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Childcare Patterns and Issues for Families of Preschool Children With Disabilities

Booth-LaForce, Cathryn PhD; Kelly, Jean F. PhD

ISEI Article

A longitudinal investigation of childcare for children with developmental disabilities (N = 89) was conducted, with in-person assessments at 12, 15, 30, and 45 months of age, and phone interviews with mothers at 14, 29, 37, and 44 months. When compared with typically developing children from another sample, and with census data, the participants entered childcare at an older age and for fewer hours; they were more likely to be in “informal” (father, relative, in-home nonrelative) care; and they were less likely to transition into more formal care (childcare center, childcare home) with increasing age. Finding good-quality care, the cost of care, distance/transportation issues, and integration with other services/special needs received the highest ratings for childcare issues. Children who were not in childcare had lower adaptive behavior scores if their mothers cited their child's special needs as an issue in keeping them out of care, compared with children whose mothers did not indicate that special needs were an issue. These 2 groups did not differ in their diagnoses, mental, or motor development scores. Results are discussed in the context of family leave policies and welfare work exemptions, and the need for high-quality caregiving options.

RELIANCE on nonmaternal childcare has become a normative aspect of childrearing in the United States. In the most recent childcare data report from the US Census Bureau, Smith (2002) found that 63% of children under 5 years of age were spending time in some form of regular childcare arrangement for an average of about 37 hours per week. Whether out of economic necessity or choice, dramatic increases in maternal employment in the past few decades have led to a concomitant increase in the need for childcare arrangements for infants and young children.

Although there are no national statistics on childcare usage among families with children with disabilities, Landis (1992) found that the mothers of these children entered the labor force at the same rate as the general population. In an earlier report on the present sample of children with disabilities, as well as children with biomedical risk factors, we found that more than 58% were in some form of nonmaternal childcare by 15 months of age (Booth & Kelly, 1998). Thus, it would appear that the need for childcare is no less evident among families of children with special needs than it is for families of typically developing children. In fact, childcare issues have been among the most important problems reported by parents of children with disabilities in survey research (Axtell, Garwick, Patterson, Bennett, & Blum, 1995; Bailey, Blasco, & Simeonsson, 1992; Freedman, Litchfield, & Warfield, 1995; Herman & Thompson, 1995; Horner, Rawlins, & Giles, 1987; Palfrey, Walker, Butler, & Singer, 1989).

Like many other families with young children, families of children with disabilities are faced with a variety of childcare issues, such as finding good-quality, affordable care that is within a reasonable distance from home or work. Additionally, they are faced with logistical problems such as transportation between early intervention (or special education) and childcare programs, and with limited availability of childcare options due to their children's special care needs. Despite federal mandates that all early childhood programs must be accessible to all children (Americans with Disabilities Act, P.L. 101–336), many programs are not equipped to meet the needs of these children (Bredekamp, 1993), and many caregivers lack the appropriate training (Crowley, 1990; Dinnebeil, McInerney, Fox, & Juchartz-Pendry, 1998; Fewell, 1993; Warfield & Hauser-Cram, 1996). Additionally, the severity of the child's disability or illness compounds these problems (Breslau, Salkever, & Staruch, 1982; Stoiber, Gettinger, & Goetz, 1998; Warfield & Hauser-Cram, 1996). Although model training and consultation programs have yielded encouraging results (eg, Giovinazzo & Cook, 1995; Jones & Meisels, 1987; Klein & Sheehan, 1987; Richey, Richey, & Webb, 1996; Ross, 1992), the majority of caregivers have not received such training.

From the University of Washington, Seattle, Wash.

This study was supported by grant MCJ-530640 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services. We thank Jacqueline Bacus, Darlene Todd, Jennifer Page, Karen Halsey, Lynne Cochran, Jennifer Duval, and Donald Goldstein for their assistance. We also thank the families and childcare providers who are participants in this study.

