PEDIATRICS Vol. 119 No. 4 April 2007, pp. e866-e874 (doi:10.1542/peds.2006-1729)
ARTICLE |
Preterm BirthAssociated Cost of Early Intervention Services: An Analysis by Gestational Age
a Center for Community Health, Massachusetts Department of Public Health, Boston, Massachusetts
b Healthcare Administration Program, School of Business, University of Houston-Clear Lake, Houston, Texas
| ABSTRACT |
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OBJECTIVES. Characterizing the cost of preterm birth is important in assessing the impact of increasing prematurity rates and evaluating the cost-effectiveness of therapies to prevent preterm delivery. To assess early intervention costs that are associated with preterm births, we estimated the program cost of early intervention services for children who were born in Massachusetts, by gestational age at birth.
METHODS. Using the Pregnancy to Early Life Longitudinal Data Set, birth certificates for infants who were born in Massachusetts between July 1999 and June 2000 were linked to early intervention claims through 2003. We determined total program costs, in 2003 dollars, of early intervention and mean cost per surviving infant by gestational age. Costs by plurality, eligibility criteria, provider discipline, and annual costs for children's first 3 years also were examined.
RESULTS. Overall, 14033 of 76901 surviving infants received early intervention services. Program costs totaled almost $66 million, with mean cost per surviving infant of $857. Mean cost per infant was highest for children who were 24 to 31 weeks' gestational age ($5393) and higher for infants who were 32 to 36 weeks' gestational age ($1578) compared with those who were born at term ($725). Cost per surviving infant generally decreased with increasing gestational age. Among children in early intervention, mean cost per child was higher for preterm infants than for term infants. At each gestational age, mean cost per surviving infant was higher for multiples than for singletons, and annual early intervention costs were higher for toddlers than for infants.
CONCLUSIONS. Compared with their term counterparts, preterm infants incurred higher early intervention costs. This information along with data on birth trends will inform budget forecasting for early intervention programs. Costs that are associated with early childhood developmental services must be included when considering the long-term costs of prematurity.
Key Words: early intervention gestational age cost analysis prematurity educational intervention
Abbreviations: EIearly intervention GAgestational age PELLPregnancy to Early Life Longitudinal
Infants who are born preterm are at increased risk for medical and developmental morbidity.110 Associated costs impose a significant burden on multiple sectors of the US economy and include long-term hospital, outpatient medical, developmental, and educational expenses. As highlighted in a recent Institute of Medicine report, neonatal and postneonatal medical costs that are associated with low birth weight and preterm birth have been described, but data pertaining to developmental and educational costs that are associated with preterm birth are sparse, especially for the child's first 3 years.11 A full characterization of all costs is necessary when evaluating the cost-effectiveness of preterm delivery prevention therapies and when estimating the impact that increasing preterm birth rates and extreme preterm survivorship will have on future expenditures. This study provides the first population-based estimates of the costs of infant and toddler developmental services for preterm children.
Neonatal and postneonatal hospital and outpatient costs that are associated with preterm birth and, related, low birth weight have been well characterized. Estimates of neonatal inpatient costs for children who are born preterm range from approximately $11000 to $18000 (2003 dollars) per birth, compared with $1300 to $1900 (2003 dollars) per term birth.1214 Rogowski et al15 estimated the cost of rehospitalizations and outpatient care during the first year for preterm infants who are born <1500 g to be approximately $8000 (1987 dollars) per child. Lewett et al16 estimated that each low birth weight child costs an average of approximately $290 in 1998 dollars more than a higher birth weight child for inpatient medical care during the preschool years.
