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

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

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

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

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

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

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

Age distribution

25%

17%

24%

34% 2-12 mos

13-18 mos

19-24 mos

25-35 mos

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

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

Probability of being medically involved as a function of age and gender, birth to 30 months

(age/medical involvement association significant, p<0.01)

0

0.2

0.4

0.6

0.8

1

Age (Months)

Prob

abili

ty

P(mi|male)

P(mi|female)

Medical involvement by age

88%

71%

43%37%

0%

20%

40%

60%

80%

100%

2-12 mos

13-18 mos

19-24 mos

25-35 mos

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

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

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)

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)

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

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

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

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

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

Acknowledgment

Other key participants in this study were

John Garwood MD, Chief, Developmental Pediatrics, Mount Sinai Medical Center, New York City

Elizabeth Kucera, PhD

For more information contact

Roy Grant MA, DirectorApplied Research & Policy DevelopmentThe Children’s Health Fund215 West 125th StreetNew York, NY 10027

http://www.childrenshealthfund.org/