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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
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
         Congenital      Unintentiona    Unintentiona    Unintentiona    Unintentiona
  1      Anomalies         l Injury        l Injury        l Injury        l Injury
                          Congenital      Malignant       Malignant      Homicide &
  2    Short Gestation
                          Anomalies       Neoplasms       Neoplasms       Legal Int.

                         Homicide &       Congenital
  3        SIDS
                          Legal Int.      Anomalies
                                                           Suicide         Suicide

         Maternal         Malignant      Homicide &      Homicide &       Malignant
  4    Complications      Neoplasms       Legal Int.      Legal Int.      Neoplasms
        Respiratory
                                                          Congenital
  5      Distress
        Syndrome
                         Heart Disease   Heart Disease
                                                          Anomalies
                                                                         Heart Disease

       Placenta Cord     Pneumonia &     Pneumonia &                      Congenital
  6     Membranes          Influenza       Influenza
                                                         Heart Disease
                                                                          Anomalies
                                          Bronchitis      Bronchitis      Bronchitis
          Perinatal
  7      Infections
                          Septicemia     Emphysema
                                           Asthma
                                                         Emphysema
                                                           Asthma
                                                                         Emphysema
                                                                           Asthma
       Unintentional       Perinatal       Benign        Pneumonia &     Pneumonia &
  8       Injury            Period        Neoplasms        Influenza       Influenza
Leading Causes of Death: By age
RANK        <1              1-4             5-9           10-14           15-24
         Congenital      Unintentiona    Unintentiona    Unintentiona    Unintentiona
  1      Anomalies         l Injury        l Injury        l Injury        l Injury
                          Congenital      Malignant       Malignant      Homicide &
  2    Short Gestation
                          Anomalies       Neoplasms       Neoplasms       Legal Int.

                         Homicide &       Congenital
  3        SIDS
                          Legal Int.      Anomalies
                                                           Suicide         Suicide

         Maternal         Malignant      Homicide &      Homicide &       Malignant
  4    Complications      Neoplasms       Legal Int.      Legal Int.      Neoplasms
        Respiratory
                                                          Congenital
  5      Distress
        Syndrome
                         Heart Disease   Heart Disease
                                                          Anomalies
                                                                         Heart Disease

       Placenta Cord     Pneumonia &     Pneumonia &                      Congenital
  6     Membranes          Influenza       Influenza
                                                         Heart Disease
                                                                          Anomalies
                                          Bronchitis      Bronchitis      Bronchitis
          Perinatal
  7      Infections
                          Septicemia     Emphysema
                                           Asthma
                                                         Emphysema
                                                           Asthma
                                                                         Emphysema
                                                                           Asthma
       Unintentional       Perinatal       Benign        Pneumonia &     Pneumonia &
  8       Injury            Period        Neoplasms        Influenza       Influenza
Children with Special Needs

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

      6%   6%    Mod/sev functional limitations

   13%     13%      MCHB definition

 30%       30%          Any occurrence
Conditions with Increases in
         Prevalence
        1980s-2000s
 – Asthma          – IBD
 – Obesity         – Leukemia
 – Depression      – Diabetes
 – ADHD            – CHD
                   – Autism
Increases in Prevalence
                     (courtesy Jim Perrin)



16%
14%
12%
10%
 8%
 6%                                           early 1980s
 4%                                           mid 1990s
 2%
 0%
        Obese      Extreme    Asthma   ADHD
      (>95%ile)    Obesity
                  (>99%ile)
    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     • HIV
  Disease              • Down Syndrome
• Leukemia
• Cystic Fibrosis
• Sickle Cell Anemia
• Spina Bifida
• Cerebral Palsy
              Survival to Age 20
       100

        75
Percent                                                            1980s
         50
survival                                                           2000s
        25

         0
              ia




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                                                     Si
                                         D
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
  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
                                                Community-
                                                Based Team

        Insurance
    providers/financial
         resources              Social Services       Religious /spiritual
                             includes mental health        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%
                               >five
                               five
     9%                        four
                    48%
                               three
                               two
      15%                      one

             9%
                            Trends in US Immigration
                            10                                                                               12

                            9
                                                                                                             10
                            8




                                                                                                                  Rate (per 1,000 people)
                            7
     Number (in millions)




                                                                                                             8
                            6

                            5                                                                                6

                            4
                                                                                                             4
                            3

                            2
                                                                                                             2
                            1

                            0                                                                                0
                                00

                                        10

                                                20

                                                        30

                                                                40


                                                                        50

                                                                                60

                                                                                        70

                                                                                                80

                                                                                                        90
                                                                                                                 Number
                             19

                                     19

                                             19

                                                     19

                                                             19


                                                                     19

                                                                             19

                                                                                     19

                                                                                             19

                                                                                                     19
                                                                     Year                                        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

				
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