1. Child Care and Children with Special Needs Challenges for Low-income Families

2. Mixed Method, Multi-level Study Qualitative Research: Qualitative Research: Focus groups, interviews of parents of children with special needs representing 39 families in six communities in Maine and Connecticut (completed) Focus groups, interviews of parents of children with special needs representing 39 families in six communities in Maine and Connecticut (completed) Field study in three Maine communities consisting of interviews with professionals who work with families with children with special needs (completed) Field study in three Maine communities consisting of interviews with professionals who work with families with children with special needs (completed) Quantitative Research: Quantitative Research: Child care provider survey of random statewide sample of 430 licensed providers with a response rate of 42% (n-179) (completed, analysis ongoing) Child care provider survey of random statewide sample of 430 licensed providers with a response rate of 42% (n-179) (completed, analysis ongoing) Parent survey by phone of 441 parents with children with special needs (completed, analysis ongoing) Parent survey by phone of 441 parents with children with special needs (completed, analysis ongoing) National data set analysis (NSAF and NLSY) (on-going) National data set analysis (NSAF and NLSY) (on-going)

3. Study Population and Research Questions Low income families (under 225% of poverty) with at least one child 0 to 6 with special needs. Low income families (under 225% of poverty) with at least one child 0 to 6 with special needs. Broad Research Questions: Broad Research Questions: What are the experiences of low income families with children with special needs in finding child care and balancing work and family? What are the experiences of low income families with children with special needs in finding child care and balancing work and family? What constellation of supports makes it possible for these families to work and successfully balance work and family? What are the triggers that cause things to fall apart? What constellation of supports makes it possible for these families to work and successfully balance work and family? What are the triggers that cause things to fall apart? What is the economic and emotional impact on the family? What is the economic and emotional impact on the family?

4. Preliminary Findings from Statewide Survey of Parents of Children with Special Needs In this poster presentation we present preliminary findings from the just completed statewide parent survey component of our study. In this poster presentation we present preliminary findings from the just completed statewide parent survey component of our study. 441 parents of children with special needs in Maine responded to a mailing inviting their participation which was mailed to 6,200 parents on the Medicaid (Title V, SSI and Katie Beckett waiver) and IDEA early intervention/preschool special education lists. 441 parents of children with special needs in Maine responded to a mailing inviting their participation which was mailed to 6,200 parents on the Medicaid (Title V, SSI and Katie Beckett waiver) and IDEA early intervention/preschool special education lists. Analysis of survey data from the full sample is ongoing and we present here primarily findings from the sample of parents of children with special needs ages 0 to 5 Analysis of survey data from the full sample is ongoing and we present here primarily findings from the sample of parents of children with special needs ages 0 to 5

5. Full Sample 441 Participants 441 Participants 97.5% were mother or father of child with special needs 97.5% were mother or father of child with special needs 79% were married; 8% lived with a partner 79% were married; 8% lived with a partner Average of 2.2 children living in the home Average of 2.2 children living in the home 29% had more than one child with special needs 29% had more than one child with special needs

6. Age of Child 0-2 years: 15% 0-2 years: 15% 3-5 years: 46% 3-5 years: 46% 6-10 years: 18% 6-10 years: 18% 11-14 years: 13% 11-14 years: 13% 15-18 years: 8% 15-18 years: 8% 19+:1% 19+:1%

7. 0-5 year old sample 267 children 267 children Average of 2.1 children living in the household (range from 1 to 6) Average of 2.1 children living in the household (range from 1 to 6) 75% (201) attend some form of ECE program. 75% (201) attend some form of ECE program. 24% have more than one child with a disability 24% have more than one child with a disability 28% of low income families have more than one child with a disability 28% of low income families have more than one child with a disability 19% of high income families have more than one child with a disability 19% of high income families have more than one child with a disability 0-5 Sample

8. Primary Diagnosis of Children 28% (76) have a primarily behavioral diagnosis 28% (76) have a primarily behavioral diagnosis 19% (51) have a primarily physical diagnosis 19% (51) have a primarily physical diagnosis 21% (57) have a mixed diagnosis (physical and behavioral) 21% (57) have a mixed diagnosis (physical and behavioral) 31% (83) speech/language 31% (83) speech/language 0-5 Sample

