Supporting the people who support others — information, resources, and practical guidance for families navigating disability support in Newcastle and the Hunter Region.
Families and carers are often the backbone of disability support — but the system doesn't always make it easy to navigate, and the emotional and practical weight of caring can be enormous. This page is for you: parents, partners, siblings, adult children, and anyone else who provides ongoing care for a person with disability.
The NDIS is designed to support the person with disability, but their plan directly affects you too — what supports are available, how much relief you get, and how much is still left to you. Understanding how the system works helps you advocate effectively in planning meetings, make sense of your family member's plan, and access what you're entitled to as a carer.
We work with families every day across Newcastle and the Hunter Region. This page covers the things families most commonly ask us — from understanding the NDIS to knowing your rights as a carer, accessing respite, navigating major life transitions, and looking after yourself.
If a family member has recently been diagnosed or is applying for the NDIS for the first time, our plain-language NDIS guide is the best place to start.
The NDIS recognises several roles for families — but there are also important limits designed to protect the participant's independence and rights.
A family member can be appointed as the participant's Plan Nominee — allowing them to act on behalf of the participant in NDIS matters, including planning meetings and NDIA communication. This requires NDIA approval and the participant's consent where they have capacity to provide it.
Family members can attend NDIS planning meetings as a support person. This is strongly recommended, particularly for first plans. Two perspectives on the participant's needs, goals, and daily life produce better plans than one. Bring written notes — planners appreciate documented evidence.
If the participant consents (or if you are their Nominee), you can help review plan content, check that goals are reflected, understand what each budget can fund, and engage providers on their behalf.
Families often maintain regular contact with providers about scheduling, progress, and concerns. We welcome family involvement and actively communicate with carers — with the participant's consent and in a way that keeps the participant's voice central.
Families play a crucial role in watching for signs that a provider is not delivering quality support, that a worker's conduct is inappropriate, or that the participant's needs are not being met. Raising these concerns — with the provider or the NDIS Commission — is a legitimate and important carer responsibility.
Informal care — the daily help you already provide as a family member — is recognised in NDIS planning as existing support. The NDIS is not designed to replace this but to complement it, providing funded support where informal care alone is insufficient or unsustainable.
The NDIS prioritises participant choice and control — which means some things are specifically reserved for the participant themselves.
| Action | Family / Carer | Notes |
|---|---|---|
| Attend planning meetings | Yes | With participant's agreement. Bring written documentation of needs and goals. |
| Speak on participant's behalf at NDIA | With appointment | Requires formal Plan Nominee appointment from NDIA. Participant must consent where they have capacity. |
| Choose providers for the participant | With consent | Participant choice and control is central to the NDIS — families can advise and support but not override participant preferences where the person has capacity. |
| Be paid as a support worker | Limited | Family members who live with the participant generally cannot be paid under agency or plan-managed plans. Non-resident family members may be paid in some circumstances. Self-managed plans have more flexibility. |
| Access participant's NDIS portal | As nominee only | The myGov portal is for the participant. Nominees can be given access. Do not use the participant's login credentials — this is a breach of NDIA rules. |
| Provide input on plan goals | Yes | Family knowledge of the participant's daily life, barriers, and goals is valuable input for planning. Written supporting statements from family members carry weight with NDIA planners. |
| Report concerns about a provider | Yes | Family members can contact the NDIS Quality and Safeguards Commission directly if they have concerns about a provider's conduct or a worker's behaviour. |
| Request a plan review | As nominee | Participants can request their own plan review at any time. Family nominees can request on their behalf. A Support Coordinator can also help initiate a review. |
The Carer Gateway is a Commonwealth-funded service providing free practical support, coaching, and respite for unpaid carers across Australia — including in Newcastle and the Hunter Region. It is separate from the NDIS and does not require the person you care for to be an NDIS participant.
If you are providing care and feeling overwhelmed, isolated, or close to burnout, call the Carer Gateway first. Their services are designed specifically for people in your situation.
Free one-on-one sessions with a carer coach to help you manage your caring role, set goals, and build strategies for sustainability.
Facilitated peer support groups connecting carers with others in similar situations — reducing isolation and building community.
Short-notice respite when a carer is in crisis — illness, family emergency, or mental health crisis. Available 7 days a week.
Funded respite breaks of varying lengths, planned in advance to support carer wellbeing and prevent burnout.