Corresponding author: Cathryn Booth-LaForce, PhD, University of Washington, CHDD, 106SB, Box 357920, Seattle, WA 98195 (e-mail:

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In order to find out more about patterns of childcare usage and the childcare needs and challenges of families of children with disabilities, we examined data from the Early Child Care Study of Children with Special Needs, a longitudinal study conducted by the present authors. The main purpose of this ecological study was to examine the complex interactions among child and family characteristics, and the effects of varying quantity and quality of home and childcare environments on the development of children with disabilities and biomedical risk factors from 12 to 45 months of age (see Booth & Kelly, 2002). In the context of this study, we collected a wealth of longitudinal data about the age at which these children entered nonmaternal childcare, the weekly hours spent in care, and the type of care, as well as interview data about mothers' reasons for not using childcare, the problems and issues of mothers who chose to use childcare, and the particular problem of integrating childcare with other services. In this report, we focus on the children who had diagnosed disabilities by the age of 12 months.

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In describing patterns of childcare usage, we have included data for comparison purposes from the typically developing children enrolled in the NICHD Study of Early Child Care, a 10-site national longitudinal investigation of over 1300 children and their families (see NICHD Early Child Care Research Network [ECCRN], 2001). This is a particularly appropriate comparison sample because we patterned the research design and data collection methods for the Special Needs study after the NICHD study, for which we are investigators also. We have included some additional comparisons with the most recent US census data about childcare, based on the Spring 1997 Survey of Income and Program Participation, which provide a “snapshot” of families' patterns of childcare usage in the previous month prior to the survey (Smith, 2002).

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Children with disabilities (n = 89) and their mothers enrolled in the Special Needs study when the children were approximately 12 months old, and we collected data through 45 months of age. In-person visits and assessments occurred at 12, 15, 30, and 45 months, and a staff member contacted families by phone at 14, 29, 37, and 44 months to update demographic and childcare information.

At the beginning of the study, the mothers had an average of 13.8 (SD = 2.2) years of education, and 84% were married or had a partner. Family income was below the poverty line for 37.5% of the sample, and 18.2% of the sample was in the near-poor category. More boys (64%) than girls were enrolled, reflecting the tendency for boys to be overrepresented in samples of children with special needs. Most of the children (81%) were European American non-Hispanic (7% were Hispanic, 7% African American, 2% Asian, and 3% Other).

The children's specific diagnoses at 12, 30, and 45 months are shown in Table 1. At 12 months of age, children qualified for the study if they were enrolled in an early intervention program because of their identified special needs. We did not include children who had severe visual or hearing impairments, because of assessment difficulties. We included children in the present report at 30 and 45 months only if they had demonstrated a 25% or greater developmental delay.

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Participation in childcare

Our first question concerned the extent to which families used nonmaternal childcare over time in this sample. We found that more than half of the families had children in some form of childcare arrangement by 14 months, and use of childcare increased over time, as shown in Fig 1. Specifically, at 14 months, 56% of the children were in some form of nonmaternal childcare, and this figure increased to 74% by 45 months. The average across ages was 65%, which is comparable to the 63% reported in the census data. Although the percentage of children with disabilities in childcare increased over time, as shown in Fig 1, these numbers were considerably lower than the percentage of typically developing children in childcare in the NICHD study. On average, 80% of the latter children were in childcare, increasing from 72% at 15 months to 90% at 46 months.

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Age of entry and hours

As shown in Table 2, the average age of entering any form of nonmaternal childcare was 11.5 (SD = 12.6) months. In contrast, the typically developing children in the NICHD sample tended to enter care much earlier, at an average age of 5.3 (SD = 6.7) months. The children with disabilities spent an average of 21.4 (SD = 13.9) hours in childcare per week during the months that they were in a childcare arrangement. The number of hours per week of childcare in the NICHD sample from 3 to 54 months of age was higher, with a mean of 27.0 (SD = 15.4) hours per week. In fact, the latter figure may be an underestimate, because it includes hours for months that the child was not in childcare (ie, 0 hours), whereas the mean for the Special Needs study does not. The recent census data reported an even higher figure for hours in care—37 hours per week during the preschool years (Smith, 2002).