9. Characteristics of Adult Respondents Average age of parent is 34 years (range – 20 to 49) Average age of parent is 34 years (range – 20 to 49) 96% are female; 4% are male 96% are female; 4% are male Educational Level of primary respondent Educational Level of primary respondent 40% of the sample has a 4 year college or higher degree (13% have a graduate degree) 40% of the sample has a 4 year college or higher degree (13% have a graduate degree) 36% have some college classes or an Associates degree 36% have some college classes or an Associates degree 20% have a High School Diploma 20% have a High School Diploma 78% of parents are married, 10% have a live-in partner and 12% are single 78% of parents are married, 10% have a live-in partner and 12% are single Only 6% have another adult (other than spouse or partner) living in the household Only 6% have another adult (other than spouse or partner) living in the household 0-5 Sample

10. Income of 0-5 sample 52% of the families are “low-income” - they make less than 225% of poverty. 52% of the families are “low-income” - they make less than 225% of poverty. 18% make less than $20,000/year 18% make less than $20,000/year 38% make between $20,000 and 45,000/year 38% make between $20,000 and 45,000/year 20% make between $45,000 and 65,000/year 20% make between $45,000 and 65,000/year 12% make between $65,000 and 80,000/year 12% make between $65,000 and 80,000/year 7% make between $80,000 and 100,000/year 7% make between $80,000 and 100,000/year 5% make more than $100,000/year 5% make more than $100,000/year 0-5 Sample

11. Child Care Issues What are the experiences of families in finding child care for their children with special needs? What are the experiences of families in finding child care for their children with special needs?

12. ECE Programs In analyzing data for child care arrangements we used the following categories: In analyzing data for child care arrangements we used the following categories: Regular ECE program (preschool, nursery school, child care center, family child care) Regular ECE program (preschool, nursery school, child care center, family child care) Integrated ECE program (mixes children with special needs and children without, with support) Integrated ECE program (mixes children with special needs and children without, with support) Separate program only for special needs within a regular ECE program Separate program only for special needs within a regular ECE program Stand-alone program only for special needs Stand-alone program only for special needs Head Start Head Start

13. Child Care Arrangements by Primary Diagnosis

14. Use of Family Child Care Homes for Children with Special Needs Statewide surveys show that 40% of Maine’s 0-5 population as a whole are using family child care homes. (Maine OCCHS, 2002). Statewide surveys show that 40% of Maine’s 0-5 population as a whole are using family child care homes. (Maine OCCHS, 2002). Yet in our study, only 5% of our sample of children with special needs are using family child care as their primary child care arrangement. Yet in our study, only 5% of our sample of children with special needs are using family child care as their primary child care arrangement. 0-5 Sample

15. Special Services Received by Children 0-5 93% of children received special services (OT, PT, ST, counseling, talk therapy) 93% of children received special services (OT, PT, ST, counseling, talk therapy) 56% of children have services delivered at an early care and education setting 56% of children have services delivered at an early care and education setting 31% of children have services delivered at home 31% of children have services delivered at home 63% of children 0-2 had services delivered at home 63% of children 0-2 had services delivered at home 21% of children 3-5 had services delivered at home 21% of children 3-5 had services delivered at home 53% of children have services delivered at specialist’s office* 53% of children have services delivered at specialist’s office* *Percentages add up to more than 100% because some children are receiving services at multiple locations. 0-5 Sample

16. Child Care Problems

17. Number of Child Care Problems by Primary Diagnosis Even after controlling for age, location (urban/rural) and income, having a child with a behavioral issue is strongly related to the number of child care problems (F = 7.95, p <.01) Even after controlling for age, location (urban/rural) and income, having a child with a behavioral issue is strongly related to the number of child care problems (F = 7.95, p <.01) Having a child with a physical or mixed diagnosis is not related to the number of child care problems. Having a child with a physical or mixed diagnosis is not related to the number of child care problems. 0-5 Sample

18. Work Issues What are the experiences of parents of children with special needs in balancing work and meeting the needs of their children? What are the experiences of parents of children with special needs in balancing work and meeting the needs of their children?

19. Employment 63% of respondents are currently employed 63% of respondents are currently employed 10% of those working have a second job 10% of those working have a second job In a typical week, respondents work an average of 33 hours (ranging from 1 to 98); the most common number of hours is 35 hours per week. In a typical week, respondents work an average of 33 hours (ranging from 1 to 98); the most common number of hours is 35 hours per week. 26% work off-hours 26% work off-hours 0-21 Sample

20. Family Employment 56% of families have two adults working 56% of families have two adults working In 33% of families, only the spouse/partner works In 33% of families, only the spouse/partner works In 7% of families, only the mother works In 7% of families, only the mother works In 5% of families, neither parent works In 5% of families, neither parent works 0-21 Sample

