New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
Part 2
To meet these needs it is helpful for families and
carers to:
• have information on ASD and how it affects
the person
• receive practical assistance, including
preventative services and supports to
minimise the need for crisis management
• have information on support services, ASD
groups, rights and entitlements
• be familiar with services that are
available and know how to access them
(Recommendation 2.4.1)
• have their needs considered when a needs
assessment is undertaken by the Needs
Assessment and Service Coordination agency
(NASC)
• know how to act as effective advocates for the
child and family
• have one key person to case manage and
liaise with the family and multiagencies
• know how to access emotional support and
counselling, if required
• know how to access genetic counselling.
Family support services need to target families
to increase their capacity to provide for a family
member and develop informal and community
supports around the family. Services should
include flexible and intensive support, planned
respite (if required), a range of planned
short-term breaks, parent education and
empowerment, home-based support, financial
support, behavioural intervention, substitute
care and transition services to adulthood 182
(Recommendation 2.4.2 ). Families of younger
children especially need access to services and
supports during school holidays 11 .
Many families and whänau report that mutual
support networks are an important element in
their support systems. Individuals who have
had experiences similar to their own can provide
practical and emotional support. Professionals
can play a role in providing information and
facilitating parent entry into a support network 183 .
Many of the issues faced by carers are not
inherent to the impairment of the person with
ASD but are socially constructed 184 . Researchers
advocate:
• joint funding, requiring agencies to work
collaboratively in providing services
• more direct involvement of users and families
and carers in planning and implementation of
service provision (Recommendation 2.4.3 )
• more extensive use of the social model of
disability in applying welfare policies
• education and public information so that the
public is more accepting of children with
disabilities in the community 184 .
Service coordination
The need for service coordination and case
management for individuals with ASD is
emphasised throughout the ASD Guideline
(Good Practice Point 2.4.4). The heterogeneity of
the condition of ASD (wide range of degree of
impairment, age at diagnosis, intellectual ability,
personal needs and health status) necessitates
a wide range of supports and services.
Needs Assessment and Service Coordination
(NASC) is the first step for a person to get
Government-funded disability support
services (www.supportoptions.co.nz).
The Health Funding Authority (previous
funding body whose functions are now
fulfilled by the Ministry of Health and District
Health Boards) developed guidelines for
needs assessment and services coordination
agencies working with people with ASD and
their families/whänau 185 . The Health Funding
Authority Guidelines recognise that the nature
of the needs of people with ASD increases the
likelihood that they will need intensive service
coordination, with follow-on benefits accruing
from an ongoing relationship with their service
coordinator. An individualised approach to
planning and delivery is seen as particularly
important for people with ASD.
Specific recommendations on the coordination
of multiple services are outside the scope of the
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New Zealand Autism Spectrum Disorder Guideline