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* Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina
SRI International, Menlo Park, California
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Methods. A nationally representative sample of 2586 parents in 20 states completed a 40-minute telephone interview on or near their child’s third birthday. This article summarizes data related to perceived family outcomes at the end of early intervention.
Results. At the end of early intervention, most parents felt competent in caring for their children, advocating for services, and gaining access to formal and informal supports. They also were generally optimistic about the future. Most (82%) parents believed that their family was better off as a result of early intervention. Parents were somewhat less positive in their perceived ability to deal with their child’s behavior problems or gain access to community resources, and lower family outcome scores were found for parents of minority children, children with health problems, and children who were living with a single adult.
Conclusion. Results suggest that Part C early intervention provides important supports for families of young children with disabilities. The findings reinforce the need for experimental research to identify factors that are most likely to lead to successful outcomes for all families. In the meantime, early identification and expeditious referral are important so that maximum benefit can be realized for children with disabilities and their families.
Key Words: early intervention • family impact
Abbreviations: IFSP, Individual Family Service Plan • NEILS, National Early Intervention Longitudinal Study • FOI, Family Outcome Index
Since the passage of Public Law 99–457 (now Part C of the Individuals With Disabilities Education Act) in 1986, the United States has had a policy of providing services for infants and toddlers with disabilities and their families. Guided by federal legislation but under the administrative authority of states, early intervention begins as soon as the child has been identified with an established medical condition, a developmental delay, or, in some states, any number of risk conditions (eg, low birth weight) that are likely to lead to a developmental delay. Early intervention provides specialized instruction and related services (eg, speech therapy, physical therapy, occupational therapy), often in the context of a home visiting program.1 Services are guided by an Individual Family Service Plan (IFSP) developed jointly by parents and service providers.2 Pediatricians play an important role in the identification and referral of children with disabilities to early intervention programs and as participants on the multidisciplinary team that conducts developmental assessments, determines goals for treatment, and coordinates services.3
A primary argument for early intervention has been its potential to reduce the negative effects of a disabling condition or risk factor and to promote optimal development over time. Systematic reviews of the efficacy literature consistently conclude that early intervention results in significant benefits for children.4–8 However, early intervention is not just for children. In fact, an early study of pediatricians’ perceptions of the effectiveness of early intervention found that although pediatricians believed that early intervention could result in at least modest effects on children’s development and function, its potential to help families was perceived to be more substantial.9
A large body of literature demonstrating the challenges experienced by families of children with disabilities and the need for family support as integral to any early intervention endeavor now exists.10–16 Reflecting the acknowledged role of families in planning services and the potential consequences for families of having a child with a disability, Part C replaced the Individualized Education Program for children aged 3 to 21 with the IFSP for infants and toddlers with disabilities and their families. To develop the IFSP, the early intervention team must involve families in identifying their children’s abilities and needs and incorporate a "family-directed" assessment of family resources, priorities, and concerns. When the family desires, the plan must address family needs as well as child needs. A service coordinator must be identified, with responsibility for helping families implement the plan and coordinate with other agencies and individuals. Families must be informed of their rights, be a part of the IFSP team, and receive a review of the IFSP at least every 6 months.