21. Shift work 48% of families both work between 6am and 6pm 48% of families both work between 6am and 6pm In 25% of families, the mother works during daytime hours and the father works off-hours In 25% of families, the mother works during daytime hours and the father works off-hours In 19% of families, the mother works off hours and the father works daytime hours In 19% of families, the mother works off hours and the father works daytime hours In 8% of families, both parents work off-hours In 8% of families, both parents work off-hours In 52% of families, at least one parent works off-hours In 52% of families, at least one parent works off-hours 0-21 Sample

22. Employment Problems Related to Having a Child with Special Needs 57% of parents have had to reduce work hours in order to care for their child 57% of parents have had to reduce work hours in order to care for their child 44% changed work hours to a different time of day 44% changed work hours to a different time of day 30% of parents have quit work (other than for normal maternity leave) 30% of parents have quit work (other than for normal maternity leave) 29% turned down a better job or promotion 29% turned down a better job or promotion 27% of parents have changed jobs 27% of parents have changed jobs 26% worried that they were at risk of losing their job 26% worried that they were at risk of losing their job 5% have lost or been fired from a job 5% have lost or been fired from a job Respondents were asked whether they have had any of these employment problems because of having a child with special needs now or in the past. Respondents were asked whether they have had any of these employment problems because of having a child with special needs now or in the past. 0-21 Sample

23. Interruptions at work We looked at whether parents were interrupted never, rarely, occasionally or often at work for reasons related to their child’s special needs. We looked at whether parents were interrupted never, rarely, occasionally or often at work for reasons related to their child’s special needs. 30% of working parents were interrupted “often” during their work week (about 3.5 times a week) 30% of working parents were interrupted “often” during their work week (about 3.5 times a week) Another 33% of working parents were interrupted “occasionally” during their work week Another 33% of working parents were interrupted “occasionally” during their work week 0-21 Sample

24. Interruptions at work by primary diagnosis Having a child with a mixed diagnosis did not relate to the number of interruptions at work. Having a child with a mixed diagnosis did not relate to the number of interruptions at work. Having a child with a primarily behavioral issue was strongly associated with more interruptions at work – 76% of parents were interrupted “occasionally” or “often” (t = 4.6, p <.000). Those parents were interrupted about 3.7 times a week. Having a child with a primarily behavioral issue was strongly associated with more interruptions at work – 76% of parents were interrupted “occasionally” or “often” (t = 4.6, p <.000). Those parents were interrupted about 3.7 times a week. Having a child with a primarily physical issue was significantly associated with more interruptions at work – 77% of parents were interrupted “occasionally” or “often” (t = 2.30, p <.05). Those parents were interrupted about 2.9 times a week. Having a child with a primarily physical issue was significantly associated with more interruptions at work – 77% of parents were interrupted “occasionally” or “often” (t = 2.30, p <.05). Those parents were interrupted about 2.9 times a week. Having a child with a primarily speech/language issue was strongly associated with less interruptions at work – 16% of parents were interrupted “occasionally” or “often” (t = 8.80, p <.000) Having a child with a primarily speech/language issue was strongly associated with less interruptions at work – 16% of parents were interrupted “occasionally” or “often” (t = 8.80, p <.000) 0-21 Sample

25. Number of Employment Problems Even after controlling for age of child, location (urban/rural) and income, having a child with a behavioral issue is significantly related to having more work problems (F = 5.118, p <.05) Even after controlling for age of child, location (urban/rural) and income, having a child with a behavioral issue is significantly related to having more work problems (F = 5.118, p <.05) After controlling for age of child, location and income, having a child with a mixed diagnosis is moderately related to having more work problems (F = 3.05, p <.10) After controlling for age of child, location and income, having a child with a mixed diagnosis is moderately related to having more work problems (F = 3.05, p <.10) Having a child with a physical issue is not related to the number of work problems Having a child with a physical issue is not related to the number of work problems 0-5 Sample

26. Reports: Parents’ Voices (available in pdf format on our web site) Parents’ Voices (available in pdf format on our web site) Final Report and issue briefs, Spring, 2005 Final Report and issue briefs, Spring, 2005 For more information, please visit our website at http://muskie.usm.maine.edu/specialneeds or contact: http://muskie.usm.maine.edu/specialneeds Helen Ward, JD., Project Director/Co-Principal Investigator 207-780-5831 hward@usm.maine.edu or Lisa Morris, PhD., Co-Principal Investigator 207-780-5846 lmorris@usm.maine.edu University of Southern Maine Edmund S. Muskie School of Public Policy Institute for Child and Family Policy