Belongside
Families
Submission to the National Carers Strategy
Supporting Carers of Children with Disability
September 2024
Belongside Families: Empowering Parents of Children with Disability
Belongside Families is a family-led, independent, not-for-profit organisation supporting families raising children with developmental delay, disability and autism across New South Wales.
Through free online programs and peer groups, trusted resources, and supportive community, we empower over 5,000 parents and carers each year to build the skills, knowledge, and confidence to help their child and family to thrive.
Belongside Families’ purpose is to provide essential support for families early in their journey enabling them to live their best lives and discover a future full of possibility.
For more information contact
Stacey Touma CEO
Belongside Families
stacey@belongsidefamilies.org.au 0433 628 828
Introduction
The Australian Government’s initiative to develop a new National Carer Strategy provides a crucial opportunity to address the unique and complex challenges faced by carers of children with disability.
Carers of children with disability play an invaluable role in our society, providing round-the-clock care and
support that is often under-recognised and undervalued. This submission is based on a survey of 5
4 parent s an d carer s o f childre n wit h disability , offerin g insight s int o thei r experiences , challenges , a
nd needs. It highlights the specific issues carers face and presents practical recommendations based on their
feedback.
Key findings include the need for increased financial support, improved access to respite care, better
mental health support, and greater recognition of the carer role. Our recommendations aim to addres
s these issues through practical, achievable measures that can significantly enhance the lives of carers, with a strong emphasis on personalised and tailored solutions.
It is crucial to recognise that carers of children with disability face distinct challenges compared to other carer groups. Their caring role often extends throughout their child’s life, requiring constant adaptation t o changin g need s an d long-ter m planning . Thi s uniqu e positio n demand s equall y uniqu e an d tailor ed support solutions. Furthermore, carers do not exist in isolation from the children they care for - when
the systems their child interacts with fail, it directly impacts the carer's wellbeing, often leading to burnout,
exhaustion, and financial strain.
This submission provides a detailed overview of the challenges faced by carers and proposes
recommendations based on family feedback to ensure the new National Carer Strategy delivers
meaningful, systemic change for carers of children with disability.
Key Findings
Balancing Caring Responsibilities with Work or Other Commitments
Carers of children with disability often face difficulties maintaining employment or fulfilling personal
commitments due to the intense and unpredictable nature of caregiving. This makes it difficult to commi
to regular work hours or engage in activities outside of caregiving.
“If I had more certainty and stability in my daughter’s supports and didn’t have to spend
justso don’tmuch timehave theadvocatingheadspaceI wouldor timebe orableenergy.”to work (and pay taxes!) but at the moment
“Ifinancially.had to leaveIt’s nearlymy jobimpossibleto caretoforbalancemy childwork andfull-time,the levelandof carenow mywe’rechildstrugglingneeds.”
76% of carers reported difficulty in balancing caregiving duties with work or other commitments.
36% of carers identified balancing caregiving responsibilities with work or other commitments as one of their top three challenges.
Financial Strain
Carers are often forced to reduce work hours or leave employment entirely due to their
caregiving responsibilities, leading to financial strain. The existing Carer Payment does not
adequately reflect the true costs of providing care.
“Ibeginhadtotocoverquit mythe job,costs.andThethefinancial$153 perstrainfortnightis huge.”from the carer allowance doesn’t even
74% of carers highlighted the need for increased financial support.
47% of carers reported financial strain due to limited income or lack of financail support in their top three challenges they face as a carer.
Social Isolation from Friends and Community
The demands of caregiving often lead to social isolation for carers, making it difficult for them to
maintain relationships or participate in community activities. A lack of understanding o
r awareness about their child’s disability can further isolate them, as carers may feel excluded
or misundersto od with in the ir communit y. Th is soci al isolati on c an ha ve a significa nt negat
ivempact on carers’ mental health and overall wellbeing.
“It’s isolating, it puts the family dynamics under strain, there is not enough information
out there to help parents understand their role is a caring one, it disrupts othe
relationships, it can create overwhelm & burnout.”
“Isomethingfeel completelyjust for myself.alone. IPeoplecan’t don’trememberunderstandthe lastwhattimeit’sI wentlike.” out with friends or did
26.7% of carers identified social isolation as one of their top challenges, with many stating that their caring responsibilities leave them with little time or energy to maintain social connections.
Inadequate and Inconsistent Respite Care
A common concern among carers is that respite care services are either unavailable, difficult to access, or
unsuitable for their child’s specific needs. Without access to adequate respite, carers are left to provide
constant care, leading to burnout and affecting their ability to continue caregiving in the long term.
“Wegettingneedanymorehelp,respiteand it’scareoverwhelming.”that’s easy to access and reliable. Right now, we’re barely services68% of carersare insufficientreported thator inappropriatelack of accessfortotheirrespitechild’scareneeds.is a major issue, with many stating that existing
Challenges in Accessing and Navigating Support Systems
Carers struggle to access necessary support due to fragmented, complex, and confusing information
systems. Understanding and applying for available support is often complicated and time-consuming
, adding to the mental load of caring. This is exacerbated by the complexity of navigating support syste
ms like NDIS, healthcare, and education for their child. The mental and emotional load of paperwork anddvocacy adds to their stress and contributes to burnout.
“Betweenbattlingthethesystem.NDISIt’spaperworkdraining,andand advocatingit’s affectingformymyabilitychildtoatcareschool,for myI’mchild.”constantly
“Thestress.bureaucraticInstead of focusingprocesseson caringare soforcomplicatedmy child, I’mthatdrowningthey addin paperwork.“a whole new layer of
“Getting help should be easy, but it’s not. The system feels like it’s set up to make things harder for carers, not easier.”
