How can government improve results for our most vulnerable
(at-risk) children and their families?
A Request for Information – Your thoughts on 4-5 pages
Response template
Deadline: 5pm, 4 December 2014
How can government improve outcomes for our most vulnerable (at-risk) children and their
families?
Please write your response in the template below.
Please note:
 you do not need to answer all sections – just the ones where you have information you would
like to contribute
 please expand or delete boxes as you need to. Please provide no more than 5 double sided
pages of text and font size of at least 10 points
 please do not send us reports or other documents but do include references or links to
supporting evidence or information
 please submit your response to socialinvestment@treasury.govt.nz by 5pm, 4 December 2014.
Thank you for your time and effort in providing this information.
Who do we want to focus on?
We want to focus on how to get better results for children and their families at most risk of poor
education, criminal justice and employment outcomes. They will probably have multiple risk
factors, including being:
 children vulnerable to abuse or neglect
 unsupported/vulnerable teen Caregivers
 children and young people with conduct problems
 children needing a range of services to succeed in school
 people not in safe, secure housing
 children in families with gang connections
 children in families with prison connections
 violent families, including victims and perpetrators.
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Part 1: Your contact details and response summary
Organisation Name:
CCS Disability Action
Contact Person Name:
Samuel Murray
Position:
National Policy Coordinator
Phone number:
04 801 0855
Email address:
Samuel.murray@ccsdisabilityaction.org.nz
What geographical location
does your response relate
to?
Nationwide
What group of people or
issues is your response
targeted towards?
Children with disabilities and their families.
Does your response relate
to a new service or
modification of existing
services?
Both
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Part 2: Your RFI response
A: What works best to identify and engage the children and their families most at-risk of
poor education, criminal justice and employment outcomes?
For example...
 what are successful ways to find and engage the most hard to reach children and families?
Good engagement with disabled children and their families relies on early referrals from medical
professionals to other organisations for social support. Currently, this happens in some areas, but is
not always consistent (CCS Disability Action, 2010, pp. 2-3). The first few years of a child’s life are
crucial This is especially true for children with disabilities and their families. Good early engagement
from organisations that have a positive attitude towards disability can make a real difference for
families, especially at the time of diagnosis.
When your child is diagnosed with an impairment, it can often be a confusing and deeply unsettling
time. Many caregivers have little prior knowledge of disability and are unsure what to expect.
Caregivers that do not accept their child’s diagnosis are at heighted risk of maltreating their child.
Caregivers who receive sensitive positive supports at the time of diagnosis are more likely to accept
their child’s diagnosis and be more attentive and positive towards their child (Wyber , 2012, p. 31).
There is a need for good quality information about what supports are available. There is also often
a need for a professional to take ownership of the supports available to the child and help
coordinate those supports (Illingsworth, 2007).
And/Or
B: How could existing services or supports be improved to make the biggest difference to
children and their families at most risk of poor education, criminal justice and employment
outcomes?
For example...
 how could existing services be better delivered? (this could include services directly provided by
government, or by private or not-for-profit providers or other groups)
 what would need to change to improve the effectiveness of services for the most at-risk groups?
Existing mainstream services need to be more accommodating and responsive to children with
disabilities. The first port of call for disabled children and their families when they need support
should not always be specialist disability services. Specialist services are often more expensive
than mainstream services. Mainstream services also tend to offer more chances for children with
disabilities to be included in the everyday life of their community, including interaction with their
non-disabled peers. Actively including disabled children in the community from an early age will
help prepare them for future employment and education opportunities.
The government needs to put more pressure on mainstream services to include disabled children.
There may be a need for incentives too. Often services are reluctant to accept children with
disabilities because of perceived hassle and resourcing challenges. This is especially apparent in
education (Wills & Rosenbaum, 2013, pp. 34-35). It is currently too easy for some services, such as
Child Youth and Family and schools to pass the buck to expensive specialist disability services,
rather than look at using their own resources to help the child.
