Chapter 5Respite care and short-term accommodation
5.16During this inquiry, the committee heard evidence regarding respite care and its importance, particularly for carers of participants. National Disability Insurance Scheme (NDIS) respite services, also termed 'Short Term Accommodation' (STA), are an important part of NDIS participants' plans.
5.17'Respite' or 'STA' refers to the provision of temporary care to a person with disability by a person or agency other than their primary carer(s), who are often family members or close friends. There are many potential benefits of respite, but it is intended primarily to offer informal carers regular breaks from caring.
5.18In the committee's First progress report on the implementation and administration of the National Disability Insurance Scheme (2014), NDIS participants and carers described the difficulty of securing consistent and appropriate respite services. Ten years later, the committee continues to receive evidence that accessing and maintaining respite services is a challenge for carers.
5.19Various respite care programs are available through a range of Australian, state and territory government initiatives, such as for carers of elderly people through My Aged Care or for foster carers as part of a child protection placement.
5.20The benefits of respite include:
giving informal carers a break from looking after participants, and vice versa, to help prevent caring arrangements from breaking down;
'practice' for participants transitioning to supported independent living (SIL) or other accommodation arrangements; and
allowing participants to meet new people, engage with community and where appropriate, learn new skills.
5.21Some respite providers also offer 'capacity-building group activities' such as art therapy, group fitness activities, or day trips.
Current NDIS guidelines on Short Term Accommodation
Everybody needs a break sometimes! Short-Term Accommodation (STA) is a way of providing respite care that allows both you and your carer to have a break or a change of scenery.
5.22Under current guidelines, NDIS participants in the 'Core support' category (the highest level of needs) can access up to 28 days of STA annually. This can be used flexibly, such as in two blocks of 14 days or one weekend per month. Funding is determined by the level of care participants require. Those with the most complex needs may access the entire 28 days, while those with simpler needs may receive fewer funded STA days.
5.23STA typically involves funding the participant to stay outside their homes in a group setting in specialist accommodation, managed by an NDIS-authorised provider. With approved STA, NDIS pays for necessary disability supports, including 24-hour care. If a participant has high needs, this may be one-to-one individual care, but this is rare. Where participants need longer-term accommodation, other NDIS programs such as SIL or Medium-Term Accommodation are available.
5.24While the NDIS advises participants and families to coordinate STA with their NDIS support workers or LACs, finding and booking suitable STA is often the carers' responsibility, requiring careful research and significant forward planning.
5.25As a result, evidence to the committee indicates that accessing STA can be very stressful for participants and carers, adding another layer of NDIS bureaucracy to navigate. There are both community-level and system-level challenges to securing STA, which are explored below.
Community-level challenges
Carer burnout
Caring roles are extensive, time consuming and are distinctively different from generalised familial support. Proactive steps taken to differentiate between these two groups would enable better identification of carers and the impact that caring has on their livelihood.
5.26The committee has heard about the physical and psychological tolls experienced by informal carers of people living with disability. One of the ways this can be mitigated is though STA. From an economic standpoint, the costs of providing STA may be lower than the ultimate cost to the health system should full-time formal supports be needed because an informal care arrangement has collapsed. For example, in her submission Ms Lynda Lett wrote:
My husband is my only informal carer and works full time. He requires respite to be able to continue looking after me long term. In nearly 30 years of marriage he has only had a total of 4 weeks respite. He is burnt out and suffering under carer burden. It is reasonable, necessary and value for money to provide my husband with respite thereby reducing my need for formal supports otherwise.
5.27Ms Nick Avery of the South West Autism Network told the committee that she sees families breaking down where they not have any reprieve from the exhausting work of caring:
We are seeing parents who are at breaking point who are not coping. We are also seeing parents who have talked about relinquishing their child to state care. This is not a situation that we want families to be in. We need to see a lot more supports for the participants. We also need to see a lot more informal support for their carers.
5.28Carers WA reported similar burdens on some of their carers:
There is a prevailing over-reliance on informal supports within the NDIA and NDIS, whether the NDIS participant is living in the same home as their carer, or the NDIS participant is largely independent and living in their own home. Despite this, carers report that the NDIS does not provide an allocation of funding for them to take a break … This reliance on informal supports then results in carers becoming burnt out and no longer being able to continue in their caring role.
5.15A submission from the Darwin Community Legal Service noted that even the process of applying for STA can be draining for carers:
Situations include family members facing carer burnout to the point of considering relinquishing care. Due to insufficient supports while an appeal is underway, carers may face gruelling choices such as whether to cease employment. Participants might have no other 'option' than hospitalisation if their SIL supports are deeply insufficient and the appeal is ongoing.
Inclusivity and diversity
People with disability are diverse and it's important that the recommendations of the NDIS review reflect our diverse needs and preferences.
5.29For Aboriginal and Torres Strait Islander people, and other culturally and linguistically diverse people with disability, language barriers and fears around cultural safety can impact whether they engage with the NDIS. A witness told the committee in a previous inquiry:
For people who don't have English as a first language, it's largely incomprehensible … many of our families don't have access to a computer or don't have computer literacy. The language and the terminology used by the scheme can be very confusing for people in our region. Even using the term 'participants' is not something that our clients and families are used to – or 'respite' being short-term accommodation. All of those things create further barriers to people being able to access the scheme and understand the sort of support that they can get through the scheme.