Over the long term, preterm children are more likely than their term counterparts to have neurodevelopmental impairment in multiple domains, including cognitive,46,17 sensory,79 and motor impairment,10 thereby accruing excess expenses related to developmental and educational services. Children who are 3 years and older and have disabilities are ensured public education that emphasizes special education and related services through part B of the Individuals With Disabilities Education Act of 1997. Two studies examined special education costs as a result of preterm birth for children who were 3 years and older, with the incremental cost estimated to be $1240 (19891990 dollars) to $2237 (2005 dollars) per child.11,18
To date, developmental and educational costs for former preterm infants during the first 3 years of life have not been described. Infants and toddlers who have developmental delay or an established disability or, in some states, are at risk for a delay are eligible for early intervention (EI) services as mandated under part C of the Individuals With Disabilities Education Act of 1997. State-coordinated EI programs provide services that enhance physical, cognitive, communication, social/emotional, and/or adaptive development.19 The aim of this study was to estimate the cost of EI services in a population-based cohort, by gestational age (GA) at birth.
| METHODS |
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Data Source
Data for these analyses were derived from the Pregnancy to Early Life Longitudinal (PELL) data system. PELL is a publicprivate partnership among the Boston University School of Public Health, Massachusetts Department of Public Health, and the Centers for Disease Control and Prevention, the funding agency. The core PELL database consists of linked Massachusetts birth certificate, death certificate, and birth-related hospital discharge data from 19982003 births for both mothers and infants. Details of PELL linkage methods are presented elsewhere.20
Core PELL records for the 80177 in-state, resident births that occurred during fiscal year 2000, July 1, 1999, through June 30, 2000, were linked to EI program and claims data from 16949 children who were born during this period and received EI services. Overall, 15157 (89.4%) EI program records linked back to a record in the core PELL data set. Of these, 14446 (95.3%) had
1 claim in the data set. For analysis, records were stripped of name, address, and other identifying information, and a data use and confidentiality agreement was completed with the Massachusetts Department of Public Health to perform the current analyses.*
Variables
Birth Characteristics
The date of last menstrual period and clinical estimate of GA were recorded on the birth certificate. We defined GA as the number of weeks from last menstrual period when this value was valid according to Alexander's criteria.21 Otherwise, GA was defined as the clinical estimate of weeks' gestation. Valid GA between 24 and 42 weeks were available for 77034 (96.1%) of the 80177 Massachusetts births and for 14033 (97.1%) of the 14446 with
1 claim. GA was categorized further as very preterm (2431 weeks), moderately preterm (3236 weeks), and term (3742 weeks). Plurality was calculated using methods that were developed by Lazar et al22 and was categorized as singleton or multiple birth. Time to death was calculated from date of death as recorded on the death certificate and date of birth from the birth certificate. Neonatal death was defined as death that occurred 0 to 28 days from birth.
EI
A child was classified as receiving EI services when he or she had
1 EI claim in the data set. In most cases, there was a separate claim in the data set for each service encounter. The claim record included the date of the encounter, service type, discipline of the service provider, length of the encounter, and charge. Types of services that were included in the data set were screenings (an initial visit during which EI staff obtain preliminary information from the family of the child who is referred to the program to determine whether the child is likely to be eligible for services), intake assessments (an evaluation to determine whether the child is eligible for services), ongoing assessments (periodic reevaluations to determine developmental progress and continued need for services), and provision of developmental services. A proportion of the children who were classified as receiving services received only a screening (7%) or a screening and intake assessment (22%) but did not go on to receive developmental services. Disciplines of the service providers included developmental specialists, social workers, physical therapists, occupational therapists, speech/language pathologists, nurses, psychologists/counselors, and autism service providers. Additional description of assessment and service provision in the Massachusetts EI program is presented elsewhere.20 Hourly rates varied according to the type and the setting of the service, ranging from $21 for a child group to $98 for an intake assessment. Hourly rates did not vary according to the discipline of the provider. Individual claims were not available for autism services, which were used by 2.3% of the children in EI and constituted 7.8% of total costs. For these services, only the total program costs per child for the entire time in EI were available. Charges data were not available for vision or hearing services, used by 0.5% of EI participants. Claims data were examined routinely by the EI fiscal manager for accuracy and completeness and were reviewed periodically by external auditors (Steve McCourt, MHA, verbal communication, 2006).
EI programs were reimbursed 100% for each charge by private health insurance, Medicaid, or state funds according to rates that were fixed yearly by the state. Charges therefore represent the full cost to the government and third-party insurers but may not reflect the provider's true cost of providing services. Nevertheless, charges are used to estimate costs in this analysis, and the costs reported are expenditures of the Massachusetts EI program. Costs were converted to 2003 constant dollars using the Medical Care component of the Consumer Price Index. Dates of service were not available for autism services. We assumed that autism services were split evenly among the years in which the child was enrolled in EI. We then converted those costs that were assumed to have occurred before 2003 into 2003 constant dollars.
