Connecting Foster & Kinship
Carers | SA inc
advocate support connect inform
PARLIAMENT of AUSTRALIA
JOINT STANDING COMMITTEE ON THE NDIS
RE: a submission to the National Disability Insurance
Scheme General Issues Inquiry
JUNE 2023
Background
Connecting Foster & Kinship Carers – SA (CF&KC-SA) writes to you today on behalf of South Australia’s family-based carers (carers). CF&KC-SA is the peak advocacy body for approved carers under the Children and Young People (Safety) Act 2017. We are a not-for-profit, membership-based organisation with 1165 members comprising of carers, stakeholders, professionals, or other associates, and provide an advocacy service to SA’s entire family-based carer community. Our mission is to improve outcomes for all foster and kinship carers in SA by ensuring stakeholders hear the carer voice and uphold their rights. CF&KC-SA performs two ongoing tasks: individual advocacy, and systemic advocacy. Our carer advocates provide individual advocacy by responding to enquiries about challenging matters related to a foster/kinship caring experience. The advocacy team take note of recurring challenges, which are identified as systemic issues we must advocate changes to. Our systemic advocacy efforts predominantly include lobbying for changes to legislation, policies and practices that carers support and/or will benefit from, contributing to departmental and parliamentary consultation requests and information sessions, as well as conducting quantitative and qualitative research via surveys, research internships, academic research, and observation.
The role of the NDIS in family-based care
Each year, CF&KC-SA conducts a comprehensive survey for carers to take part in. It seeks out demographic information about carers, their experiences, and feedback on a number of issues in the child protection sector from the family-based care perspective. The latest survey, conducted during December and January 2022, included 148 participants. As part of the survey, carers were specifically asked to provide data and feedback on their experience with the NDIS; 119 carers participated in this section. Results showed that 57.10 percent of respondents provided care for a foster/kinship child or young person with an NDIS plan, and 44.54 percent think that the NDIS process is a systemic issue in the foster and kinship care space. Participants were given the opportunity to provide us with comments about their experience with the NDIS to bring to light key examples of the issues they experienced. The comments were thematically analysed and revealed five key issues.
Five key NDIS issues that pertain to family-based carers
- Carers reported that the funding provided does not cover the cost of their foster/kinship children and young people’s disability needs.
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Carers reported that little support was given to help carers navigate a “difficult to understand” scheme.
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Carers reported feeling completely excluded from decision-making processes, despite it concerning the child or young person the carer directly provides care for and on a 24/7 basis. Carers want to feel like a “partner” in the process.
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Carers reported that they were unable to access the NDIS portal for their foster/kinship child or young person and therefore have no control and little understanding of the plan.
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Carers reported that the NDIS application process was too slow, causing their foster/kinship child or young person to go without disability support due to limited access and/or financial means.
Evidence of carers’ experiences with the NDIS
The issues listed above have been mentioned in our annual carer surveys over the years, demonstrating this area as an important space that is not improving. To further your understanding of the issues at hand, we have demonstrated primary evidence of each issue above (1 through to 5) by way of sharing a portion of the many comments provided in our 2022 carer survey. These comments are direct quotes with adjustments made for grammatical purposes.
1. Carers reported that the funding provided does not cover the cost of their foster/kinship children and young people’s disability needs.
[Issues include] not being able to gain enough funding to support their needs, or if there is funding, the services via NDIS are lacking in both availability [and] skilled workers…Organisations and the NDIS system [don’t] allow good workers to make any meaningful progress due to funding and time limitations – Carer 1.
[The] last three years [have] gone to review as [there was] not enough money for therapy – Carer 2.
You tell them your needs. They seem to agree [to] half [as] much needed [in the] budget so not all therapies can be paid for – Carer 3.
We spend time working out which therapies are needed, and the amount needed, every time, is reduced by at least half – Carer 4.
2. Carers reported that little support was given to help carers navigate a “difficult to understand” scheme.
[I] don’t understand it at all – Carer 5.
The NDIS is really hard to navigate – Carer 6.
I need a book! It’s a nightmare that never ends – Carer 7.
It was a nightmare. The worst experience [during] my 10 years [as a] foster carer – Carer 8.
3. Carers reported feeling completely excluded from decision-making processes, despite it concerning the child or young person the carer directly provides care for and on a 24/7 basis. Carers want feel like a “partner” in the process.
Carers should have control over many aspects of the plan. Plans are not being used and future funding lost because DCP workers are not doing the work. DCP workers also don’t know the kids well enough to organise the right NDIS workers. [There’s] pressure to not get NDIS plans when clearly appropriate – Carer 9.
[It is] very controlled by DCP, they seem to know more about the child they see for 1 hour every 6 weeks than a carer who looks after the child 24/7 – Carer 10.
[Issues include] waiting on assessments. I am concerned [in regard to] having very little input with it, and I actually have experience as an allied health provider – Carer 11.
I would like to be treated more as a partner in the process. Everything is controlled by DCP – Carer 12.
Carers being excluded from managing it has caused lots of issues [like] supports, not receiving payment and [payments] being lost, poor communication, [and] lengthy delays – Carer 13.
No NDIS plan yet but will be undergoing diagnostic assessments in 2023. I am anxious about the process and not having enough of a contribution to the process and plan. I am an allied health professional, and likely to have more experience with the process than the case worker and just as much knowledge as a disability worker in DCP – Carer 14.
NDIS is a total joke. Difficult to contact. Even more difficult to have planned decisions made. By the time they look at the review or submissions, quotes are out of date and have to be chased up again, all of this costing time and money. Some decisions are ludicrous and others are just a joke as to how they made that decision. There doesn’t seem to be any system for different
departments to talk to each other. I have contacted Bill Shorten several times and had to get his assistance to crack the whip on them. I believe that NDIS will end up non-existent. It’s a joke and totally unworkable – Carer 15.
