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

s 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 21 st 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< Congenital Anomalies Unintentiona l Injury 2 Short Gestation Congenital Anomalies Malignant Neoplasms Homicide & Legal Int. 3 SIDS Homicide & Legal Int. Congenital Anomalies Suicide 4 Maternal Complications Malignant Neoplasms Homicide & Legal Int. Malignant Neoplasms 5 Respiratory Distress Syndrome Heart Disease Congenital Anomalies Heart Disease 6 Placenta Cord Membranes Pneumonia & Influenza Heart Disease Congenital Anomalies 7 Perinatal Infections Septicemia Bronchitis Emphysema Asthma 8 Unintentional Injury Perinatal Period Benign Neoplasms Pneumonia & Influenza

Leading Causes of Death: By age RANK< Congenital Anomalies Unintentiona l Injury 2 Short Gestation Congenital Anomalies Malignant Neoplasms Homicide & Legal Int. 3 SIDS Homicide & Legal Int. Congenital Anomalies Suicide 4 Maternal Complications Malignant Neoplasms Homicide & Legal Int. Malignant Neoplasms 5 Respiratory Distress Syndrome Heart Disease Congenital Anomalies Heart Disease 6 Placenta Cord Membranes Pneumonia & Influenza Heart Disease Congenital Anomalies 7 Perinatal Infections Septicemia Bronchitis Emphysema Asthma 8 Unintentional Injury Perinatal Period Benign Neoplasms Pneumonia & Influenza

Children with Special Needs No comprehensive catalogue of chronic illness and disability until Gortmaker and Sappenfeld in 1984

Conditions with Increases in Prevalence 1980s-2000s –Asthma –Obesity –Depression –ADHD –IBD –Leukemia –Diabetes –CHD –Autism

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

Racial Disparities in Survival

Survival Low Birth Weight and Prematures Increased survival rate of low birth weight infants 50% in % 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 Insurance Ages 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, % 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

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)

Trends in US Immigration Source: US Census Bureau. Statistical Abstract of the United States: The National Data Book. 120 th 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 Rockville, Maryland: U.S. Department of Health and Human Services, 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