Claims data did not include reimbursements that totaled approximately $2.5 million per year and were paid to EI programs from state and federal funds to cover travel expenses that were incurred by parents. Claims also did not include a total of approximately $800000 in state and federal funds that were awarded yearly to assist programs with administrative expenses (Robert Seymour, BS, written communication, 2006).
Additional EI program data were available in the data set. For these analyses, we included results from the intake assessment that was conducted to determine eligibility. Massachusetts EI defines eligibility as meeting 1 of 4 broad eligibility criteria as documented on the evaluation record corresponding to the first referral: (1) diagnosis with a disabling physical or mental condition referenced by 1 of 197 International Classification of Diseases, Ninth Revision codes, (2) a 25% delay behind chronological age in 1 of 7 areas of functioning (gross motor, fine motor, cognitive, receptive language, expressive language, social/emotional, or adaptive functioning) as determined by a standardized developmental assessment, (3) presence of 4 or more of 18 defined biological and environmental risk factors that are associated with delay, and (4) determination by a multidisciplinary team that the child has questionable quality of developmental skills and functioning.
To characterize type and severity of participants' conditions, we categorized children into 6 eligibility groups:
- Clinical judgment: having no developmental delay or medical condition, 0 to 3 risk factors, but clinical judgment of need for services
- At risk: having 4 or more risk factors for delay but no developmental delay or medical condition
- Mild/moderate developmental delay: having a developmental delay in
1 domain, none of which exceed 50% of chronological age; no medical condition; and 0 to 3 risk factors
- Severe developmental delay: having a developmental delay of 50% or more behind chronological age in
1 domain, no medical condition, and 0 to 3 risk factors
- Established condition: having a medical condition, no developmental delay, and 0 to 3 risk factors
- Multiple criteria: meeting 2 or more of the criteria.
Analysis
For analysis, we included live in-state births of infants who were born at 24 to 42 weeks' GA to Massachusetts resident women. Costs were calculated for the infants who survived to 28 days of age. We present total program costs, mean cost per surviving infant, and mean and median cost per participant, by GA. Total program cost, mean cost per surviving infant, and mean cost per participant for each GA category are presented by plurality, and total program cost and cost per surviving birth also are presented for each GA category by discipline of service provider, eligibility category, and year of life.
| RESULTS |
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Overall, 77034 children were born in Massachusetts to resident women from July 1, 1999, through June 30, 2000, with a GA of 24 to 42 weeks; 76901 survived to 28 days. Of births, 14033 (18.2%) received EI services. Selected infant and maternal characteristics of Massachusetts births and children who received EI services are presented in Table 1. Table 2 presents the number of live births at each GA, along with the number of infants who survived to 28 days and the number and percentage who received EI services, by GA. Overall, 1.2% of births were very preterm, 8.7% were moderately preterm, and 90.1% were term. The percentage of infants who received services was highest among infants who were born at <32 weeks' GA and also was elevated among moderately preterm infants compared with term infants.
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The total program cost of EI services for children who were born during the study period was almost $66 million. Table 3 presents program costs, mean cost per surviving infant by GA, and mean and median EI cost per participant, by GA. Term births comprised the large majority of births and incurred >75% of total EI program costs. Sixteen percent of costs were incurred by moderately preterm births, and 8% of costs were incurred by very preterm births. The mean cost per surviving infant for EI services for an infant who was born very preterm was >7 times that of a term infant; the mean cost per moderately preterm birth was more than twice the cost per term birth. From 27 to 40 weeks' GA, cost per surviving infant decreased with increasing GA. Among those who received EI services, the mean and median costs per child were highest for those who were born very preterm and lowest for those who were born at term, although the difference in cost per participant between the 2 groups was not as large as the difference in cost per birth between the 2 groups.
