Life doesn’t always remain the same. Australian families face moments of significant change every day, whether it’s a loved one has just received an NDIS plan, a disability has developed, or a child with complex needs has transitioned out of school and into adult services. Finding the right way to adjust to new family dynamics with the help of NDIS assistance can be emotionally challenging and can be overwhelming – but it doesn’t have to be a journey done all by yourself.
This guide is for the families that are in the middle of that transition. It’s for the moms and dads that aren’t certain what they should ask for, the siblings that feel left behind, and the spouses who are secretly bearing an additional burden. We will go over what these changes are and how the NDIS can help the entire family unit, as well as some practical tips you can take in the here and now to help make the journey a little easier.
What Does ‘New Family Dynamics’ Mean?
It is clear that changing how your family functions starts once a disability is present in one of the family members. The changes are not always dramatic and will not always happen overnight. Sometimes they sneak up on you slowly, maybe a second appointment added to your schedule, maybe less work time, maybe a sibling who begins spending more time in their room to escape the sound and chaos.
Families don’t always anticipate or understand how roles change. A parent/carer becomes a primary carer. The teen assumes adult accountability. A partner picks up the emotional load, as well as a daily workload. Then, the extended family members step in to assist, or they don’t step in at all, and in either case, it’s difficult to handle.
For many Australian families, this is the real life-changing point where NDIS support makes a difference to their life as they adjust to their new family. The NDIS is not all about the person with disability. It is based on the premise that if a participant is supported well, the impact radiates to all people in their sphere of influence.
Families often have difficulties when transitioning to the NDIS.
There are common challenges that families can experience when transitioning into the NDIS.
It is important to state what families are really facing on the ground before discussing solutions. Some degree of clarity is required for proper treatment of the challenge.
Carer Burnout
This is one of the most prevalent, yet least talked about, disabilities in disability households throughout Australia. If one or two members of the caring team take on most of the responsibility without it being divided up properly, they soon become exhausted. Burnout for carers has a negative impact on mental health, relationships and ultimately on the care that the carer receives. It’s not a matter of weakness. It is a safe assumption that it is a consequence of an unsustainable situation.
How can children cope emotionally with the death of a loved one?
Living in a new reality, especially after a new diagnosis or if your disability has changed drastically, can be a form of grief. Parents mourn the loss of their child’s future. Siblings have a complex relationship of love and frustration and guilt. Partners are burdened with the relationship. They are all natural and normal emotions, but simply not given the attention they require very often.
Financial Pressure
A large number of family carers work fewer hours or take a break from the labour force in order to provide for caring needs. With this financial strain, as well as supports, equipment, and specialist therapies sometimes not funded by the NDIS, this puts a strain on families in all aspects of their life.
Information Overload
The NDIS system is indeed very complex. The time, patience and knowledge needed to navigate plans, service agreements, plan reviews, provider options and funding categories don’t exist in most families’ beginnings. Numerous Australian families report feeling lost or unsupported in the early months of involvement with the scheme.
Relationship Strain
Tension arises when family members are not “on the same page” with each other regarding roles, boundaries, and decisions. This is particularly important between a partner and the NDIS participant where they may have different ideas about what the NDIS participant might require, what is possible and who is to blame for what should be done.
Under the NDIS, assistance is provided to help support the whole family
The NDIS is designed to support the whole family.
This is the crux of the matter. Families can count on NDIS support when they understand what they can ask for and how they can get it. The NDIS provides reasonable and necessary supports to participants – and many of these supports directly, meaningfully impact on every person in the same household.
Respite Care and Short-Term Accommodation
Short-term accommodation, or respite care, is when the NDIS participant is placed in another setting for a short period of time. This could be a weekend, a week, or longer, depending on the plan. This is not an indulgence for the carer. It is a planned break through which long-term, sustainable caring is possible.
Support Coordination
A support coordinator will provide information to families about what is in the participant’s NDIS plan, and how the plan can be implemented. A good support coordinator is a guide, an advocate and a connector – for families who feel overwhelmed by the system, and many do. They assist families in selecting the appropriate team of providers and to ensure that the plan is implemented to the greatest extent for the benefit of the family.
Capacity Building
Funding in an NDIS plan may be provided to enable a participant to gain increased independence over time. This may include learning daily living skills, enhancing communication, making connections and employment assistance. As participants become more capable and confident, dependency on family carers will lessen – for everyone in the household.
Behaviour Support
A behaviour support practitioner can provide strategies for the home setting for participants who have complex behaviour needs. This helps to minimise the likelihood of challenging situations and provides family members with clear and consistent strategies to respond. This is a more secure and quiet family environment for all.
Psychosocial and Wellbeing Supports
Addressing emotional wellbeing is central to adjusting to new family dynamics NDIS assistance frameworks promote. Mental health support is available via the NDIS and Australian health system to both participants and carers. This is an area that many families don’t make the most of, and sometimes they think their priority should be providing practical support to the participant first. However, emotional wellness is not a choice.
