Navigating respite care

Caring for a loved one with autism is a full-time commitment that can be both rewarding and demanding.

To support carers in balancing their responsibilities and maintaining their wellbeing, respite care services offer a crucial lifeline. 

Respite care offers a temporary break from the daily routine and carer responsibilities, which can be particularly intense and demanding for parents and carers. It's essential to recognise the benefits respite care can provide to carers and children. 

What is respite care?

Respite care involves temporary caregiving arrangements made for children with autism or additional needs, allowing regular carers a break to rejuvenate. This care can be provided in various settings, including the child's home or specialised facilities. The duration of respite care can range from a few hours to several weeks, depending on the family's needs and the services available.

Respite care can be organised through professional services or informally through friends and family. Some families also integrate community recreational activities as informal respite care, providing their children valuable social and learning opportunities while giving caregivers a much-needed pause.

Types of respite care

Respite care can be broadly categorised into the following types:

In-home respite care

In-home respite care is one of the most flexible services available. It involves a support worker coming to your home to care for your child. This can be for a few hours once a week, for longer periods, or even overnight. The primary advantage of in-home respite is its comfort to the child, who remains in a familiar environment. Whether staying indoors or engaging in outings like a visit to a local park, the tailored care aims to suit your child's needs and your schedule.

Centre-based respite

Centre-based respite services provide care at a dedicated facility. These centres often function like clubs, offering structured group activities, outings, and holiday care programs. They are particularly beneficial as they provide social interaction opportunities for children in a safe, structured environment, helping them build social skills and engage in recreational activities.

Community access respite

Community access respite focuses on helping children develop independent living and social skills by involving them in community activities. This type of respite might be linked with local community centres or health centres and often includes group activities. Additionally, support workers may accompany families to help integrate into community events, creating a sense of belonging and inclusion.

Short-term accommodation

Also known as overnight or residential respite, this service involves a child staying at a facility such as a residential care home or a cottage-style respite house. It can be particularly useful for longer breaks, such as over a weekend or during school holidays, providing extensive relief for caregivers and a variety of new experiences for the child.

Informal respite care

Not all respite care has to be formal. Families often rely on a network of friends and relatives who can provide temporary care. This can be as simple as having a grandparent or a friend looks after the child for an evening, allowing parents or carers the opportunity to recharge. While less formal, the support from family and friends is invaluable, providing trusted care without the need for waiting lists or formal arrangements.

After-school and vacation care

These services cater specifically to school-age children, offering fun, inclusive activities during after-school hours or school vacations. Often supported by educational institutions or organisations like the YMCA, these programs support inclusivity through initiatives such as the Australian Government's Inclusion Support Program. They provide safe recreational opportunities and socialisation for children in a structured environment.

Recreational activities

Local community groups and clubs, such as music classes, library story times, Scouts, and sports clubs, offer additional recreational respite options. These activities engage children in enjoyable and stimulating environments, allowing them to interact with peers and develop new skills.

Camps

Some organisations run camps specifically designed for children with additional needs. These camps provide comprehensive care and a range of activities tailored to children with disabilities or autism, ensuring they enjoy a fun and safe experience away from home.

Mainstream child care

Mainstream childcare facilities like long day care, family day care, and occasional care services also play a crucial role in providing respite care. With support from the Inclusion Support Program, these services ensure children with additional needs can integrate seamlessly into mainstream care environments, promoting inclusivity.

Emergency respite care

Emergency respite care is available in unforeseen circumstances. This service can be accessed through hotlines like the Carer Gateway and is typically available around the clock. It is designed to provide immediate relief in situations such as sudden illness of the caregiver, ensuring the child's needs are met promptly and safely.

Benefits of respite care 

Respite care offers many benefits not just for the primary carers but also for the child and the entire family.

For parents and carers

• Mental and physical health: Regular breaks can help prevent carer burnout, reduce stress, and promote physical health.
• Personal time: Respite care provides opportunities for caregivers to engage in personal interests and social activities or complete tasks that are difficult to manage alongside constant caregiving.
• Strengthened relationships: By allowing time away, carers can better maintain and nurture relationships with partners and other children, which might otherwise be strained due to the demands of caregiving.

For children

• Social skills and independence: Spending time in new environments or with different people can help children develop social skills and a sense of independence.
• Enjoyment and stimulation: Respite settings often provide fun and educational activities that can enrich the child’s experiences.
• Routine variation: A change in daily routine can be refreshing and stimulating for a child, providing them with new experiences and learnings.

Accessing respite care

Funding respite care through the NDIS

For many families, the National Disability Insurance Scheme (NDIS) is a vital resource for funding respite care. If your child with autism is eligible for NDIS, respite care, referred to under the NDIS as 'short-term accommodation and assistance', can be included in your child’s plan. This covers costs associated with physical care and includes supports that help the child engage in social and community activities, enhancing their skills and independence.

To include respite care in an NDIS plan, families should discuss their needs with an early childhood partner or a local area coordinator. These professionals can guide you through setting up a plan that includes appropriate support tailored to the child’s and the caregiver's needs.

Options if not eligible for NDIS

Not all individuals will qualify for the NDIS. For those who do not, there are other options available to manage the costs associated with respite care. One primary resource is the Carer Gateway, a national online and phone service that provides practical information and resources. By contacting the Carer Gateway, caregivers can access advice on alternative funding and support services, ensuring they receive the necessary respite.

How to find respite care services

Finding the right respite care involves several steps:

• The Commonwealth Carer Respite Centres provide free and confidential information on local carer support, disability and community services. You can contact your nearest centre by phoning 1800 052 222 during business hours and 1800 059 059 for emergency respite support outside standard business hours.
• Contact the Carer Gateway: available Monday through Friday, 8 a.m. to 5 p.m., this service can provide valuable information on respite care options and how to access them.
• Consult with local councils and state services: your local council or state/territory disability services can offer listings of licensed and accredited respite care providers in your area.
• Speak with NDIS professionals: even if you are not eligible for NDIS support, discussing respite care options with an NDIS professional can provide insights into alternative services and supports.

Advocating for comprehensive support

While navigating the various options for respite care, carers should also advocate for comprehensive support. This involves securing financial support and ensuring that respite services are high quality and appropriately meet their child's needs. Joining support groups and networks can provide additional insights and advocacy avenues to ensure that services continue to evolve and improve.

It's important for caregivers to view respite care as a normal and beneficial part of a comprehensive care strategy. It helps them maintain their wellbeing and provides better care for their children. By embracing and promoting respite care, communities can significantly contribute to the positive dynamics within families, creating environments where all members can thrive.