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Number of arrangements

On average, the children in the Special Needs study were participating in more than one childcare arrangement simultaneously, with an average of 1.2 (SD = .5) arrangements at 14 months, and steadily increasing to 1.5 (SD = .7) at 44 months (see Table 2). In the NICHD study, the number of arrangements was comparable: 1.3 (SD = .6) at 15 and 24 months, 1.4 (SD = .7) at 36 months, and 1.7 (SD = .8) at 46 months.

The most recent census data indicate that 30% of preschool children of employed mothers participated in more than one childcare arrangement (Smith, 2002). In the present study, the mean was 32% across all time points, with 20% at 14 months, 33% at 29 months, 36% at 37 months, and 38% at 44 months.

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Type of care

Table 3 shows the proportion of children in each type of nonmaternal care at 14, 29, 37, and 44 months. At each age, the most common type was care by a nonparental relative, averaging 32% of the sample (ranging from 28% to 35% across ages). The second most common type at each age was care by the child's father (or mother's partner), with an average of 24% of the sample (ranging from 21% to 27% across ages). Children in center care comprised 18% of the sample (range = 16%–20%); home-based nonrelative care, 15% (range = 10%–20%); and childcare homes (ie, family daycare homes), 11% (range = 5%–14%).

In contrast, in the NICHD study the most common type was center care (33%; range = 17%–48%), followed by childcare homes (24%; range = 15%–30%). Father care comprised 18% (range = 15%–21%), followed by relative care at 16% (range = 12%–20%) and home-based nonrelative care at 9% (range = 5%–12%).

In addition to the differences between samples in the average types of care used, there were notable differences in the patterns of care types over time. These differences are illustrated in Figs 2 to 4. Figure 2 shows the proportion of each sample in “informal” (father/partner, relative, in-home nonrelative) care across time. It is clear that informal care decreased with age in the NICHD sample, but it remained high and relatively stable in the delayed sample.

Figure 3 shows the proportion of children in childcare homes in each sample over time. The typically developing children were more likely to experience care in childcare homes on average, but it is also clear that use of this type of care arrangement declined with age.

Finally, Fig 4 shows the proportion of children in center care over time. Although the proportion of children in center care was very similar in the 2 samples at 14 months, there was a dramatic increase in center-care use in the typically developing sample over time, while the proportion of children in center care in the delayed sample remained relatively stable with increasing age.

We also compared types of care in the Special Needs sample with the most recent census data. Because the census data were collected at only one point in time for a cross section of preschoolers of all ages, we compared these figures with the average across time for the Special Needs sample. We found that children with disabilities were less likely to be in center care (18% vs 24%), more likely to be in informal care (71% vs 64%), and about equally likely to be in childcare homes (11% vs 12%).

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For those mothers whose children were in childcare, we asked them to rate (from 1 = no problem to 5 = a very big problem) the extent to which 7 childcare issues were problematic for them. These issues were: (a) finding good-quality care, (b) confidence in staff, (c) integration with services, (d) cost, (e) special equipment or needs, (f) distance, and (g) transportation. These data appear in Table 4. Although there were a range of ratings for each item, it is interesting that the average score for each item was less than 3. In other words, mothers did not find these issues to be particularly problematic. Nonetheless, the rank order of the ratings is interesting.

The item that received the highest (ie, most problematic) rating at each age was finding good-quality care. At 15 months of age, the cost of childcare, distance to childcare, and transportation issues were the next most frequent problems. However, at 30 and 45 months, integration with services received an increasingly high problem rating. This may reflect changes in services provided for these children, as they transition into more formal special education programs.

As of 37 months of age, 61% of the children had entered a special education program, and this number increased to 95% by 44 months. Of the children enrolled in special education, the majority (69% at 37 months and 54% at 44 months) were also participating in some form of nonmaternal childcare. Thus, families were faced with the challenge of coordinating childcare with special education. Still, it should be noted that the ratings for integrating services were still relatively low, and this is reflected in mothers' specific responses about whether they had a problem coordinating special education with childcare. At 37 months, only 6% of the mothers reported coordination problems, and at 44 months, 23%. Interestingly, at 37 months, only 9% of the mothers whose children were enrolled in special education plus childcare indicated that their Individualized Family Service Plan specifically addressed the coordination between programs; at 44 months, this figure was only 5%.

