Medically Involved Infants in the Early Intervention Program: Implications for Policy

1. Medically Involved Infants in the Early Intervention Program: Implications for Policy Roy Grant MA1 Molly Nozyce PhD2 (1) The Children’s Health Fund (2) Jacobi Medical Center New York, New York

2. Early Intervention (EI) Program • Authorized under Part C of the Individuals with Disabilities Education Act (IDEA) • Entitlement to developmental screening, evaluation and services for infants and toddlers birth to 36 months of age • Focus on infants – earliest identification and referral for developmental delay

3. Early Intervention (EI) Program, 2 • Eligibility is based on developmental status OR • Diagnosis of a medical condition with a high probability of developmental delay • Pediatricians and other health care providers are “primary referral sources” required to refer infants and toddlers with suspected developmental delay to their local EI Program

4. Early Intervention (EI) Program, 3 • EI evaluations and services are generally provided at home or community settings, rarely in hospitals or other health facilities • EI providers are generally not affiliated with health care systems or networks • This situation frequently leads to fragmentation of developmental intervention from health care services – even if a pediatrician made the developmental referral

5. Goals of this study • Describe medical issues affecting infants and toddlers referred by their pediatrician for EI evaluation • Describe developmental status of referred infants and toddlers • Discuss implications of these findings for EI programs and policy • Discuss implications of these findings for pediatric practices

6. Outline of the study • Cohort: 575 infants and toddlers consecutively evaluated following pediatrician referral to determine EI eligibility • Setting: a NYC tertiary care teaching hospital • Methods: chart review; consultation with referring pediatricians; coded data analyzed in SPSS • Consistent multi-disciplinary evaluation protocol • Included neurodevelopmental assessment; testing with norm-referenced instruments unless contra-indicated; social work assessment; informed clinical opinion • Comparison later made for a subset of this cohort with similarly referred patients evaluated at a community hospital

7. Tertiary care hospital cohort:demographics (N=575) • Mean age at evaluation: 20 months (range, 2 – 35 months) • Gender: male, 62%; female: 38% • Poverty: 66% at or below FPL • Defined as median household income for zip code of residence at or below federal poverty level (FPL) based on U.S. Census Bureau data • Medicaid not a reliable proxy in this population because of “special needs” eligibility status independent of income eligibility

8. Age distribution

9. Tertiary care cohort results: medical involvement • Medically involved: 57% • Prematurity: 16% • Genetic syndrome / inborn metabolic disorder: 11% • Organ system anomaly: 13% • Neurological disorder: 16% • Infectious disease: 2% • More common medical conditions were excluded, e.g., otitis media, asthma, pneumonia

10. Medical involvement categories: examples • Prematurity: ~75% were “extreme” (gestation< 26 weeks and/or BW< 1000 g); perinatal morbidities included BPD, ROP, grade 3 or 4 IVH • Genetic syndrome / inborn metabolic disorder: Down, DiGeorge, Sotos syndromes / galactosemia, prune belly syndrome • Organ system anomaly: hypoplastic left heart, tetralogy of fallot, biliary atresia • Neurological disorder: epilepsy, cerebral palsy, microcephaly, sensorineural hearing loss • Infectious disease: congenital syphilis, meningitis, CMV

12. Medical involvement by age

13. Developmental status • Testing included Bayley Scales of Infant Development (BSID; N=490) and PT, OT, Sp-L evaluations as needed • 30% had a BSID Mental Development Index (MDI) >3 standard deviations (SD) below the mean • The mean MDI was >2 SD below the mean • Children in poverty households had a significantly lower mean MDI (p<0.05) • Children with [poverty and no medical involvement] had a lower mean MDI than children with [medical involvement and no poverty] (not significant) • 17% of children 18 months and older were diagnosed with autism spectrum disorder

14. Community comparison: method • To control for tertiary care sample bias, a subset was compared with a cohort of infants and toddlers referred by their pediatrician and evaluated at a community hospital • The tertiary care hospital was a regional pediatric surgery and transplant center • Multi-disciplinary evaluation protocol and data capture were similar • The tertiary care comparison subset was comprised of the most recently evaluated patients • Referral and evaluation period was matched for the two cohorts

15. Results: demographics (N=221) • Distribution: tertiary care cohort, n=128; community hospital cohort, n=93 • Neither gender nor age differed significantly between the two cohorts • Mean age=23 months • Significantly higher percentage of community hospital patients lived in poor households (85% to 68%, p<0.05)

16. Results: medical involvement and developmental status • Significantly lower overall degree of medical involvement in community hospital cohort (p<0.05) • However, the difference was not significant for age <18 months • Most frequent medical diagnosis: prematurity with perinatal morbidities • Significantly lower developmental status in community hospital cohort compared to tertiary care cohort (p<0.05)

17. Conclusions • Among infants and toddlers through18 months of age, there is a significant association between medical involvement and developmental delay • The most frequently occurring medical diagnosis is prematurity with perinatal morbidities • A wide range of serious medical conditions is associated with developmental delay among EI referred patients from a tertiary care hospital • Poverty is a major risk factor for delayed development, comparable in potential impact to biomedical risk factors

18. Implications for policy & practice: Early Intervention Programs • The special needs of medically involved infants and toddlers must be met when providing EI assessment and intervention • Examples: • Ensuring safe handling of medically fragile infants • Facilitating access to medical diagnoses, e.g., cerebral palsy, hearing loss • Government lead agencies for EI Programs should ensure that their EI workforce includes personnel specially trained to work with high-risk infants

19. Implications for policy & practice: coordination of care • Developmental intervention in EI Programs should be coordinated with medical care for these young children with special health care needs (CSHCN) • The “medical home” model was developed to describe optimal care for CSHCN • Elements of medical home include care that is comprehensive, coordinated, continuous, and culturally effective • Pediatrics. 2004;113(5):1545-1547 • EI service coordinators should ensure that CSHCN are engaged in a medical home

20. Implications for policy & practice: pediatric care • Developmental surveillance, screening, and EI referral should be integrated into pediatric care for high risk patients • Risk assessment should include both biomedical and psychosocial issues • Pediatricians and other health care providers should know EI procedures and become involved with their local EI Program • Recommended by American Academy of Pediatrics • Pediatrics. 1999;104(1 Pt 1):124-127

21. Direction for future research • In this study the typical degree of developmental delay was moderate to severe, suggesting the potential value of EI services in reducing long-term special care needs including long-term special education • This should be tested by conducting multi-site developmental outcome research with long-term follow-up • Establishing program efficacy and cost savings would greatly assist advocacy efforts to preserve and enhance public funding for EI Programs

22. Acknowledgment Other key participants in this study were • John Garwood MD, Chief, Developmental Pediatrics, Mount Sinai Medical Center, New York City • Elizabeth Kucera, PhD

23. For more information contact • Roy Grant MA, Director Applied Research & Policy Development The Children’s Health Fund 215 West 125th Street New York, NY 10027 http://www.childrenshealthfund.org/