By what standards should the effects of early intervention for families be evaluated? Different answers to this question have been offered as a function of varying conceptual models or frameworks for viewing the impact of disability on a family. For example, a disability can disrupt infant communication patterns, making it difficult for some parents to interpret their child’s cues and respond appropriately.17 Early intervention could help parents learn to read their child’s communicative signals and interact in more developmentally facilitative ways. Indicators of a successful intervention could include the extent to which parents modified their behavior in accordance with their child’s needs and whether such alterations had an effect on infant behavior or development.18 Alternatively, a child’s disability may be associated with significant stress for some family members, interfering with normal family routines, altering life expectations, and forcing family members to deal with challenging behavior or the frustrations inherent in trying to gaining access to comprehensive and appropriate services.16 Early intervention could help by providing support for families, building informal and formal support systems, and helping families learn strategies for advocating for their children. Indicators of a successful intervention could include the extent to which family members are optimistic about the future or feel "empowered" as agents of change or as advocates for their children.19
Neither of these models (helping parents be better teachers vs helping families build strong support networks) adequately reflects the full range of family needs or the full range of family support options. In reality, early intervention should respond to varying family circumstances through individualized services that are designed to support the identified needs of families in ways that are consistent with each family’s values and priorities.20–24 Although several studies have investigated aspects of the effectiveness of early intervention for families, all suffer major limitations. Studies to date have typically focused on a single domain (eg, parent satisfaction, parent teaching skills, stress), have not incorporated representative samples of sufficient size to warrant generalization, and typically have failed to assess family outcomes at a consistent point in time. This article addresses each of these limitations as part of a study of a nationally representative sample of families and children who have disabilities and participated in the nation’s early intervention program under Part C. A report of families’ experiences as they began early intervention indicated that the beginning of early intervention was highly successful.25 The current article summarizes family outcomes on the basis of interviews that were conducted with a primary caregiver around the child’s third birthday. All families had completed or were about to complete participation in early intervention, which typically ends at 36 months of age. The article has 3 aims: (1) to describe the outcomes reported by families after their experience with early intervention programs, (2) to determine family perceptions of the impact of early intervention on families, and (3) to assess the extent to which selected child and family characteristics were associated with variability in outcome attainment or perceived impact of early intervention on families.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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36 months of age, the time of transition to special education services for eligible children provided by public schools.
Participants
A 3-stage stratified sampling procedure was used to identify the original sample for the study. A detailed description of the sampling strategy and the weighting procedures to ensure that the sample adequately represents the national population has been provided previously.26 Twenty states were selected on the basis of the number of children served in early intervention and the region of the country. These states represented considerable variation with regard to the state agency in charge of early intervention programs and whether they served children at risk. (Part C requires that participating states serve children with documented developmental delays or "established conditions" [eg, Down syndrome] that will lead to a developmental delay or disability. States have the option of serving "at-risk" children and have considerable latitude in determining what constitutes risk.)
The second stage involved the selection of counties on the basis of the estimated number of children served in Part C programs. Within each state 3 to 7 counties were selected, for a total of 93 counties. The third stage involved selection of the children and families. Between September 1997 and November 1998, 5668 children enrolled in the early intervention programs in the sampled counties. Eligibility for the study required that an adult consent to child and family participation, the child be <31 months of age at the time the IFSP was developed, there be in the household an English- or Spanish-speaking adult who could answer questions, and that only 1 child in the family could be recruited for the study (siblings and other children of multiple-birth sets were excluded). A total of 3338 families agreed to participate in the study.
This article is based on 2586 families who were located and agreed to participate in the 36-month interview. Data from families who participated in the 36-month interview were weighted to provide national estimates of families in early intervention. Weighted child and family characteristics are displayed in Table 1. The children were between 30 and 46 months of age at the time of the interview, with 97% of them being between 36 and 40 months. Most (62%) were eligible to receive early intervention because of a developmental delay, 21% had a diagnosed condition, and 16.8% were considered to have been at risk for developmental delay. With regard to gender, 60% of the children were male and 40% were female. Just over half (54%) were white, 21% were black, 16% were Hispanic, 4% were Asian or Pacific Islander, and 5% were mixed race or "other." Participants in early intervention represented a range of maternal education levels as well as income levels.
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At the time of the 36-month interview, 53% of the children were reported as still receiving early intervention services. Of the children who were not receiving services, 60% were reported no longer to be eligible; 5% had moved and could not get services; 34% reported that they either did not want or did not need services anymore; 2% reported that family reasons (eg, caregiver employment) prohibited the receipt of services; 4% reported a reason related to the agency or program; and 1% reported various other reasons for not receiving services, such as the cessation in service was temporary or that the child was receiving services from another source. (These percentages add to >100 because parents could report >1 reason for children’s not receiving services.)
Instrument and Procedure
An interview that lasted 40 minutes was conducted with each parent. A rigorously trained survey research unit conducted the interviews using computer-assisted telephone interviewing, which allows interviewers to read questions and enter responses directly into the computer. Computer-assisted telephone interviewing technology provided the interviewer with the next appropriate interview question on the basis of the parent’s answers. The interview addressed a wide range of topics, including characteristics of the child and the family, a description of services received, and respondent perceptions of the effects of early intervention on themselves and their children.