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A final question concerned the extent to which the children's special needs were a factor in families' decision to not use childcare. These data are shown in Table 5. At 15 months of age, 36% of the mothers who had made the decision not to use childcare cited their children's special needs as a reason. At 30 months, 42% gave this reason, and at 45 months, 46%.

Table 6 shows a series of comparisons of children whose mothers said that special needs were an issue in deciding against childcare, and children whose mothers did not give this reason. We expected that children in the former group would have more severe impairments or perhaps would have different diagnoses than would children in the latter group.

Chi-square analyses at each age indicated that the groups did not differ in their diagnoses. A series of t tests comparing the groups on mental, motor, and adaptive behavior scores at each age produced significant group differences only for adaptive behavior at 30 months, t (47) = 2.19; p = .04, and 45 months, t (35) = 2.60; p = .01. Specifically, mothers who cited their children's special needs as a reason for not using childcare had children with lower adaptive behavior scores than did mothers who did not give this reason.

Although we expect adaptive behavior to be related to mental and motor development scores, and to some extent, diagnoses, it is interesting that adaptive behavior was the significant one discriminating the group of children whose mothers kept them out of childcare because of special needs. That is, it was the children's day-to-day functioning that appeared to be of primary concern when considering childcare.

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Patterns of care

From our longitudinal analyses of data from the Early Child Care Study of Children with Special Needs, we found that families of children with disabilities have needs for childcare that are comparable to the needs of families with typically developing children. Even though the percentage of children with disabilities participating in childcare during the preschool years was lower than the percentage of children in the NICHD study (means of 65% vs 80%), the former figure was very similar to the percentage reported in the census data (63%). Regardless of these differences, it is clear that participation in nonmaternal childcare during the preschool years is as normative for children with disabilities as it is for typically developing children.

Although the average percentage of children experiencing childcare across the preschool years was relatively high in this study, the longitudinal nature of our data revealed that the children with special needs had different patterns of childcare participation over time than did the typically developing children. On average, the children with disabilities entered childcare about 6 months later and, by conservative estimate, for at least 6 fewer hours per week. Notably, the 21.4 average weekly hours in the present report is very similar to the 22.2 hours reported in the Warfield and Hauser-Cram (1996) study of preschool children with disabilities.

The children with disabilities also were more likely to be in informal care throughout the first few years of life, rather than transitioning to more formal care as did many of the typically developing children. These findings echo other reports in the literature. Specifically, Landis (1992) found that spouses provided the largest proportion of type of care among young children (birth to 3 years) with special needs; in an older (5-year-old) group of children with disabilities, Warfield and Hauser-Cram (1996) found that care provided by relatives was most common and center-based care the least common.

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Childcare choices

Families of children with special needs may choose informal care for a number of reasons. One is that much of this care is provided by fathers or other relatives and parents may believe that family members know best about how to meet the child's specific special needs, and/or appropriate alternative care may not be available. The fact that finding good quality care was the most prominent concern of mothers of children in childcare supports the latter idea. This issue is a recurring theme that has been found in prior research (Cuskelly, Pulman, & Hayes, 1998; Warfield & Hauser-Cram, 1996).

Regardless of federal mandates about inclusion of children with disabilities in childcare programs, many are not equipped to meet the needs of these children (Bredekamp, 1993) and many caregivers lack the appropriate training (Crowley, 1990; Dinnebeil et al., 1998; Fewell, 1993; Warfield & Hauser-Cram, 1996). The inadequate supply of appropriate childcare arrangements may be especially problematic as the children with disabilities approach school age. The NICHD data showed a trend toward participation in more formal childcare arrangements as the children aged. These arrangements may provide more structured educational experiences as well as opportunities to develop social skills with peers, which would be expected to provide important benefits in the transition to school. The continued reliance over time on informal care in the Special Needs sample might be less beneficial in the sense that these children would be missing out on important experiences, including daily interactions with their typically developing peers, and their transition to school might be more problematic.

