Introduction
Families with children with disability are disadvantaged even when their socio-economic status is middle class. NDS is concerned that this has not been recognised in the development of the Family Support Program.
The presence of a significant disability is itself a key indicator of disadvantage with children. These children should be afforded similar recognition and commitment to early intervention that other marginalised groups receive, such as Indigenous children and children from diverse linguistic backgrounds.
In 2003, the Australian Bureau of Statistics reported that 317,900 had a disability (around 8 per cent of all children), increasing from 5.3 per cent in 1981. About half of these children, 1 in 24, had a severe or profound core activity limitation (4.3%, 165,300). Boys were more likely than girls to have a disability (10 per cent and 7 per cent); the most prevalent disabilities were intellectual/learning (166,700 or 4.3 per cent) and physical/diverse (162,800 or 4.2 per cent).
Autism and intellectual impairment were associated with high proportions of severe or profound core activity limitation—87% and 75% of children with these respective conditions also had a severe or profound core activity limitation.
Almost all (97%) children aged 5-14 years with a disability were attending school—89% of them in ‘mainstream’ schools and 9% in ‘special’ schools. Around 63% of school children with disabilities experienced difficulty at school—intellectual/learning difficulties, fitting in socially and communication difficulties were the most common.
Compared with other children, children with severe disability (4.3 per cent or 165,300 in 2003 up from 1.6 per cent in 1981) rely more heavily on parents, other family members and teachers for assistance, and many require formal intervention, including specialist health and disability services.
While the prevalence of disability generally increases with age, severe disability is more common among children aged 5-14 years than among 15-24 year olds (4.9 per cent and 2.2 per cent respectively).
An estimated 54,600 people were primary carers of co-resident children with a severe or profound core activity limitation; and the vast majority (91%) were mothers.
About 1 in 2 (48%) co-resident primary carers of children reported needing more support—more respite care and financial assistance were their greatest needs.
A Picture of Australia’s Children 2009, the fourth AIHW report in a series, indicated that overall children aged 0-14 years are doing well. However, rising rates of severe disability, diabetes, the disadvantages faced by Indigenous children and those living in remote areas are a concern.
If FaHCSIA’s goal in focusing on early intervention is to prevent disadvantage, NDS seeks assurance that the Family Support Program will develop indicators and outcomes to address the specific needs of families where one or more children have a disability.
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Theme 1: Program Operational Framework
- Do the draft program operational framework and six key requirements identify all the key factors that will support the more effective delivery of FSP services?
While families of children with disability cannot be termed a ‘community’, it is imperative that they are recognised as a group that is vulnerable and highly disadvantaged. While the framework is broad and relates to all children, as the six key requirements are further developed they should ensure a specific focus on the outcomes for families of children with disability.
Theme 2: Program Design
- How can we build flexible service models with improved service pathways that are consistent with the FSP principles and operational framework?
NDS asks that Invest to Grow projects1 evaluated as successful should receive ongoing funding.
- How can we ensure the service system is able to adequately support and engage both universal and targeted client groups in a region?
As the program design stands, disability is not targeted—it is lost in the ‘universal’ and ‘disadvantaged ‘categories. This means that families of children with disability may not have access to essential screening and diagnosis or timely access to appropriate support services.
A national model based on South Australia’s Every Chance for Every Child can work well for children whose disability is identified early. However, it is unlikely to benefit some children whose disability, such as developmental delay, autism and vision loss, cannot be diagnosed at birth but may become more evident after 1-2 years.
While the focus on the mother is very important, this may inadvertently exclude a greater focus on the need for the child with disability to access early intervention or other services.
If families of children with disability were identified as a marginalised group, a program similar to the UK Sure Start Program would assist their connection to services at an earlier age.
Many families with one or more children with disability experience disadvantage because of ongoing financial stress. This can be due to the extra cost in meeting the health and support needs of the child or children with disability. Many families have to manage on a reduced income as their caring role prevents them securing and retaining meaningful employment. Some family relationships break down due to the stress of caring and carers often have poor physical and mental health compared with the general population.2
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Theme 3: Service Delivery and Innovation
- How can we improve service delivery so that clients requiring services in any of the core FSP streams can enter through any FSP service (ie a ‘no wrong door’ approach)?
Services need to be
- community-based
- family-centred
- prioritised around early intervention
- encourage inclusion
- offer and assume consumer participation; and
- use methods supported by Evidence Based Practice.