“Information is not centralised, it’s hard to know what you can have access to because it’s in a hundred different places.”
43% of carers found it difficult to understand or locate information about the support available.
42% reported one of the biggest challenges is the lack of flexibility in support services.
Emotional and Physical Exhaustion (Carer Burnout)
Carers of children with disability frequently experience emotional and physical exhaustion due to the
continuous demands of caregiving. Many carers also take on advocacy roles, navigating complex system
such as NDIS, healthcare, and education, further adding to their stress and exhaustion.
“Financialworkhours.stressLittle astimeburnoutto look andafterpoorown healthhealth.”leaves carers unable to fullfill full time
“It’s not just about my child not getting the support they need; it’s that I’m left to pick up
basicthe pieces.supports.”The system isn’t working, and it’s exhausting constantly having to fight for
“I am a qualified teacher and had aspirations of completing my psychology
qualifications to become a psychologist, both roles that are greatly needed. Wit
h properl y targete d suppor t I coul d hav e fulfille d thes e role s i n th e communit y a
nd ensur ed my childr en ha ve t he ear ly interventio ns th ey ne ed to redu ce the ir supp
ortIweren’tneeds overwhelmedin the future. withInstead,catermyduties,own healthI wouldhasnowdeterioratedstruggle totoworksuchina anydegreecapacity.”that even
93% of carers reported emotional and physical exhaustion in the top three challenges faced as a carer.
Carer Gateway: A Need for Redesign
Carers expressed dissatisfaction with the current Carer Gateway system, which offers the same support
package regardless of the carer’s responsibilities. This one-size-fits-all approach does not meet the diverse
needs of carers, particularly those providing full-time care or those without informal support networks.
“There are so many steps to seek support or assistance, all require a lot of time and
energy. Something we already lack. After dealing with the NDIS, where we have t
o remain on guard, ready to advocate and defend our loved one/s, when we are defeat ed we are expected to place our trust in another government service where we disclose our sensitive information to another stranger, sharing significant vulnerabilities and a
wait the out come for ourse lve s to ac cess the sup port availa ble . So man y o f us are us
edisjustto puttingtoo much.”on a brave face / masking that the thought of another battle to prove our
“I’m a single parent and have health issues. I had to fight for a package and was then
offered two cleaning sessions and was told that I couldn't access anything else. It wa
s disheartenin g whe n I wa s hearin g fro m othe r parent s o f th e hig h leve l o f ongoi
ngtheysupportcould getandititemsso whytheynot.receivedBut I reallyand needthey itthemselvesto survive.”said they didn’t really need it
“Carers Gateway was traumatising.” 52% of carers indicated that the Carer Gateway system does not meet their needs, calling for more personalised support options.
Recommendations
To address these challenges, we propose the following:
Ensure that Carer Gateway support is truly personalised and tailored to the specific circumstances of1 each family, recognising that caregiving roles vary significantly in intensity and complexity.
Expand flexible respite care options tailored to the unique needs of families caring for children with2 disability.
Ongoing investment in peer support tailored specifically to carers of children with disability, offering3
both in-person and online opportunities for connection. This support not only reduces socia
l isolation and improves mental health but also provides vital peer-to-peer guidance on navigati
ng complex systems.
Increase the Carer Payment/Allowance to better reflect the true cost of caregiving.4
Introduce superannuation contributions to carer payments, similar to the planned introduction for5
Paid Parental Leave, recognising the long-term financial disadvantage faced by carers who reduce or
cease workforce participation.
Create a nationally recognised Carer Card offering meaningful benefits such as utility, health6 insurance and fuel discounts, grocery delivery, and other essential services.
Increase access to mental health support for carers, including subsidised counselling services and7 mental health services beyond what is available for the general population.
Ongoing investment in free and accessible education programs tailored to carers of children with8
disability to learn how they can support their own well-being and enhance their caregiving skills.
Develop a coordinated outreach campaign to carers of children with disability to increase awareness9
and utilisation of existing government platforms, such as Service NSW’s Savings Finder and other
support services for parents and carers.
Informed byFamilies
The survey captured responses from a diverse group of carers of children with disabilities, providing valuable insights into their backgrounds, caregiving experiences, and support needs:
Cultural and Regional Diversity: 11% of respondents identified as being from a culturally and linguistically diverse (CALD) background. 3% of respondents identified as First Nations. 77% of respondents reside in New South Wales, with 30% living in regional areas and 11% in rural communities.
Age and Family Responsibilities: 89% of respondents are aged between 35 and 54 years, in their prime working years. 43% of respondents reported caring for another person in addition to their child with a disability, reflecting the often multifaceted nature of their caregiving roles.
Child Demographics and Disability Types: 81% of respondents were caring for a child under the age of 12 years. 62% of respondents were caring for a child diagnosed with Autism.
Care Hours and Access to Support
34% of respondents provided 24/7 care for their child with a disability, while 32%
reported providing 41+ hours of care per week. An additional 18% provided between 31
and 40 hours of care weekly. 50% of respondents stated that they had occasional help with caregiving, while 28% reported having no support at all, including family or friends.
Perception of the ‘Carer’ Role: 19% of respondents indicated that they do not feel comfortable identifying as a “carer.” 46% only use the term “carer” when they need to access supports, highlighting the
complexities around the use of this term within the caregiving community.