It is also interesting that families who chose not to use childcare because of their child's disability had children with lower adaptive behavior scores than did children whose mothers did not indicate that their child's special needs were a reason to keep their child out of childcare. Once again, these data point to the need for providing appropriate childcare alternatives for families of children with more severe disabilities. This is especially problematic in light of evidence from the present project about the effects of childcare on children's development (see Booth & Kelly, 2002). We found that after taking the child's initial level of adaptive behavior into account, increases in adaptive behavior were related to children's participation in high-quality childcare. Thus, these data suggest that given appropriate high-quality childcare alternatives, children functioning at a lower level of adaptive behavior may benefit from participation in such care, and lack of such alternatives may place these children even further behind their peers when they enter school.

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Childcare costs

Another reason that parents may choose care by family members is that it is “free” or far less costly than other types of care, and this may be an economic necessity for families. In fact, we found that the cost of childcare was another one of the primary concerns of mothers of children in childcare. At the same gross income level, families of children with special needs have additional expenses such as medication, special services and activities, transportation, etc, resulting in a lower net income than do families of children without special needs (Gunn & Berry, 1987). Thus, mothers' income may be even more necessary in families in which the child has a disability than it is in other families. Adding the cost of childcare to these additional expenses may be highly problematic for families, particularly for those who are low-income, and children with special needs are overrepresented in poverty samples (Bennett & Guralnick, l991). For example, in Washington State, 75% of children under the age of 3 who are enrolled in Infant/Toddler Early Intervention Programs (children with established disabilities or at environmental or biological risk of disability) are Medicaid recipients (Washington State Department of Social and Health Services [DSHS], l997).

In some families, the decision for the mother to stay at home and care for a child with a disability is one that can be made without adverse financial consequences. However, in other families, maternal employment may be absolutely necessary for the economic well-being of the family. In fact, in a small Australian study, Cuskelly et al., (1998) found that 100% of mothers of children with special needs, but only 60% of mothers of children without disabilities indicated that they were employed because their “wage is needed.” In such cases, families may have few options about the type and quality of care arrangement to select.

These data suggest the importance of strengthening family leave policies to include more families who might benefit from job-protected leave under the provisions of the Family and Medical Leave Act (FMLA). In l995, only 54.9% of workers met the FMLA employee eligibility requirements, which include continuous, full-time work for a covered employer (Department of Labor, l995). In addition, the FMLA provides only unpaid leave, which is not sufficient for mothers dependent on their own contributions to the family income.

In low-income families, particularly those with single mothers, the need for the mother to stay at home and care for her young child with special needs may result in the need for government assistance. Ironically, the current welfare-to-work Temporary Assistance to Needy Family (TANF) regulations may provide only a few months' respite from work requirements, unless families can qualify for a hardship exemption. However, not all families of children with disabilities living in poverty will be able to obtain a hardship exemption, and the lack of provision for childcare assistance for mothers who are forced to enter the workforce despite their children's special needs, compounds the problem of inadequate care alternatives (Ohlson, 1998).

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Integrating services and programs

Another issue for families was the problem of integrating other services with childcare, especially as the children transitioned into formal special education programs. These data point to the need not only to address the issue of appropriate childcare alternatives, but also to assist families in coordinating their childcare choices with educational programs that are not scheduled around parents' work hours. Very few of the mothers in this study indicated that their IFSP addressed the need for coordination of childcare and other services, suggesting the need for improvement in this area.

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Taken together, our study results suggest that families of children with disabilities would benefit from increased options about whether and when to initiate childcare, and the type of care to use. From a policy perspective, this may mean increased funding for hands-on caregiver training and education (Stoiber et al., 1998), on the one hand, and increased funding for family leave and welfare work exemptions, on the other. Every child with a disability should have access to the most optimal care for their specific needs, whether that means care by the mother, by another family member, or by another well-trained care-provider.

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childcare; developmental delay; developmental disability; special needs

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