For many of us family is everything, and for those lucky enough to still have our parents with us it is something we don’t take for granted. We know their passing will leave a huge void in our lives.

At Lighthouse Disability, we work closely with parents and families of people with disabilities daily. Their knowledge, understanding and experiences guide us to ensure consistency and the best possible quality of life for our clients.

Parents are generally the next of kin – and the people who are the main reference point for medical, emotional, social and financial needs related to their loved one. When our clients’ mums and dads pass away or become unwell, these responsibilities usually move to siblings or extended family members.

Overwhelmingly, these people are extremely supportive and willing, However, they are not necessarily equipped to deal with this significant and new role.

Right now, as we await the federal government’s response to the NDIS Review, Australia is at a junction when it comes to evolving how we support people living with disabilities.

In its recent white paper, Siblings Australia highlighted how siblings provide a crucial role in the lives of their brothers and sisters with disabilities, which has not been fully recognised.

This is, absolutely, about supporting the person with the disability but it goes further than that.

The benefits of educating, enabling and supporting siblings of people with disabilities is important for these families and vitally important for the sustainability of the sector and broader community.

So, what could increased support for siblings look like?

To start with, there is very little government data on siblings of people living with a disability. Consultation and collecting information about this cohort would be a sound step forward.

Sisters and brothers of people with disabilities provide a lot of support, particularly as parents age, and this contribution should be acknowledged.

Increased education for siblings is needed across the sector to engage with them when they need it around the NDIS, including financial management as well as health, education, housing and emotional needs.

Introducing siblings or designated extended family members to avenues for support and advocacy so they and their families can be more proactive, is also paramount. This will help ensure that when the need arises, they are as prepared, as supported – and as supportive – as possible.

Of course, there are many types and levels of disabilities, and it is important to understand that each family and each person is different.

At Lighthouse Disability, we are seeing more and more that ageing parents of people with disabilities are considering the next stage, including moving guardianship to a sibling or another family member. It is our privilege to work alongside parents, siblings, cousins, nephews, nieces and other extended family members to support this transition. Most of all, it is wonderful seeing how this helps benefit our clients.

Whether our clients are living in the family home or in supported independent housing, parents are generally the second longest relationship our clients have in their lives. The first being their siblings.

If we are serious about sustaining support for people with a disability across Australia, investing in the siblings of people with disabilities must be a key element of the Government’s response to NDIS Review and sector reform.

Andrew Ellis is the CEO of Lighthouse Disability.