Some professionals in mainstream services feel uncomfortable working with children with
disabilities because of a lack of knowledge and training. Social workers have said they find it
difficult to identify abuse in disabled children. Often this is because they may dismiss evidence of
abuse as the result of the child’s disability. They also find it difficult to effectively communicate with
some disabled children, which can lead to the underreporting of maltreatment and abuse (Wyber ,
2012, pp. 25-26). There is a need for more awareness of disability issues as well as training.
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Services such as residential care are often attractive to families, providers and funders for solving
difficult problems, especially as access to shorter term options, such as respite, can be limited.
There have been many examples of children being placed in full time extended care because
access to shorter term options was not readily available (Carpinter & Harrington, April 2006, p. 23).
This is inefficient and deprives some children of a family life.
Caregivers of disabled children often have to co-ordinate multiple services as well as meet their
child’s additional care needs. Caregivers often do a great job, but can be pushed to breaking point
by the lack of responsiveness and coordination from services. There is a real need for clear
information about what services are available. Sometimes families with disabled children are
unaware of even basic disability services, such as Need Assessment and Service Coordination
agencies (CCS Disability Action, 2010, p. 12).
And/Or
C: What issues or problems are not currently being addressed that increase the risks to
some children of not achieving in education or employment?
For example...
 what are the particular issues in your community?
 are there any services needed which aren’t currently available? What are they?
 are the underlying causes of poor outcomes being addressed?
Children with disabilities are often invisible within the wider debate on vulnerable children.
Overseas research has noted that disability appears to be the inequality that some academic
disciplines, such as public health, dare not speak about (Sherlaw, Lucas, Jourdain, & Monaghan,
2014, p. 447).
This response template lists possible risk factors for vulnerable children. While conduct disorders
are mentioned, disability and impairment are not. The evidence that disability can lead to poor
outcomes is overwhelming, including in employment and education. New Zealand research has
found that caregivers with disabled children have a lower quality of life. This research also found a
link between low satisfaction with services and low quality of life (Browne, 2010, p. 70).
Children with disabilities are more likely to live in poorer families, which may compound other risk
factors. It is important to note, however that even middle to high income families with disabled
children face significant challenges and barriers. There are often significant extra costs involved in
raising children with disabilities (Browne, 2010, p. 65).
The 2013 Disability Survey found that:



34 per cent of disabled children live in families that earn under $50,000 a year, compared
to only 24 per cent of non-disabled children.
17.7 per cent of disabled children live in households that earn under $30,000 a year,
compared to 11.5 per cent of non-disabled children.
Five per cent of disabled children live in households that earn under $15,001 a year,
compared to 3.8 per cent of non-disabled children (Statistics New Zealand, 2014).
These estimates may underrate the true extent of poverty for some disabled children. The
disproportionate rate of diagnosis of some conditions among higher quintiles may mask the link with
poverty for other conditions.
In the 2012/13 New Zealand Health Survey diagnoses of Autism Spectrum Disorders as well as
emotional and behavioral issues tended to be higher for boys in higher income quintiles (Ministry of
Health, 2013). This matches a Ministry of Education review of special exam assistance that found
that high decile schools accessed special exam assistance entitlements, for children with learning
disabilities, at a disproportionately high rate (Ministry of Education, 2014, p. 16). This is likely due to
the high cost of expert assessments as well as knowledge of conditions.
A majority of caregivers receiving the Child Disability Allowance are reliant on a benefit. The Child
Disability Allowance is a non-income tested payment for children with high needs. As of June 2014,
53.8 per cent of caregivers receiving the Child Disability Allowance are on a benefit, including
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superannuation. 1
The self-managing nature of our schools and society’s attitudes toward disability means that
discrimination is a reality for some disabled students and their families. Disabled students are still
not welcome at all schools, especially if they do not come with extra resources (Wills &
Rosenbaum, 2013, p. 35).