Respondents were given the option to complete the interview in English or in Spanish. Of the 36-month interviews, 6% were conducted in Spanish. A complete copy of the interview and additional information about NEILS can be obtained at www.sri.com/neils/.
This article is based on the part of the interview that addressed family outcomes, based on a conceptual framework developed by the research team.21 We focused on 11 items that addressed 5 broad questions regarding outcomes for families: (1) Did early intervention enable the family to help their child grow, learn, and develop? (2) Did early intervention enhance the family’s perceived ability to work with professionals and advocate for services? (3) Did early intervention assist the family in building a strong support system? (4) Did early intervention help enhance an optimistic view of the future? (5) Did early intervention enhance the family’s perceived quality of life?
Nine of the 11 interview questions presented statements about the parent’s perceived ability, confidence, or status (eg, I know how to work with professionals and advocate for services; I have relatives or friends to turn to for help or support when I need it), to which parents indicated their agreement with the statement using 4 response options (strongly agree, agree, disagree, strongly disagree). Two additional questions asked about family quality of life, 1 inquiring about current quality of life and the second about anticipated future quality of life (a measure of optimism), with 5 response options (excellent, very good, good, fair, poor). A final item asked families to rate how the help and information received through early intervention had affected their family, with 4 response options (much better off, somewhat better off, about the same, worse off).
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Outcomes Reported by Families
Family outcomes are organized and summarized according to the 5 broad questions described above. Descriptive statistics for the first 9 items are displayed in Table 2 and summarized in the text. Complete statistics for all item responses as well as standard errors for all statistics may be accessed at www.sri.com/neils/.
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Most parents strongly agreed (85%) or agreed (14%) that they knew how to care for their child’s basic needs. Most parents also believed that they were able to help their child learn and develop, although fewer provided strong agreement (64%) and more (32%) provided simple agreement. More variability was evident when parents were asked to rate the extent to which they had a difficult time figuring out what to do about their child’s behavior. More than one third (35%) agreed (24%) or strongly agreed (11%) with this statement.
2. Did early intervention enhance the family’s perceived ability to work with professionals and advocate for services? This question addresses the extent to which parents believe that they can negotiate the service system and feel a sense of efficacy when trying to gain access to services for their children, often referred to as parent empowerment. Two items addressed (a) the parent’s perceived ability to work with professionals and advocate for their child’s needs and (b) whether parents believed that they knew what to do if they were worried that their child was not getting adequate services. Most parents either strongly agreed (65%) or agreed (31%) that they knew how to work with professionals and advocate for services. Most parents also strongly agreed (50%) or agreed (40%) that they knew what to do if they did not believe that their child was receiving needed services.
3. Did early intervention assist the family in building a strong support system? This question is based on extensive research indicating that the nature and the amount of community and social support experienced by a family is highly correlated with their sense of successful coping and adaptation. Four items addressed the extent to which parents (a) had relatives or friends to turn to for help or support when they needed it; (b) had little chance to take part in community activities, such as religious, school, or social events; (c) had relatives, friends, or others who helped them deal with challenges faced as a result of their child’s special needs; and (d) had a "pretty normal" ability to work and play together as a family.
Most parents strongly agreed (62%) or agreed (27%) that they had friends or relatives to whom they could turn for support or help when needed or to whom they could turn for help in dealing with challenges associated with their child’s special needs (41% strongly agree; 41% agree). Also, most agreed (38%) or strongly agreed (57%) that their ability to work and play together as a family was pretty normal even though they had a child with special needs. However, more than one third (36%) of the parents agreed (24%) or strongly agreed (12%) that they had little chance to take part in community activities, such as religious, school, or social events.
4. Did early intervention enhance the family’s perceived quality of life? Quality of life is a broad construct that could encompass the full range of family outcomes, is a subjective phenomenon, and likely transcends responses to individual questions. To address this issue, we asked a single global item: "Thinking about your family’s overall life situation now, would you describe it as excellent, very good, good, fair, or poor?" Approximately two thirds of the parents rated their current quality of life as excellent (38%) or very good (28%). The remaining parents rated their current life situation as good (24%), fair (8%), or poor (1%).