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Overall, EI program cost for singleton births was more than $59 million and for multiple births was almost $7 million. Term infants comprised >80% of the program cost of singleton births. In contrast, only 28% of costs of multiples were for term births and 72% were for preterm births. Among both singletons and multiples, the mean cost per surviving infant was highest among very preterm infants and also higher among the moderately preterm infants compared with term infants. In all GA categories, the mean cost per multiple birth was higher than the mean cost per singleton birth. Among participants, overall mean cost per multiple infant was >10% higher than mean cost per singleton. For very preterm and term births, the mean cost per multiple birth was higher than the mean cost per singleton birth, whereas for moderately preterm births, the mean cost per singleton birth was 15% higher than the mean cost per multiple birth (Table 4).
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EI participants qualified for services in the following eligibility criteria: 4% were at risk for delay, 46% had mild/moderate developmental delay, 26% had severe developmental delay, 16% had multiple criteria, 5% were eligible by clinical judgment, and 2% had an established condition. Total program costs were as follows: $1984543 for the at-risk group, $23118297 for the mild delay group, $20109100 for the severe delay group, $14824667 for the multiple criteria group, and $4142600 for the other group. Costs that were incurred by preterm births comprised 32% of total program costs in the at-risk group, 17% in the mild/moderate delay group, 20% in the severe delay group, 40% in the multiple criteria group, and 16% in the other criteria group. Overall, mean cost per surviving birth ranged from $26 for the at-risk group to $301 for the mild/moderate developmental delay group. Figure 1 presents mean program costs per surviving infant by eligibility group.
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Total program costs varied according to the discipline of the service provider: $17224175 was spent on services that were provided by developmental specialist/educators, $4638012 by autism providers, $5456834 by social workers, $8538900 by physical therapists, $10247007 by occupational therapists, $13348414 by speech language pathologists, $3636593 by nurses, and $2671908 by psychologist/counselors. Services for preterm infants ranged from 11% of total program costs for services from autism providers to 35% for services from physical therapists. Cost of services from each provider per surviving infant was highest for children who were born very preterm, although the differential between preterm and term differed by the discipline of the service provider. For services that were provided by a physical therapist, cost per very preterm infant was almost 14 times the cost per term infant. In contrast, the cost per very preterm infant for services that were provided by specialty services providers were less than twice the cost per term infant (Fig 2).
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Table 5 presents EI program costs for each of the first 3 years of life. EI program costs ranged from approximately $7 million in the first year of life to more than $40 million in the third year of life. Third-year costs were substantially higher than first- and second-year costs for both preterm and term infants. During each of the first 3 years of life, children who were born at term accrued higher program costs than children who were born preterm. In each of the first 3 years of life, mean cost per surviving preterm infant was higher than the mean cost per surviving term infant. In the first year, the mean cost per birth for very preterm infants was >22 times the mean cost per birth for term infants, whereas during the third year, the mean cost per surviving preterm infant was <5 times the mean cost per surviving term infant.
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| DISCUSSION |
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Whereas medical costs that are associated with preterm infants have been well described, data concerning long-term developmental and educational costs are more sparse, with available estimates limited to those that are derived from survey data and to costs that are incurred after age 3. Moreover, the available data concerning special education costs are described by birth weight rather than GA.17 This study used claims data to describe the cost of EI services from birth to age 3 in a cohort of infants who were born in Massachusetts. The large sample size allowed detailed examination of the costs by GA.
Overall, more than $15 million was spent on EI services in Massachusetts for children who were born during a 1-year period at <37 weeks' GA. For EI services that were provided during 3 years, each preterm infant cost almost $2000, approximately $1200 higher than the cost per term infant. The incremental cost of EI services for each preterm infant was approximately one seventh that of neonatal hospital care and less than one half the incremental cost of special education costs for school-aged children.1216,18
As expected given the considerable morbidity that is associated with extremely preterm birth,23 the EI cost per infant who survived the neonatal period was highest among those who were born at the lowest GAs. We also found elevated costs per surviving infant for moderately preterm infants (those born at 34 to 36 weeks' GA). These data are consistent with those of others who have found increased morbidity and costs associated with moderately preterm birth.13,14 From 27 to 40 weeks' GA, EI costs per surviving infant continually decreased as GA increased. These results suggest that interventions that successfully delay preterm delivery for even 1 week should result in future EI savings.