Practical Steps for Families Right Now
These steps can be taken when you’re starting out with the NDIS, or you’re mid-plan and thinking, “Yeah, but…?
Address difficult issues up front.
Don’t wait for a family member to have a breakdown or for a relationship to deteriorate to discuss how things are. Regularly talk to the person in the house, as well as their siblings, partners, or other extended family members.
Know your rights.
Request a plan review if changes in circumstances. The choice of providers is yours. If the system is not working for your family, you have the right to independent advocacy. These rights do exist; make use of them.
Link with Carer Gateway.
A federally funded Australian programme that offers counselling, peer support, practical coaching and emergency respite to carers. It is not part of the NDIS and accessible to family carers nationally. It’s easy to use, and it’s really helpful.
Involve brothers/sisters.
Many siblings of people with a disability feel excluded from the NDIS. Promoting their involvement in age-appropriate conversations of what is going on, what the plan involves, and how the family is coping helps them feel valued and minimises the sense of distance which can grow over time.
Plan ahead.
New family dynamics: NDIS assistance programs can help families plan for the future – permanent housing, future care arrangements, Supported Independent Living, and transitioning from family care. Have these discussions with your support coordinator or local area coordinator before they’re needed.
A consistent engagement with the NDIS will make a difference. Why?
The NDIS is not a one-way street. It offers the families that are actively involved, attending plan reviews, communicating effectively with health care providers and addressing concerns as they emerge, a reward. NDIS plans are a living, changing plan, and families who focus on the plan as a plan, rather than a document, consistently report positive outcomes for their person and their family.
When everybody in the family feels valued, supported and part of the whole, adapting to new family dynamics with support from the NDIS is best. It’s not simply a matter of the participant’s objectives. It’s about building a home that everyone can thrive in.
If you or your family are currently in transition (e.g. a new diagnosis, a change in the support needs of the person, a carer is struggling), contact your local NDIS provider or your support coordinator. Help is there. It’s simply a matter of asking for it.
FAQs
What is the purpose of NDIS support in making change in family dynamics?
NDIS services are available to help families when someone in the home has a disability and can be used to pay for practical services like respite care, support co-ordination, therapy and capacity building. The services decrease carer stress, enhance family communication and wellbeing and increase the potential for increased independence over time. The entire household benefits, not just the name on the NDIS Plan.
Is there support available for family members of an NDIS participant?
Your family will not receive funding for its services directly through the NDIS. Carers in Australia, however, are able to access Carer Gateway, a federally funded counselling, peer support, coaching and respite program, free of charge. Some supports included in a participant’s NDIS plan focus directly on supporting the carers in the person’s home, for example, behaviour support training, family capacity building and carer coaching.
What is the role of the NDIS to support families in reducing carer burnout?
Respite is also referred to as short-term accommodation and is a type of NDIS-funded support that provides carers with a planned and structured break from their caring responsibilities. This is one of the best supports that can be offered to prevent carer burnout. Support coordinators can also assist families to expand their circle of support – to ensure no one is responsible for everything. Early recognition and application of supports will avoid further deterioration of family functioning.
What would happen if there were a significant change in a family’s circumstance?
You can ask for an unscheduled plan review with the NDIA if there is a change in your family situation, such as a primary carer becomes unwell, a participant leaves school and goes into adult services or a change of address. The participant’s support needs are then reviewed again and the plan adjusted during the review. If there has been a material change or one is likely to occur, the families should not await the scheduled review.
What are the skills and attributes required of service providers to work with families during transitions?
Children and young people with siblings who are involved in the NDIS can have mixed feelings, such as pride, confusion, resentment and loneliness. It’s okay to feel this way, and it’s a feeling that needs to be acknowledged. Age-appropriate family discussions, family participation in decisions and access to sibling support groups, specifically those for siblings (for example Siblings Australia), can all help. A family therapy session or family training session may also be funded and included in some NDIS plans and may involve siblings.
Do all people who are NDIS participants and experiencing family changes have access to support coordination?
Many people with plans have support coordination as part of their plan, especially for people who have complex or multiple support needs. Families with significant transitions, like shifting from family home care to supported independent living, or families that have recently been diagnosed, should be able to request supported independent living be integrated or expanded during their next plan review. The job of the support coordinator is to help families to understand what choices they have, link them with the appropriate providers and make this plan work.
If an Australian family is interested in seeking support for their family from the NDIS, what is the first step for them?
If your family member hasn’t got an NDIS plan, you should first talk to the NDIS on 1800 800 110 or visit ndis.gov.au to see if they are eligible, and start the process of requesting access to the plan. If a plan is already in place, the next step is to discuss the current planning challenges with your family at the next review and/or with your support coordinator or local area coordinator about what other supports can be implemented. Contact Carer Gateway on 1800 422 737 for carer-specific support.
