in work and post secondary
education?
Cliff-hanging, Hang-Gliding or
What???
4. Beyond ADA and IDEA and the New
Freedom Initiative, are there
mechanisms for assuring the young
people with significant disability and
health impairment receive the type of
services they require? (Systems
reform at the Voc. Rehab level and
DMR level)
How Do We Align Services?
1. What training is needed for educators
and medical clinicians?
2. Professional development
opportunities that instigate cross
system contact.
How Do We Align Services?
3. Beyond professional development:
Looking at mechanisms that insure
cross-system implementation including
client tracking, service integration.
4. Are there financing mechanisms that
can bring services closer together?
Joint funding mechanisms.
How Do We Align Services?
5. What role should parents play?
6. What role do youth have in aligning
services?
7. Are there financing mechanisms that
can bring services closer together?
Research Considerations
• Socioeconomic
factors
• Influence of race
and racism
• Influence of
language
• Disparities in
outcomes
Data on CSHCN
• U.S. Department of Health
and Human Services,
Health Resources and
Services Administration,
Maternal and Child Health
Bureau. The National
Survey of Children with
Special Health Care Needs
Chartbook 2001. Rockville,
Maryland: U.S. Department
of Health and Human
Services, 2004.
• Soon will be a new
chartbook
Data on CSHCN
• No difference in prevalence by income
– Despite higher risks for disability by income
• Differences in prevalence by race/ethnicity
– Especially marked for non-English speaking
groups
• Children in poverty and undeserved
groups may have more complex
conditions
• Unequal access to services
Data on CSHCN
Data on CSHCN
Data on CSHCN
Data on CSHCN
Data on CSHCN
Data on CSHCN
Research In Minnesota
• Focus on strengths and positive
development
• Identify strategies that raise
expectations and avoid cliff hanging
• Work to align services
• Put research in the context of the
family and the community
environment