Although a higher percentage of children who were born preterm received EI services and the EI cost per surviving infant was higher for preterm births than for term births, preterm infants accounted for only 17% of EI participants. Therefore, the majority of children in EI and the majority of EI program costs were incurred by children who were born at term, with EI costs for these children >3 times the costs for preterm infants. To our knowledge, EI costs for term infants have not been reported previously and are worthy of additional study. In Massachusetts, that the largest costs are for term infants likely reflects that a large proportion of children who receive EI services are enrolled after age 1 because of a language delay but have no risks identified earlier. Nevertheless, in the past decade, the percentage of preterm births has increased
20% in Massachusetts and nationwide.23,24 If this trend continues, then the distribution of program costs by GA may change such that costs that are incurred by preterm infants will constitute a greater proportion of program costs.
In addition to filling a gap in the published data regarding the long-term cost of preterm birth, these cost estimates are useful to the state and to individual EI programs. Our study provides estimates by GA both of EI costs per surviving infant and per program participant. Costs per birth are useful to the state in anticipating future EI budgets given the percentage of the population that is born preterm. EI costs per participant are useful to individual programs for budgeting as well as for quality assurance purposes, because individual programs can compare resources that are spent on each participant who is born preterm to expenditures per preterm participant in the state overall. Ongoing analysis, using population-based data, of trends in birth rates and EI participation by GA will assist further with more long-term budget planning. These data also will provide cost estimates for future cost-avoidance analyses.
In each GA category, twins and higher order multiples were more likely to receive EI services and incurred higher costs per infant than did singletons. Multiples also had higher costs than singletons when data were stratified by birth weight instead of GA (data not shown). Overall, infants from multiple births constituted nearly one quarter of all preterm infants. That at each GA each infant from a multiple birth incurred higher costs than his or her singleton peer has implications for planning future EI expenditures, because the rate of multiple births has increased almost 50% in the past decade in Massachusetts24 and
30% nationwide.25 If this trend continues, then the preterm birthassociated cost of EI will increase at a faster rate than would be expected given the increasing rates of preterm birth in general.
Not only did overall costs differ for preterm and term infants, but also the types of developmental morbidity, services provided, and associated costs differed by GA. More than one half of all very preterm infants in EI were eligible by multiple criteria and another 20% with a severe delay, reflecting the considerable morbidity that is associated with preterm birth. The morbidity that is associated with moderately preterm birth was somewhat less severe, with >40% of EI participants eligible with a mild to moderate delay. Term EI participants demonstrated the least severe morbidity, with almost one half eligible with a mild to moderate delay and only 13% eligible with multiple criteria.
The difference in mean cost per surviving birth between preterm and term infants was greatest for services that were provided by physical therapists, occupational therapists, and nurses, reflecting the increased physical disabilities and medical complications that are associated with preterm birth. For all services, however, the mean cost per birth was higher for preterm versus term infants, demonstrating the wide range of morbidity that is associated with preterm birth. It should be noted that the distribution of costs across service providers depends in part on the reimbursement rates set for each service.
In our population, the yearly cost of EI was highest for children who were aged 2 to 3 years, followed by children who were aged 1 to 2 years. This may be attributable largely to the fact that many toddlers were enrolled during their second and third years of life. Nevertheless, even among very preterm children, virtually all of whom were enrolled before 1 year of age,20 the highest costs were incurred during the third year of life. Most likely new delays emerged during the second and third years of life, particularly language delays.26,27 These data demonstrate that costs that are associated with preterm birth increase and continue long term.
Our results are subject to several limitations. We obtained GA from the birth certificate. Although the validity of GA as recorded on the birth certificate has been demonstrated in other states,28 Massachusetts has not validated birth certificate data against medical charts. To examine the robustness of our findings, we reanalyzed the data by birth weight and found the same patterns as when data were categorized by GA.
Claims data could be linked to GA data only for in-state births to resident mothers. Because the true cost of EI includes costs that are incurred by children who are born out of state and/or to mothers who were living out of state at the time of birth, these estimates underestimate total EI program costs. Furthermore, if GA-specific EI costs of children who were born out of state or to nonresident mothers were different from in our cohort, then our results may under- or overestimate the mean cost of EI per child. The error that results from unlinked EI claims records likely is minimal, however, because almost 90% of EI participants were members of the study population. Although in our data the charges are reimbursed in full and therefore represent costs that are incurred by government and third-party insurers, our estimates may underestimate the true cost of EI from the providers' perspective, because reimbursement rates for EI are fixed, and some providers claim that they do not reflect the true cost of providing services.