Services designed in that way will have a better chance of achieving a “no wrong door approach”.
- How can we better link with other community services (eg FaHCSIA and other Commonwealth programs, state/territory services such as child protection services and mental health)?
Consultation with consumers and community based agencies is imperative in the establishment of effective links. At the macro level, FaHCSIA should strive to create stronger links with the Department of Health and Ageing and state/territory agencies. At the community level, NDS also recommends that FaHCSIA state/territory offices seek advice from service providers and community groups to better gauge and understand creative and flexible solutions to local issues.
- Should we have a set of standards for staff delivering any FSP service?
Staff who are health professionals should hold the appropriate qualifications and other staff should be suitability qualified in relation to the role they are performing, particularly those who are directly work with children and families.
- What service quality standards do you think the FSP should have and are there existing standards that might apply?
There are elements of the HACC National Services Standards and the National Disability Services Standards that will be applicable to quality service standards for FSPs. Service quality standards should be outcomes-based with robust outcomes measures and streamlined reporting and accountability consistent with other systems to reduce red tape. Organisations need to focus on what they do best—service delivery.
The HACC National Service Standards provide agencies with a common reference point for internal quality controls by defining particular aspects of service quality and expected outcomes for consumers in seven key areas:
- Access to services
- Information and consultation
- Efficient and effective management
- Coordinated, planned and reliable service delivery
- Privacy, confidentiality and access to personal information
- Complaints and disputes
- Advocacy
The Disability Services Standards 'define the Government’s requirements for service quality'3 across five main areas: values and principles (having the right approach); service outcomes (having the right end result); service delivery (having the right organisational processes in place); service management; and staff recruitment, employment and training (having the right staff). The standards are:
- Standard 1: Service access
- Standard 2: Individual needs
- Standard 3: Decision making and choice
- Standard 4: Privacy, dignity and confidentiality
- Standard 5: Participation and integration
- Standard 6: Valued status
- Standard 7: Complaints and disputes
- Standard 8: Service management
- Standard 9: Employment conditions
- Standard 10: Service recipient training and support
- Standard 11: Staff recruitment, employment and training
- Standard 12: Protection of human rights and freedom from abuse
- In what circumstances would providers benefit from sharing information/data/resources (including offices, administrative processes, workers, products) and how could this be facilitated?
Information sharing on service principles, practices and developments is vital. Exchange of statistical data on service issues, priorities and unmet need is also critical.
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Theme 4: Needs and Location
- What factors should be taken into account in determining the range of FSP services required for a region or community?
For children with disability, lengthy gaps exist between referral for early intervention assessment and action. Delays are often in the order of one to two years, by which time the diagnosis may have changed and the original need for the service is superseded by another need. There is fragmentation of early intervention, frequently between private providers, non-government services and government agencies.
Arrangements for therapy services to school-aged children with disability are another consistently identified issue of concern to families, including:
- Reduced hours of service provided when the child’s needs have not changed;
- Hours provided are significantly less than those required for the child to obtain benefit; and
- Fragmentation of services across different types of therapy when a coordinated approach is required for the child to get the best outcome from the services available.
Families of older children and adolescents with disability often indicate that, at the time when it is becoming more difficult to care for their children’s needs both behaviourally and physically, the support services available to help them are severely reduced. For example, across Australia therapy services become less available, recreational opportunities diminish and specialist counselling services do not exist to meet the needs of older children. As the children reach adolescence, parents try to find a solution to the increasing and changing needs of their children and families across the whole range of disability services and believe that a specialist service is required to meet them.
The uneven distribution of services across regions and communities also creates issues. NDS recommends that FaHCSIA consider an optimal, sustainable and effective ratio that balances the number of children and families in a community with the number and range of services available.
NDS recommends that the critical first step is to introduce better data collection methods which will provide a clearer picture of the number of children and young people with disability in regions and communities. Such data would then form the foundation of any service planning and capacity decisions.
- What is the best way to specify service catchments/service delivery areas? For example: In delivering services should your delivery area be defined by statistical sub-divisions, local government regions, postcodes or by other means?
