Breaking the stigma around using respite

Providing support to people living with a neurological condition is no small task - from managing fluctuating symptoms, to cognitive changes, communication challenges or physical care needs, carers play an important but demanding role in the lives of a person with disability.  

Despite how taxing their role might be, many carers often hesitate to use respite care, particularly residential respite. This hesitation often stems from stigma, guilt or misconceptions. 

Respite is not a sign of giving up. It’s a practical, and an often-necessary part of long-term care. 

It’s time we challenged the stigma around respite in the disability sector, particularly for those impacted by neurological conditions, and start seeing respite for what it truly is - an act of care, not just for others but for ourselves. 

Respite is short-term support designed to give primary carers a break. It can take many forms: 

• In-home respite: An MSWA Support Worker can visit your home and provide care for a few hours.
• Community-based respite: Day programs offering social, therapeutic or recreational activities.
• Residential respite: The person with disability stays overnight or for several days in a MSWA Residential Respite home. 

Respite provides carers with the time and space they need to rest and recharge, attend to their own health, medical appointments, manage work or study commitments. It can also allow them to spend quality time with other family members or simply enjoy a moment of everyday life. 

For individuals living with a neurological condition, respite can be both enriching and empowering. It offers the opportunity to engage with others, enjoy a change of routine and experience new environments, all within a safe and supportive setting. 

MSWA Residential Respite brings additional benefits for both carers and the person with disability. For carers, it helps safeguard wellbeing by reducing stress and preventing burnout. For the individual, it encourages independence and supports personal growth through new experiences.  

Lisa, who lives with MS, uses MSWA Respite regularly: 

“It’s not just for my husband—it helps me feel more independent and connected.” 

It also helps prepare for the future by building familiarity with care settings, which can make any transition to long-term support smoother and less overwhelming as the neurological condition progresses. 

Despite its benefits, many carers resist using respite care. The reasons are complex and often emotionally charged: 

1. “I should be able to do this” 

Many carers internalise the idea that asking for help is a sign of weakness or failure. Caregiving, however, especially in the context of complex neurological conditions, is not something one person can or should manage alone. It's a full-time, demanding role often unpaid and under-supported. 

Sandra, who cares for her partner with Parkinson’s disease, shares: 

“Residential respite gave me time to sleep properly for the first time in months. He was safe and I came back stronger.” 

2. Guilt and fear of being misunderstood 

Carers may fear that others will judge them for taking a break assuming it means they don’t care enough, or worse, that they’re ‘giving up.’ Some worry their loved one will feel rejected or abandoned during respite stays. 

3. Trust concerns 

When someone has a neurological condition that affects communication, behaviour or cognition, it can be difficult to trust others with their care. Many families feel that no one else can understand the specific needs, triggers or routines involved. 

4. Lack of awareness or access 

Many people simply don’t know what kinds of respite services are available through programs like the NDIS, state disability services or non-profit organisations. Others have had bad experiences in the past or found options too rigid, inaccessible or unsuitable for neurological needs. 

1. No one can care for them like I can 

While it’s true that your care is unique, that doesn’t mean others can’t contribute meaningfully. Trained providers like the MSWA Residential team bring professional skills, fresh energy and can often help identify new ways to support your loved one. 

2. What if they don’t receive the right care? 

Neurological conditions often require tailored support. Carers may worry that the person won’t receive the right medications, positioning, behaviour support or seizure monitoring. These are valid concerns, especially when past negative experiences or lack of trust further fuel these fears.  

3. They’ll be upset if I leave 

Transitions can be difficult at first but with time and preparation, many care recipients adjust well.  

4. It feels like abandonment 

Many carers fear that sending their loved one to a residential respite setting, even temporarily, will feel like rejection or institutionalisation. The emotional weight of this decision is heavy especially if the person with disability has complex care needs or communication barriers. 

5. It’s too expensive 

There are often subsidized programs, government funding or community initiatives that offer free or low-cost respite. The first step is to ask what’s available. 

6. People will judge me 

There’s a harmful but persistent myth that ‘good carers’ should be able to do it all. Taking a break, especially one that involves overnight stays, can be wrongly interpreted as failure, weakness or even selfishness. Caring for yourself is not selfish. It’s a powerful act of responsibility and love. Advocating for respite helps others feel permission to do the same. 

If you’re considering MSWA Residential Respite for a loved one living with a neurological condition but feel unsure, here are some steps to help you move forward: 

• Start small - Trial a short stay, perhaps two nights or more. This helps everyone adjust and gives you a chance to evaluate the service.
• Choose neurologically aware providers - At MSWA, we have two purpose-built respite care homes and our staff are experienced in supporting people living with neurological conditions.
• Use your NDIS plan - Residential respite is often funded under Short Term Accommodation (STA). It can be used flexibly for up to 14 days at a time and sometimes longer under special circumstances.

By embracing respite, including residential options, we prioritise the health and dignity of both carers and those they support. It's time to challenge outdated perceptions, normalise seeking help and build a care culture where rest, renewal and shared responsibility are not just accepted but encouraged. Everyone deserves support and that includes carers. 
Respite is a valuable, empowering part of care not a crisis response. 

Rest isn’t a luxury, it’s a lifeline. Let’s change the conversation around respite and support care that lasts.