Chronic Illness and Disability in Children and Adolescents: Implications for Transition

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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

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• 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, Childrens
  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

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Children and Adolescents Implications for
Transition

• Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational Transitions
• Research Agenda

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Children and Adolescents Implications for
Transition

• Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational Transitions
• Research Agenda

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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

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1960s-1980s

• Vaccines, Antibiotics
• Neonatal Care
• The Ologies
• Surgery for Congenital Anomalies
• Medicines for Chronic Illnesses
• Physiologic Explanation for Disease States
• Deinstitutionalization/civil rights

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1980s-2000

• Polio Decrease
• Greater Prominence of
• Post NICU Conditions
• Congenital Anomalies
• Chronic Illnesses
• HIV Epidemic
• Technology Assistance
• Community Inclusion

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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

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Children and Adolescents Implications for
Transition

• Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational Transitions
• Research Agenda

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Leading Causes of Death By age
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Leading Causes of Death By age
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Children with Special Needs

• No comprehensive catalogue of chronic illness and
  disability until Gortmaker and Sappenfeld in 1984

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(No Transcript)
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Conditions with Increases in Prevalence1980s-2000
s

• IBD
• Leukemia
• Diabetes
• CHD
• Autism

• Asthma
• Obesity
• Depression
• ADHD

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Increases in Prevalence(courtesy Jim Perrin)
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Conditions with Decreases in Prevalence1980s-200
0s

• Spina Bifida
• Down Syndrome
• JRA

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Conditions with Little or No Change in Prevalence
1980s-2000s

• Cerebral Palsy
• Cystic Fibrosis
• Sickle Cell Anemia

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Conditions with Increases in Survival

• Congenital Heart Disease
• Leukemia
• Cystic Fibrosis
• Sickle Cell Anemia
• Spina Bifida
• Cerebral Palsy

• HIV
• Down Syndrome

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Survival to Age 20
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Racial Disparities in Survival
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Survival
Low Birth Weight and Prematures

• Increased survival rate of low birth weight
  infants
• 50 in 1980
• 80 in 2000

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Survival
Low Birth Weight and Prematures

• Chronic lung disease
• Short bowel syndrome
• Cerebral palsy
• Vision/Hearing abnormalities

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Assistance by Medical Technology

• Oxygen
• Tracheostomy
• Gastrostomy
• Total Parenteral Nutrition
• Shunts
• CIC
• Etc.

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Inpatient Health Services Utilization

• Children with Special Health Care Needs
  Transitioning to Adulthood

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High Rates of Hospitalizations

• Adolescents with disabilities and chronic illness
  make up substantial proportion of in-patient
  service
• In Childrens Hospitals
• In General Hospitals

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Health Care Expenditures

• Expenditures are high
• (E.G. asthma costs for adolescents close to
  1Billion)
• High utilization of Medicaid dollars

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Use of Medicaid InsuranceAges 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

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Employment and Educational Impact

• Children with Special Health Care Needs
  Transitioning to Adulthood

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Education/Employment

• Many missed days of school
• Some youth out of school
• Concerns about employment
• Education/careers/livelihood

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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

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Employment Impact

• Condition
• Cystic Fibrosis
• IBD
• Asthma

• Impact
• 45-52 unemployed
• 32-38 unemployed
• 5X more likely to report inability to work

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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

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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

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Out of School Youth

• Some youth in every disability category have
  significant functional impairments
• Social skills are reported to be the most
  problematic

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Employment After High SchoolFor 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.