There is evidence that families with disabled children have trouble accessing early childhood
education. They can face the same attitudinal barriers that many families face in primary and
secondary education, and this includes negative attitudes from Ministry of Education staff.
Research has found cases of Caregivers planning to petition early childhood centres for the
removal of children with disabilities (Stark, Gordon-Burns, Purdue, Rarere-Briggs, & Turnock, 2011,
pp. 11-12).
The barriers that children with disabilities and their families face when accessing education can
have serious impacts on their future employment and education opportunities. The 2013 Disability
Survey estimated that disabled people aged 15 to 44 have an unemployment rate of 14 per cent,
compared to 7 per cent for non-disabled people. 24 per cent of disabled people aged 15 to 44 have
no qualifications, compared to 12 per cent of non-disabled people. Only 14 per cent of disabled
people aged 15 to 44 have a bachelor's degree or higher, compared to 28 per cent of non-disabled
people (Statistics New Zealand, 2014).
There is limited data in New Zealand on child maltreatment and disabled children. The Ministry of
Social Development does not identify whether a child has an impairment when reporting on abuse
and neglect in its statistical reports. This makes it difficult to accurately assess the rate of
maltreatment and abuse for children with disabilities (Wyber , 2012).
Evidence from overseas shows disabled children to be at very high risk of child maltreatment. One
of the most comprehensive study to date, which took place in America, found children with
disabilities to be 3.8 times more likely to be neglected, 3.8 times more likely to be physically
abused, and 3.1 times more likely to be sexually abused when compared with children without
disabilities. Children with communication difficulties and behavioural disorders had a much higher
rate of maltreatment (Committee on Child Abuse and Neglect, Council on Children With Disabilities,
Desch, & Hibbard, 2007, p. 1019).
Government departments, including the Treasury, sometimes seem unwilling to engage with, or
even acknowledge, the issues children with disabilities and their families face. Disabled children are
neglected in policy and this can have significant negative effects on families. Partially this is
because of a lack of data as well as knowledge to understand and link what data is available. An
important first step in addressing the invisibility of children with disabilities would be to use the
Integrated Data Infrastructure project to link and collect demographic data on disabled children and
their families who use government services and income support (Statistics New Zealand, 2013).
And/Or
D: What new interventions, services or arrangements could make the biggest difference for
at-risk children and their families?
For example...
 what existing models used in New Zealand or internationally could be used in your area?
 how can services respond to the complexity and diversity of family circumstances?
 how can the government better target and measure results for at-risk children and their families?
(eg, through outcomes-based contracts)
Early Support
1
This information is from the Ministry of Social Development. The information was obtained by Official Information Act
request.
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Early social support may be an effective way to invest in children with disabilities and their families
to improve future outcomes. Early support empowers families and gives them hope and control
over the future (Illingsworth, 2007) (Wyber , 2012, p. 42). Between 2004 and 2010 our organisation
ran four separate pilots that tested early support for disabled children and their families.
Our early support pilots had strong formal links to other services and medical professionals. This
enabled services to get involved with families from the very start. In the pilots, a dedicated
coordinator worked with families to help them identify the goals they had for their child and family.
The coordinator helped the family to organise all the services and support available for their child.
The coordinator also developed the family’s ability to speak up for their child to ensure their child
gets the best possible support. The aim was to empower families, reduce their stress and put them
in control of their lives and their future (Illingsworth, 2007).
The coordinator’s role was great appreciated by the other professionals involved with the child. The
other professionals felt unable to advocate for the child or help the family develop natural, unpaid,
supports. Professionals often felt restricted because of time constraints and the limits of their
profession. Early support was also greatly appreciated by families. One family member commented
“it is important to have someone at the end of the phone especially ‘non-specialist’ staff”
(Illingsworth, 2007).
The projects were successful, but they have not been adequately followed up. CCS Disability
Action continues to provide similar services through our Supported Lifestyle services, which are
funded by the Ministry of Health and non-government funding. The advantage of the early support
project was the more formal arrangements for co-operation between government agencies and
non-governmental organisations as well as the potential for more intensive support.