4. Carers reported that they were unable to access the NDIS portal for their foster/kinship child or young person and therefore have no control and little understanding of the plan.
[The NDIS is] difficult to access and transfer information. I have not been given access to the portal, so I have to wait for the case worker to consent to services and buy resources. When changing workers it took months and months for information about [my child’s] NDIS to be transferred, and there was a delay in services as a result – Carer 16.
[I’m] not able to see how much funding is left – Carer 17.
I don’t know as the confidential clause prevents me [from] knowing how much funding there is or who is using the funding at what amount. Not able to view anything on portal – Carer 18.
[I have] no access to plan management to make enquires or decisions – Carer 19.
5. Carers reported that the NDIS application process was too slow, causing their foster/kinship child or young person to go without disability support due to limited access and/or financial means.
My young person is eligible for an NDIS plan but one is not in place (application submitted in Nov 2022) and has not been followed up by workers, despite numerous requests – Carer 20.
[The] DCP worker [did] not complete paperwork and what needed to be done to ensure best outcomes for child, resulting in major additional stress for us – Carer 21.
It took 18 months to initiate an NDIS application, losing valuable time and not having the appropriate resources put in place – Carer 22.
One carer shared that they had to “fight for a diagnosis and pay privately (Carer 23).”
Two carers shared, however, that having a support person or advocate helped them to navigate and manage the NDIS:
[The] sessions [are] getting shorter and less frequent but having a planner is making navigation easier – Carer 24.
[The] initial phase was not great but now [that] I have an advocate, it’s better – Carer 25.
It is clear to us that the NDIS is an overlooked part of the family-based care experience, and has been problematic for carers for a number of years (as detailed in our 2020 and 2021 carer annual surveys).
Supporting evidence
If the issues mentioned in this submission are not addressed by the relevant persons, the NDIS as is will fail to adequately provide for one of South Australia’s most vulnerable groups: children and young people under the guardianship of the Chief Executive. As the peak body, we know both anecdotally (through our carer advocacy service) and from a body of Australian-based evidence (conducted by social researcher, Marilyn McHugh (2002, 2011, 2014), research intern, Emma Feagan (2021), and child protection expert, Dr. Fiona Arney (2022)), that foster and kinship carer payments do not cover the full cost of providing care for children and young people under guardianship orders. One could only assume that meeting the needs of children and young people in care with disability would cost more than their able-bodied peers. To date, many carers pay out of pocket to meet foster/kinship children and young people’s therapeutic needs, with such costs often left unmet by the SA government. The NDIS is designed to provide funding for all eligible Australians with disability, but SA’s carers continue to report that the NDIS does not provide sufficient funds and access to achieve the disability support needed by those who are, at no fault of their own, growing up in foster and kinship care.
Our concerns
Our concerns relate to two main things:
- the quality of life for foster/kinship children and young people living with disability, and
- carer retention.
Many of SA’s foster/kinship children and young people rely on the goodwill and income of their carers to meet their disability needs by paying out of pocket when the NDIS and carer payments fail to provide. The NDIS is one of many bodies designed to help eligible Australians reach their full potential via financial aid and supports intended to provide them with equal opportunity, an evidently struggling mission in the context of family-based care consumers. We must underscore for the reader that inadequate supports, such as those experienced with the NDIS, add to the known and serious issue of poor carer retention in SA. Inadequate carer payments on top of inadequate NDIS payments, make it immensely difficult for carers to ensure their placements provide the nationally expected level of care as per the National Standards of Out of Home Care 2009-2020
that carers are held account to (the 2021 to 2031 edition is yet to be endorsed). When workers believe these standards of care are not met, or have concerns about a foster/kinship child or young person’s quality of life, many carers are penalised by care concerns when it is the lack of adequate resources that puts family-based carers in this vulnerable position. These situations have led to placement breakdowns, the relinquishment of providing care, and due to the distressing nature of the care concern process, and foster/kinship caring experience, the end of their family-based carer journey by choice—ultimately hindering the quality of life for foster/kinship children and young people. This is a concerning phenomenon, but one we believe this NDIS Inquiry has an opportunity to address and mitigate.
Final statements
When considering the top five issues underscored in this submission, the Joint Standing Committee on the NDIS must see the quality of life of foster/kinship children and young people, and carer retention at the forefront of every matter, for “protecting children is everyone’s business.” Any intended NDIS improvements in this space should therefore be treated as a step toward a stronger foster and kinship carer volunteer workforce, and a more stable and secure experience for those raised family-based care arrangements. It goes without saying that children and young people under guardianship orders benefit from the family-based care model (the accepted preferred arrangement), and that carers play a vital role in their lives, and the child protection system. But, the broader community also benefit by way of economic savings and our care leavers’ valuable and diverse contributions to society now and in the future. We hope this submission urges the federal government to meet their obligation to ensure children and young people in care are adequately provided for and with equal opportunity, as per the National Standards for Out of Home Care 2009-2020 and soon to be endorsed Safe & Supported Framework for Protecting Australian Children 2021-2031. We hope your attention has been drawn to a space that is often overlooked in inquiries, budgets, and policy—for the foster and kinship carer voice deserves to be heard and reported on in important matters like an NDIS general Issues Inquiry.
Thank you for considering this submission in full. We look forward to the final report.
Yours sincerely,
Fiona Endacott
Chief Executive Officer
Connecting Foster & Kinship Carers South Australia