These estimates only included costs for developmental services that were provided by the state-coordinated EI program and did not include supplemental services that were received outside the program. The percentage of children who receive additional developmental intervention is not known, although it is presumed to be low, because services that are provided within the program are comprehensive. Estimates did not include indirect costs to parents, such as time taken off from work. Most services were provided in naturalistic settings such as at home or a child care facility, minimizing parents' time away from work. Nevertheless, parents may have incurred some costs related to time spent with program staff.
Massachusetts EI serves a higher percentage of the population than most other states, in part because of the state's relatively inclusive eligibility criteria. Unlike some states, Massachusetts enrolls children who are at risk for delay in addition to children with established delays or disabilities. Moreover, the state's definition of developmental delay, 25% behind chronological age, is more liberal than many other states' requirement of 30% to 50% delay.29 The estimate of cost per surviving infant presented here therefore may be higher than costs that are incurred by other states. We presented costs for children who were eligible with differing eligibility criteria. Costs of EI in states with more restrictive eligibility criteria may resemble more closely the costs that are incurred by the severe delay, established condition, and multiple criteria groups. In addition to the state's inclusive eligibility criteria, Massachusetts has a relatively high percentage of families with health insurance,30 which may lead to greater EI program awareness through improved health care access and subsequently higher EI program costs compared with other states. Massachusetts's child find activities have been shown to be very effective in identifying high-risk infants,20 which also may contribute to higher EI service use and costs in Massachusetts than in other states. Costs presented here also may differ from those of other states because of differences in third-party reimbursement. Massachusetts has extensive third-party reimbursement for EI services. In other states, some services may be provided outside the auspices of the program to ensure third-party reimbursement. Furthermore, cost of developmental services may vary by geographic region. Health care and educational costs in the Northeast typically are higher than in other regions of the United States.31,32
The results presented here are limited to descriptive analysis. It cannot be determined, therefore, to what extent preterm birth per se, as opposed to a higher prevalence of certain medical conditions among preterm infants, is responsible for elevated EI costs among preterm infants. Use of multivariate models to examine birth characteristics that predict future EI expenditures will help to answer that question and will be the focus of future research.
| CONCLUSIONS |
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Despite technologic advances, preterm birth continues to be associated with considerable medical, developmental, and educational costs. Our findings fill a previous gap in the description of preterm birthassociated costs that are incurred during early childhood. Understanding the full spectrum of costs that are associated with preterm birth will provide valuable information on the societal savings to be gained in the prevention of preterm births.
| ACKNOWLEDGMENTS |
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The PELL data system is supported by the Centers for Disease Control and Prevention grants S1887-21/23 and S3485-23/23. Additional funding for EI program evaluation was provided by US Department of Education Early Intervention grant 45139021.
We thank Jean Shimer, Cynthia Wisniewski, Stephen Evans, and Mark McLaughlin for preparing the data sets and Milton Kotelchuck, Ron Benham, Marie McCormick, and Lynne McIntyre for reviewing the manuscript.
| FOOTNOTES |
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Accepted Oct 16, 2006.
Address correspondence to Karen Clements, ScD, Massachusetts Department of Public Health, Center for Community Health, 250 Washington St, 5th Floor, Boston, MA 02108. E-mail: karen.clements{at}state.ma.us
The authors have indicated they have no financial relationships relevant to this article to disclose.
* The authors linked birth, death, and hospital discharge data with EI program data to conduct this study on behalf of the Massachusetts Department of Public Health's Early Intervention Program. Personally identifiable information that is received by the EI program is protected under the provisions of the Individuals with Disabilities Education Act, which adopts the privacy protections of the Family Educational Rights and Privacy Act (20 USC
1232g and 34 CFR Part 99). Under these laws, parental consent is not required to disclose identifiable data to an organization that is conducting a study for or on behalf of the EI program. The use of EI program data for this study was permissible under these laws because the authors conducted the study on behalf of the EI program and destroyed direct identifiers from the analytic file once the linkage was completed. ![]()
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