Children with disabilities in Family Start

The survey of 159 Family Start workers, conducted in late 2018, was designed to increase our understanding of the types of disabilities, needs and service delivery gaps experienced by young children with disabilities and their families enrolled in the Family Start programme.

Family Start is a home-visiting programme that supports families with young children aged 0–5 years. While not specifically designed to support children with disabilities, the programme supports vulnerable children and their families, including those with disabilities. It is estimated that Family Start sites around the country have about 5200 children enrolled at any given time, and about 8000 enrolments each year.

This report has three parts:

• Part 1 provides details about children with disabilities in New Zealand and internationally, the research context of this study, and changes to legislation that are affecting the support we need to provide to children with disabilities.
• Part 2 explains the survey’s purpose, objective and methodology.
• Part 3 provides a summary of the survey results.

Five appendixes provide supplementary information:

• Appendix 1 has details of the Family Start programme.
• Appendix 2 has additional information on the survey methodology.
• Appendix 3 has full details of the survey questionnaire.
• Appendix 4 has details of the supports and services available for children with disabilities and their families.
• Appendix 5 features the survey participants’ responses to the open-ended questions in the survey.

The prevalence and nature of disabilities among children enrolled in the Family Start programme:

• Three-quarters (121) of the Family Start workers who responded to the survey reported that their caseloads included families who had children with one or more disabilities.
• Children can have multiple disabilities. The most prevalent were developmental (37%), speech and language (37%), intellectual (33%), and hearing (24%).
• Boys were found to be 1.5 times more likely to have a disability than girls. The higher prevalence in boys is consistent with local and international statistics.
• Fifty-two per cent of the Family Start workers reported working with families whom they considered to have children with disabilities that had not yet been diagnosed by a medical professional.

Families with children with disabilities face multiple issue

Family Start workers reported that families with children with disabilities have issues with:

• subjective wellbeing
• social connections
• knowledge and skills
• income and resources
• health
• transport
• housing

Services and supports most commonly used by families with children with disabilities

According to Family Start workers, the services and supports that families with children with disabilities most commonly access or are referred to are:

• Childcare Assistance (87%) from Work and Income, including in the majority of cases Early Childhood Education (62%), the Early Learning Payment (56%) and the Childcare Subsidy (54%).
• Early Intervention Services (75%) funded by the Ministry of Education, most commonly by referrals to Speech-language Therapists (76%).
• Child Disability Allowance (74%) and Community Services Card (73%) from Work and Income
  Disability Support Services (72%) funded by the Ministry of Health. Referrals are most often to Child Development Services (79%) or, less often, Behaviour Support Services (49%).

Ways to better support families with children with disabilities

Family Start workers provided some of the following suggestions to better support families with children with disabilities:

• Develop a tailored approach to support the specific needs of children with disabilities and the general needs of vulnerable families that have children with disabilities.
• Provide more funding and financial support to families and the services that support them.
• Increase the availability of, access to and hours of home support and respite to parents/caregivers caring for children with disabilities.
• Provide specialised education and training to Family Start workers who work with children with disabilities but might lack the experience and knowledge to support them effectively.