5. Did early intervention help enhance an optimistic view of the future? This question is based on the assumption that without adequate support, the challenges inherent in raising a child with a disability could lead to feelings of hopelessness or despair. Early intervention should help families feel increased hope for a positive future and optimism about the possibilities for them and their child. One item addressed this issue directly, asking parents to rate their expectations for their family’s life situation in the future as excellent, very good, good, fair, or poor.
Most parents expected their family’s future life situation to be excellent (53%) or very good (29%). The remaining parents anticipated their family’s life situation to be good (16%), fair (3%), or poor (<1%). It is interesting that parents were more likely to rate their future life situation better than their current life situation (67% rated current quality of family life as excellent or very good, in comparison with 82% who anticipated future quality of family life to be excellent or very good), further reflecting an optimistic view of future improvement in life situations.
Families’ Perceptions of the Impact of Early Intervention
In addition to asking parents to respond to questions characterizing their family, another item asked parents to rate how the help and information received has affected their family. Most parents considered early intervention to have had an impact on their families, rating their families as much better off (59%) or somewhat better off (23%) as a result of early intervention. Some parents (16%) reported that their family was about the same, and 1% reported that their family was worse off than it had been before early intervention.
Factors That Account for Variability in Family Outcomes
The descriptive statistics suggest that many families had attained a broad set of family outcomes by the end of early intervention, and many reported that their family was better off as a result of early intervention. However, some families were less likely to report positive outcomes; thus, we performed a set of analyses to determine whether key child or family variables were associated with less favorable outcome attainment.
To complete such an analysis, we needed to reduce the 11 family outcome items into a more limited set of scores. To accomplish this, we first converted the items into a common scoring framework, because the items were in 2 different formats (9 items in an agree–disagree format; 2 items in a poor–excellent format). Each item was recoded to a scale from 1 to 4 in the following way:
Cronbach’s 
for the 11 items was .83, indicating that they were highly correlated, and exploratory factor analyses did not provide factor structures of sufficient statistical strength or conceptual integrity to warrant the creation of domain scores. Thus, we created a single summary score, the Family Outcome Index (FOI), with possible scores ranging from 11 to 44. The average weighted score for the families at transition was 36.5, with a median of 37, a range from 18 to 44, and a standard error of .10.
We then selected 12 predictor variables that reflect characteristics of children and families and have been shown to be potentially relevant in other studies and represent variables of interest as policy makers consider the effects and responses to early intervention by different segments of the US population.25 Eight child variables were specified and coded in the following manner: (1) reason for eligibility (developmental delay, diagnosed condition, at risk); (2) gender (male, female); (3) race (white, black, other); (4) age at initial IFSP (birth–<12 months, 12–<24 months, 24–<36 months); (5) birth vulnerability (a composite scale from 1 to 10 capturing prematurity, birth weight, and days in hospital, with 10 being children who had the most difficult birth histories); (6) use of prescription medications or medical device (yes or no); (7) health rating at enrollment (excellent–very good, good, fair–poor); and (8) health rating at 36 months (excellent–very good, good, fair–poor). Four family variables were specified and coded in the following manner: (1) maternal education (less than high school, high school/GED, some college, BA/BS or more); (2) number of adults in household (1, >1); (3) poverty level (poverty, poor, not poor); and (4) any health insurance (yes, no). Because health rating at enrollment and health rating at transition were highly correlated, we used only health rating at transition (the time of the interview) in the analysis.
Linear regression was used to examine the extent to which scores on the FOI could be predicted by any of the 8 child variables or the 4 family variables. Three variables were significantly related to lower FOI scores: health status at transition (F[2,16] = 14.01, P < .001), race (F[2,16] = 13.42, P < .001), and number of adults in the household (F[1,16] = 5.38, P < .05). Pairwise contrasts indicated that families of children whose health was excellent or very good at transition had significantly higher FOI scores than families of children whose health was good, fair, or poor. White families had significantly higher FOI scores than did black families or families from other ethnic minority groups; black families had significantly higher FOI scores than did families from other ethnic groups. Families with >1 adult in the household had slightly but significantly higher FOI scores than did families with a single adult.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Limitations
Several limitations of the study should be noted. It was not a randomized clinical trial; such a study would be impossible given that all eligible families are required by law to be offered services. The study’s findings are based only on the experiences of families who actually participated in the early intervention system and were available and willing to participate in the interview at 36 months. Families that preferred not to participate in Part C programs and those whose children were referred but not determined to be eligible were not included. Information from sample families who could not be located when the child was 36 months of age are not included in the findings. The data were reweighted to adjust for this, but it is possible that the reweighting could not fully represent the missing families. Finally, the findings are based on a limited set of self-report questions asked in the context of a telephone survey. A broader range of assessment methods based on interactions with families would be needed to document more thoroughly family outcomes. Despite these limitations, however, the study provides a number of important insights into how families experience early intervention programs.
