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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 - PowerPoint PPT Presentation
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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 2008Building 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, MDT. Berry Brazelton Professor of Pediatrics, Harvard Medical SchoolProfessor, Harvard School of Public Health Chief, Division of General Pediatrics, Children’s Hospital BostonPI, 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 NeedsMinnesota Department of Health – Minnesota Children with Special Health Needs
Co-sponsors:Department of Pediatrics, University of Minnesota Medical SchoolMaternal & Child Health, University of Minnesota School of Public HealthThe 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
Unintentional Injury
Unintentional Injury
Unintentional Injury
Unintentional Injury
2 Short GestationCongenital Anomalies
Malignant Neoplasms
Malignant Neoplasms
Homicide & Legal Int.
3 SIDSHomicide & Legal Int.
Congenital
Anomalies Suicide Suicide
4 Maternal Complications
Malignant Neoplasms
Homicide & Legal Int.
Homicide & Legal Int.
Malignant Neoplasms
5Respiratory
Distress Syndrome
Heart Disease Heart DiseaseCongenital Anomalies
Heart Disease
6 Placenta Cord Membranes
Pneumonia & Influenza
Pneumonia & Influenza
Heart DiseaseCongenital Anomalies
7 Perinatal Infections
SepticemiaBronchitis
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
Unintentional Injury
Unintentional Injury
Unintentional Injury
Unintentional Injury
2 Short GestationCongenital Anomalies
Malignant Neoplasms
Malignant Neoplasms
Homicide & Legal Int.
3 SIDSHomicide & Legal Int.
Congenital
Anomalies Suicide Suicide
4 Maternal Complications
Malignant Neoplasms
Homicide & Legal Int.
Homicide & Legal Int.
Malignant Neoplasms
5Respiratory
Distress Syndrome
Heart Disease Heart DiseaseCongenital Anomalies
Heart Disease
6 Placenta Cord Membranes
Pneumonia & Influenza
Pneumonia & Influenza
Heart DiseaseCongenital Anomalies
7 Perinatal Infections
SepticemiaBronchitis
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
13%
6%
30%
Mod/sev functional limitations
MCHB definition
Any occurrence
6%13%
30%
Conditions with Increases in Prevalence
1980s-2000s
– Asthma– Obesity – Depression– ADHD
– IBD
– Leukemia
– Diabetes
– CHD
– Autism
0%
2%
4%
6%
8%
10%
12%
14%
16%
Obese(>95%ile)
ExtremeObesity
(>99%ile)
Asthma ADHD
early 1980smid 1990s
Increases in Prevalence(courtesy Jim Perrin)
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
0
25
50
75
100
Leuke
mia
Spina
Bif
Cystic
Fib
Down
Syn
Sickl
e Cel
l
Percent survival
1980s
2000s
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 in-patient 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
• 42% of hospitalizations for all diseases
• Highest use in patients with Sickle Cell Disease (64%)
• $968 million in total Charges for Medicaid inpatients
Use of Medicaid InsuranceAges 14 – 20 years
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
Cystic Fibrosis
IBD
Asthma
Impact
45-52% unemployed
32-38% unemployed
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 SchoolFor Youth With Disabilities
The Bad News40% working for pay (vs. 63% for youth without disabilities)
The Better NewsWorking more hours per week and more are working full-time than they were in 2001.
Employment After High SchoolFor Youth With Disabilities
The Good NewsHourly wages have increased with fewer working for less than minimum wage
The Less Good NewsMost 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
Community-Based Team
Child/Family includes family support
resources
Insurance providers/financial
resources
Pediatrician and other medical
providers
School includes early
intervention
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)
48%
9%
15%
9%
13%
6%
>fivefivefourthreetwoone
Trends in US Immigration
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 Expectations1. 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 Expectations5. 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