chronic illness and disability in children and adolescents: implications for transition

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


Introduction Historical Context• Current Epidemiology • Current Needs• Medical and Educational


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


Introduction Historical Context Current Epidemiology Current Needs• Medical and Educational


Leading Causes of Death: By age RANK <1 1-4 5-9 10-14 15-24

1 Congenital Anomalies

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



Malignant Neoplasms

5Respiratory

Distress Syndrome

Heart Disease Heart DiseaseCongenital Anomalies

Heart Disease

6 Placenta Cord Membranes

Pneumonia & Influenza


Heart DiseaseCongenital Anomalies

7 Perinatal Infections

SepticemiaBronchitis

Emphysema Asthma

Bronchitis Emphysema

Asthma

Bronchitis Emphysema

Asthma

8 Unintentional Injury

Perinatal Period

Benign Neoplasms



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


Introduction Historical Context Current Epidemiology Current Needs Medical and Educational


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


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


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


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.


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


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.


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.


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

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

chronic illness and disability in children and adolescents: implications for transition

Documents

congenital anomaliesmedicines

department of pediatrics

chronic illnessesfew

age rankchildren

division of general

syndromejra conditions

prevalence of cshcn13

s spina bifida