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Employment After High SchoolFor 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

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Children and Adolescents Implications for
Transition

• Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational Transitions
• Research Agenda

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Child/Family includes family support resources
Pediatrician and other medical providers
School includes early intervention
Community-Based Team
Insurance providers/financial resources
Religious /spiritual supports
Social Services includes mental health
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Transition Considerations

• Conditions Complex
• Cultural Concerns
• Medical Home works but not familiar to Internists
• Models of MedicalTransition
• Educational/Employment Considerations

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Characterization of CSHCN HAVE MULTIPLE
CONDITIONS (n151)
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Trends in US Immigration

• Source US Census Bureau. Statistical Abstract
  of the United States The National Data Book.
  120th Ed

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The Medical Home Model

• Comprehensive
• Coordinated
• Continuous
• Culturally Appropriate
• Family Centered Care

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Individualized Health Plan (IHP)

• Document for Family and Caregivers
• Summary of Medical Information

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Three Proposed Models

• Diagnosis or Condition-based services
• Age based services for various chronic conditions
• Primary Care services

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Diagnosis Based

• Diagnosis or Condition-based services
• Based on common needs of patients with a
  particular diagnosis or patients utilizing a
  particular subspecialist

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Age Based

• Age based services for various chronic conditions
• Multidisciplinary team for adolescents
  transitioning in multiple areas of life, school,
  work, home, healthcare

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Primary Care

• Primary Care services
• Integrating transition planning and coordination
  into the medical home at the level of the PCP

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Common Principles

• Care coordination
• Self-determination/empowerment for adolescents
  and families
• Community agency involvement

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Common Principles

• Utilization of toolkits
• Resources
• local, state, national transition related
  activities
• Inclusion
• Social work, financial counseling, vocational
  rehabilitation services

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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

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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?

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Educational/Employment Options

• Adult Service System
• Competitive Employment
• Post Secondary Education
• At home with no supports

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Children and Adolescents Implications for
Transition

• Introduction
• Historical Context
• Current Epidemiology
• Current Needs
• Medical and Educational Transitions
• Research Agenda

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PropositionsThe Big Picture

• We need to raise expectations To be
  underestimated is the worst type of handicap

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PropositionsThe Big Picture

• Society makes long-term investment in 0 to 22
  years, but there is still a cliff at age 22

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PropositionsThe Big Picture

• Alignment between social services and clinical
  services is critically needed

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ResearchThe Big Picture

• Need questions and methodologies to get at the
  bottom of these issues
• Of Raised Expectations
• Of The Cliff
• Of Aligning Services

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Raising Expectations

• How do medical providers, educators and parents
  work together on identifying the strengths and
  interests of the young people?
• What are the best practices that maximize
  opportunities for young people with disabilities?

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Raising Expectations

• How are best practices disseminated?
• What systemic, cultural and financial barriers
  are blocking full implementation of best
  practice?

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Raising Expectations

• How do we measure successful transition and
  what relationship do these measures have to youth
  expectations?
• 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).

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Raising Expectations

• Coordination across disciplines and across
  systems without creating too many chefs in the
  kitchen.
• Clarity of goal and simplicity of action and
  process. Do we over plan and under serve?
• What are best practices, how do we disseminated
  and who has access to them?

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Cliff-hanging, Hang-Gliding or What???

• Does public policy (health care coverage, SSI)
  align with growth and development of youth?
• 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.

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Cliff-hanging, Hang-Gliding or What???

• Are there incentives specific to teenagers that
  promote developmentally appropriate efforts to
  engage in work and post secondary education?

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Cliff-hanging, Hang-Gliding or What???

• 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)

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How Do We Align Services?

• What training is needed for educators and medical
  clinicians?
• Professional development opportunities that
  instigate cross system contact.

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How Do We Align Services?

• Beyond professional development Looking at
  mechanisms that insure cross-system
  implementation including client tracking, service
  integration.
• Are there financing mechanisms that can bring
  services closer together? Joint funding
  mechanisms.

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How Do We Align Services?

• What role should parents play?
• What role do youth have in aligning services?
• Are there financing mechanisms that can bring
  services closer together?

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Research Considerations

• Socioeconomic factors
• Influence of race and racism
• Influence of language
• Disparities in outcomes

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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

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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

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Data on CSHCN
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Data on CSHCN
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Data on CSHCN
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Data on CSHCN
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Data on CSHCN
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Data on CSHCN
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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