The Socio-Economic Index for Areas (SEIFA)4 is a suite of four summary measures that have been created from information in the 2006 Census. According to the AIHW, there is a strong relationship between a statistical local area’s (SLAs) rank on the Index of Economics Resources and its rank in terms of disability rates. That is, the most disadvantaged SLAs within a capital city tend to have the highest rates of disability. However, this conclusion does not negate the fact that families with children with disability can be vulnerable to risk no matter where they live.
Local Government Areas would be a logical service catchment/service delivery area with existing government structures through local councils. An integral part of the success of this model is genuine partnership with local governments.
It is important to note that whichever micro-level service catchment model is chosen, invisible boundaries are not created whereby families are denied access to services if they apply for them in the wrong or ‘non-primary’ LGA. Consideration must be given not only to the area in which families and children live, but also the areas in which families work and children go to school. These can often be very different, and it is imperative that this does not impact on access to services. For example, some families may need to access FSP streams in their work LGA during business hours and in their home LGA after hours or at weekends. Access should be seamless and transferrable across such micro-level boundaries.
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Theme 5: Selection and Retention of Providers
- How should a balance be achieved between giving providers funding security, managing performance and ensuring services are located in areas of need?
The creation of improved operating environments between inter-governmental departments and the non-government sector remains essential. This cooperative approach would support the improvement of the collective capacity to deliver the outcomes necessary to maximise the health and wellbeing of children with disability. Of relevance are the comments of Monsignor David Cappo AO, Vice Chair, Australian Social Inclusion Board and Commissioner for Social Inclusion South Australia5 :
‘Fragmented responses from education services, disability services, primary health services, child protection services, housing services, mental health services, drug and alcohol services and employment services are not only an inefficient use of limited community resources, they are a totally ineffective way to address complex issues and the complex needs of individuals experiencing them. From the beginning, the Social Inclusion Initiative in South Australia faced the perversity that those most in need are least well served by services strictly organised along traditional program lines. Joined-up problems demand joined-up solutions’.
Cooperation and collaboration between and across Commonwealth and State/Territory Governments are required to establish child disability measures in databases held by the key departments responsible for health, disability, education, employment and community development. This ‘joined up’ approach would enhance research capacity to improve the development of policy, sharing of vital data and the delivery of better targeted solutions. In South Australia, a milestone report prepared by internationally renowned expert, Dr J Fraser Mustard6,commissioned by the State Government during his tenure as an Adelaide Thinker in Residence 2006–2007 emphasises this view, and made the following recommendation
”The Government of South Australia should establish a linked integrated data system from the work of its various Departments that relate to physical and mental health, early child development, education, behaviour and socio-economic factors. This could be modelled on the program established by the Government of Manitoba, with the University of Manitoba more than 15 years ago. The findings from the integrated database should be publicly reported annually”.
- How should good performance in the FSP be identified?
There needs to be consultation with consumers and community based organisations to agree on performance measures. It is important that intervention and response rates comply with the contract of engagement, as well as the achievement of individualised, appropriate and sustainable outcomes for families and children.
- How should outcomes in the FSP be measured?
There needs to be consultation with consumers and community based agencies to agree on outcomes measures. Family stability and security; health, wellbeing, educational and vocational outcomes for children with disabilities, are important.
- What systems and processes could we use to support this?
There needs to be consultation with consumers and community based agencies to agree on these measures. The processes need to be well researched and gauge the issues that are of practical relevance to families and children with disability. For service providers, these processes and systems need to be widely understood and supported. Any reporting and accountability should be as streamlined and as relevant as possible without creating excessive red tape and onerous compliance.
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Theme 6: Funding
- What are the key features that providers consider essential in building a rational and transparent system for distributing available resources?
It is important that the Australian Government recognises that long-term financial resources are needed to ensure that children with disability and their families are able to access all the benefits of community living as all other Australians expect to enjoy.
‘Available resources’ must be used to include a focus on families with children with disability. Ideally, diagnosis of a child’s disability will lead to timely referral to the appropriate services where the funds can meet their needs. Referral will become a hollow exercise if the funds are not available to enable families to receive the supports they require to ensure their children’s health and wellbeing.
23 July 2009
Contact
Dr Ken Baker
Chief Executive
National Disability Services
Ken.baker@nds.org.au
Phone 02 6283 3200
About National Disability Services
National Disability Services (NDS) is the peak industry body for non-government disability services. Its purpose is to promote and advance services for people with disability. Its membership includes 650 not-for-profit organisations, located in all parts of Australia, which collectively support people with all forms of disability.