Purpose
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.
Methodology
The Family Start Disability Survey was conducted via SurveyMonkey between October and December 2018. The survey participants comprised Family Start workers from all of the programme’s regions.
Participants were recruited in two phases:
- All Family Start providers were contacted via email about the survey and its purpose and asked to support their staff to take part. From the 44 providers contacted, 33 agreed to enable their staff to participate in the survey. They provided email addresses for a total of 283 Family Start workers.
- Via SurveyMonkey, we sent invitations to all 283 Family Start workers to take part in the survey. One hundred and fifty-nine of them provided responses and 121 reported caseloads that included families with children with disabilities.
The results and analysis included in this report are based on the responses from the Family Start workers working with these families.
Limitations/Caveats
As the Family Start workers’ participation was voluntary, the survey was based on a non-probabilistic sample of Family Start workers from sites that had agreed to participate in the survey. This means that the survey results do not claim to be representative or otherwise of all Family Start workers, and are subject to caveats and limitations on accuracy in terms of the wider population.
Where responses are analysed by demographic variables (eg, disability types), indicative results are presented. However, these should be interpreted with particular caution as the sample size may be in single figures.
It is also important to recognise that:
- the Family Start workers who took part in the survey do not have: perfect knowledge of the young children and their families; diagnostic information; or information on the extent to which services are available in their regions (including services provided in other sectors). This may affect the accuracy of their responses
- the survey questions were formulated to facilitate Family Start workers’ responses
- the information collected was aggregated and relied on Family Start workers’ views of the families they were supporting at the time of the survey.
Key Results
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.