The United Kingdom has invested in a national early support style service. An early support service
would be one way to make mainstream services more responsive to children with disabilities and
help coordinate existing services.
Family based foster care
While the focus should be on preventative measures that keep families together, there is a need for
services when there is a family breakdown. Currently, a small number of disabled children end up in
residential care because of a lack of options, following family breakdowns. Family based foster care
may prove better outcomes for these children and be more cost effective.
Family based foster care has proven effective in randomised control trials for youth offenders,
including children with learning disabilities (Coalition for Evidence Based Policy, 2009). We have
extensive experience with foster care for children with disabilities. We have found that foster care
does work for children with disabilities, but tends to require more support and training for
caregivers. Children with disabilities tend to have more placement breakdowns and a lot depends
on the qualities of the foster caregiver (Rosenberg & Robinson, 2004). In New Zealand limited
support is available to foster families; especially around the extra barriers disabled children face
(Wyber , 2012, pp. 37-38).
Family based foster care is far more supported in Finland. Caregivers in Finland have professional
status, including salaries, training and benefits. Even with these benefits, the costs of foster care
remains around 60 per cent of the cost of institutional residential care. The Finnish model appears
to be far more effective at providing foster care for children with disabilities, while retaining the cost
advantage over residential care (Wyber , 2012, pp. 38-41).
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Bibliography
Browne, N. J. (2010). Quality of Life for Caregivers of a Child aged 6 - 16 years with Autistic
Spectrum Disorder and/or an Intellectual Disability: A Comparative Study. Massey
University.
CCS Disability Action. (2010). Project Reconnect Report. (Report available on request)
Coalition for Evidence Based Policy. (2009). Evidence Summary for Multidimensional Treatment
Foster Care (MTFC). Coalition for Evidence Based Policy.
Committee on Child Abuse and Neglect, Council on Children With Disabilities, Desch, L. W., &
Hibbard, R. A. (2007). Maltreatment of Children With Disabilities. Pediatrics, 1018-1025.
Illingsworth, S. (2007). Review of Northland Early Support Pilot Project 2006-2007. (Report
available on request)
Ministry of Education. (2014). Review of Special Assessment Conditions for National Certificate of
Educational Achievement (NCEA).
Ministry of Health. (2013). 2012/13 New Zealand Health Survey: Results for children - Child data
tables: Health conditions.
Ministry of Social Development. (2014). Vulnerable Children Bill: Departmental Report.
Rosenberg, S., & Robinson, C. (2004). Out-of-home placement for young children with
developmental and medical conditions. Children and Youth Services Review, 711-723.
Sherlaw, W., Lucas, B., Jourdain, A., & Monaghan, N. (2014). Disabled people, inclusion and
policy: better outcomes through a public helath approach? Disability and Society, 444-459.
Stark, R., Gordon-Burns, D., Purdue, K., Rarere-Briggs, B., & Turnock, K. (2011). Other parents’
perceptions of disability and inclusion in early childhood education: Implications for the
teachers’ role in creating inclusive communities. He Kupa eJournal , 4-18.
Statistics New Zealand. (2013). Introduction to the Integrated Data Infrastructure 2013. Retrieved
September 29, 2014, from Statistics New Zealand:
http://www.stats.govt.nz/browse_for_stats/snapshots-of-nz/integrated-datainfrastructure/introduction-idi-2013.aspx
Statistics New Zealand. (2014). 2013 Disability Survey: Social and economic outcome tables.
Wills, R., & Rosenbaum, S. A. (2013). Parental Advocacy and the Safeguards Necessary for
Inclusive Education: New Zealand Lessons for Pacific-Asian Education. Pacific-Asian
Education, 27-40.
Wyber , J. (2012). What are the risk factors in the abuse and maltreatment of children with
disabilities. Auckland: Auckland University of Technology.
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