Free courses and workshops on topics relevant to carers — manual handling, medication management, communication strategies, self-care.
Free financial counselling to help carers understand entitlements, manage the financial impact of caring, and plan for the future.
Respite is not a luxury — it is essential for sustainable caring. Multiple funding sources can help families access regular breaks.
A support worker comes to the family home and provides care while the family carer takes a break — whether for an afternoon, a day, or overnight.
NDIS Core SupportsThe participant goes out into the community with a support worker — to an activity, venue, or program — while the family carer has time at home without caring responsibilities.
NDIS Core — Community ParticipationThe participant attends a day program or activity centre for a set number of hours or days per week, providing reliable scheduled relief for the carer.
NDIS Core SupportsThe participant stays in a supported residential setting for 1–28 days per year — giving carers an extended break. This is the most intensive respite option and requires NDIS approval.
NDIS Core — STA/RespiteUnplanned respite arranged urgently when a carer is in crisis — illness, hospitalisation, mental health emergency, or family crisis. Available through Carer Gateway and NDIS emergency provisions.
Carer Gateway + NDISFunded through Carer Gateway (not requiring NDIS participation), these are pre-arranged respite breaks ranging from a day to a week — allowing carers to travel, rest, or attend to personal needs.
Carer Gateway (free)The most stressful times for families are often major transitions — when a child leaves school, when a family member moves out of home, or when the carer's own capacity changes.
The transition from school to adult life is one of the most significant — and most poorly supported — transitions for young people with disability. School-based supports end; adult NDIS supports must be activated. Start planning with your family member's school and NDIA at least 12 months before leaving. The NDIS Transition to Employment and Life (TELA) approach can help.
Many participants with disability wish to live more independently — in their own home with support, or in shared supported accommodation. This is a major planning conversation involving SIL (Supported Independent Living) and potentially SDA (Specialist Disability Accommodation). Start exploring options 1–2 years ahead. Safe Hands Support Coordination can help navigate this process.
When a carer ages and their own capacity to provide care reduces, this requires urgent planning. The NDIS recognises changes in informal support as grounds for a plan review. Families in this situation should contact the NDIA immediately and engage a Support Coordinator to help develop alternative support arrangements.
When a carer becomes ill, hospitalised, or experiences a crisis, emergency respite is available through the Carer Gateway (1800 422 737). The NDIA also has emergency provisions for unplanned changes in support arrangements. Having a documented contingency plan before a crisis happens protects everyone — ask your Support Coordinator to help create one.
When a person with disability turns 18, parents no longer have automatic legal authority over their decisions. For people who need support with decision-making, options include Supported Decision-Making agreements, NDIA Plan Nominees, or formal Guardianship through the NSW Civil and Administrative Tribunal (NCAT). Get independent legal advice on which approach fits your situation.
Families of people with disability need specialised estate planning — standard wills often inadvertently affect eligibility for government supports. A Disability Trust (Special Disability Trust or Discretionary Trust) may be appropriate. Seek a solicitor with experience in disability estate planning and consider the Public Trustee NSW for long-term fund management.
Young carers — children and teenagers under 25 who provide care for a family member with disability — are among the most overlooked and under-supported people in the caring system.
Young carers in Australia often miss school, social activities, and their own development milestones to provide care. They may feel isolated, responsible beyond their years, and unable to speak about their situation. Research shows young carers are at significantly higher risk of educational under-achievement, mental health challenges, and social isolation.
If there is a young carer in your family, these resources provide specific support:
We believe family involvement, done well, leads to better outcomes for everyone — including the participant.
With the participant's consent, we keep families informed — progress updates, scheduling changes, and any concerns that arise. We are accessible and responsive to family questions.
We work with families to understand the participant's broader context — what carers are already doing, what the household routine looks like, and how our supports can complement rather than duplicate what families already provide.
Through our Family Support service, we help families learn strategies for managing challenging behaviour, communicating with their family member, and understanding the disability — building long-term carer capacity.
Families trust us with the people they love most. We take that seriously — thorough worker screening, consistent rostering, transparent incident reporting, and proactive communication when anything changes.
Whether your family member is leaving school, moving toward independence, or entering a new life stage, our Support Coordinators work with families to plan well ahead and avoid crisis transitions.
We respect that the participant's choice and control comes first — we work with families in a way that honours the participant's voice, even when family perspectives differ. Where conflict arises, we navigate it with care and transparency.