Major Findings
The first major finding is that parents perceived many positive family outcomes at the end of early intervention. Most reported that their family was better off as a result of the help and information received. Parents felt competent in their parenting role as well as in their ability to work with professionals and advocate for services. They generally reported a high degree of support from family members and other individuals or groups. Most were hopeful about the future and expected that their child’s life situation and that of their family would be excellent or very good.
Two outcomes were not so positively rated and may warrant future study or alterations in service delivery. First, parents felt less competent in their ability to figure out what to do about their child’s behavior than in their ability to care for their child’s basic needs or help their child learn and develop. This finding is consistent with extensive literature documenting the stress that behavior problems place on families and the challenges that families experience in dealing with problem behavior and suggests an area of enhanced service provision that may be needed by some families. Second, parents reported less support and participation in community activities than support received from family and friends. This may be a factor associated more generally with the demands and constraints of being a parent of a very young infant but also suggests that early intervention professionals may need to consider ways to help families participate in community activities.
Although most families had high scores on the FOI, some did not. Three variables were associated with lower FOI scores: minority status, poorer child health, and single adult families. These findings suggest that early intervention must continue to work on ensuring that services are both accessible and appropriate for families from diverse cultures. They also suggest that children with special health needs pose a special challenge for families and that in addition to including child development services in pediatric practice27,28 there is a need to integrate pediatric health care with early intervention, especially for children who have disabilities and are also in poor health. Finally, early intervention programs need to address the unique life challenges faced by families with only 1 adult to increase the probability the child’s caregiver will fully experience the benefits of program participation.
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CONCLUSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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These findings reinforce the important roles that pediatricians and others professionals play in working with families to identify children who might need and be eligible for early intervention. The services provided by early intervention programs are regarded highly by families, and early referral could potentially result in more optimal outcomes for both children and families.
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ACKNOWLEDGMENTS |
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FOOTNOTES |
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Reprint requests to (D.B.) FPG Child Development Institute, CB #8180, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599. E-mail: don_bailey{at}unc.edu
No conflict of interest declared.
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REFERENCES |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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This article has been cited by other articles:
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  S. A. Rosenberg, D. Zhang, and C. C. Robinson Prevalence of Developmental Delays and Participation in Early Intervention Services for Young Children Pediatrics, June 1, 2008; 121(6): e1503 - e1509. [Abstract] [Full Text] [PDF]
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D. B. Bailey Jr, L. Nelson, K. Hebbeler, and D. Spiker Modeling the Impact of Formal and Informal Supports for Young Children With Disabilities and Their Families Pediatrics, October 1, 2007; 120(4): e992 - e1001. [Abstract] [Full Text] [PDF]
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 A. M Megens, S. R Harris, C. L Backman, and V. E Hayes Known-Groups Analysis of the Harris Infant Neuromotor Test Physical Therapy, February 1, 2007; 87(2): 164 - 169. [Abstract] [Full Text] [PDF]
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V. B. Gupta, S. L. Hyman, C. P. Johnson, J. Bryant, B. Byers, R. Kallen, S. E. Levy, S. M. Myers, A. I. Rosenblatt, and M. Yeargin-Allsopp Identifying Children With Autism Early? Pediatrics, January 1, 2007; 119(1): 152 - 153. [Full Text] [PDF]
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 D. B. Bailey JR, M. B. Bruder, K. Hebbeler, J. Carta, M. Defosset, C. Greenwood, L. Kahn, S. Mallik, J. Markowitz, D. Spiker, et al. Recommended Outcomes for Families of Young Children with Disabilities Journal of Early Intervention, July 1, 2006; 28(4): 227 - 251. [Abstract] [PDF]
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