5.30For example, pricing for STA is determined by the NDIS Pricing Arrangements and Price Limits guideline, a 24-page document which uses complicated economic and bureaucratic language. This document is also frequently updated, incorporating changes to STA rules, sometimes every few months.
5.31Some people can find it challenging to access NDIS information because of their disability. Representing Deafblind West Australians, Ms Kirsty Lim told the committee:
There is a lot of English terminology and words with the NDIS and it's very difficult for us to understand, as our language is in Auslan. Deafblind uses Auslan and that makes communication much simpler. They also use gestures, which makes it easier to understand. We find it really difficult to read written English. We don't understand what is being said. It is too hard to gain access to the written information. The terminology can become quite complex.
5.32Another significant challenge for carers is finding appropriate STA across a diverse spectrum disabilities, ranging from people with psychosocial and psychological disabilities to severe intellectual and physical disabilities. Some STA providers may only accommodate children or adults; housing may range from small homes to dormitories to hotel-style facilities; or may only cater to people with specific disabilities or disorders.
5.33Each potential STA arrangement means carers must assess the suitability of care offered, which categories of NDIS participants are accepted, whether costs would be covered by a particular 'bucket' of NDIS funding in their plan, provision by location, and calendar availability.
5.34In previous committee inquiry, Ms Karna O'Dea pointed out that group accommodation may not suit certain participants:
My boy goes to a very good respite provider in Canberra. There used to be two respite cottages. One is now occupied by two people who have a similar condition to him. But that means they are mixing the big ones with the little ones. My boy is six foot two. I don't really want him sharing a respite place with kids who are younger because if he pushed them or knocked them over it would hurt them.
System-level challenges
Terminology
5.35Over the last decade, NDIS terminology has evolved alongside better understandings of disability, including the terms 'respite', 'STA', and more recently 'STA and assistance'. The Tune Review reported that there is a direct relationship between successful planning outcomes and the 'ability of the participant and their family or carer to "speak NDIS"', including negotiating for respite. For example:
[I]f a family asks for 'respite' in a plan that request is denied on the basis the plan is intended to improve the capacity of the person with disability and the family will get sufficient rest periods because the plan will provide for sufficient services to meet the participant's needs. On the other hand, if the family or carer asks for additional paid care support in the family home or 'short-term accommodation', they will often receive supports which have a similar effect.
5.36The Tune Review also noted that the term 'respite' can be problematic because 'the word can be perceived as promoting the incorrect, but unfortunately prevalent, notion that people with disability are a burden on their families and loved ones'.
5.37A witness similarly told the committee in a previous inquiry, '[r]espite is a dirty word—it was used in that way—because the connotation was that it was an opportunity for the person to escape, to get away from the person they are caring for'.
5.38Despite this, after its deliberate omission for years, the term 'respite' was reintroduced to the NDIS Price Guide revision of December 2019. Evidence shows simple changes in terminology can affect NDIS outcomes. Carers WA discussed the confusion for carers in using the right terminology:
While the NDIA previously acknowledged this issue and responded by reintroducing the term 'respite' into the NDIS price guide, within the 'Short Term Accommodation and Assistance (including the provision of respite care)' item; carers have since reported significant difficulty in getting this item added to a NDIS plan, as well as this item being amongst the first to be cut from a plan if it is reduced.
5.39From the Department of Communities Tasmania, Ms Ingrid Ganley told the committee that this issue during the planning process is ultimately counterproductive:
There is a language issue at the moment in how we are transitioning from the old system into this new system—what state governments call services, what people are used to getting and how that translates into the new plan—and people miss out. Respite is a good example, and there is work being done around changing the language about that. We called it respite; it is called short-term accommodation at the moment. Some people did not know that respite was that, and so things did not get put into the plans … Ithink that is a missing step that the draft plan will introduce.
5.40In addition to the challenges in understanding 'NDIS language' the committee heard evidence that even requesting respite can make informal carers feel stigmatised. Ms Jenny Karavolos of the Disability Advocacy and Complaints Service of South Australia told the committee that some carers have received negative feedback from the NDIS when seeking respite. Ms Karavolos gave evidence that comments such as, 'you don't need respite; you should spend more time with your child' and 'you need a behaviour plan, not therapy' indicate ignorance on the part of NDIA staff, highlight the inequality between the NDIA and participants, and suggest that the NDIA does not take ownership of its own mistakes.
The planning process
5.41Evidence to the committee suggests that respite is not automatically considered when compiling NDIS plans. The onus rests on participants and carers knowing about STA and advocating for its inclusion. Ms Emily Caska of Down Syndrome New South Wales told the committee:
[I]t is really hard for our families to know what's available and then articulate what they are wanting … to this day Mum has never been afforded any accommodation funding through the NDIA. She doesn't know what it's about. She doesn't know that she can get it.
5.42Mr Paul Coates commented that in planning meetings, the emphasis is on securing supports for the participant and the need for respite can get lost or forgotten in the process:
[I]t is down to the planner or the family speaking up for themselves. Often the family won't speak up for themselves because, understandably and rightly, they are focusing on their family member to get the supports for them. So I think it's got to be a fixed question, and an encouragement for the planners and the family to think that through during the planning process.
5.43Negotiating the Carer Gateway may present its own challenges in securing appropriate respite services. Ms Nick Avery noted, 'there is a very small amount of funded support available for some people through the Carer Gateway, but it's still not sufficient and it's only in specific circumstances that it is given'.
5.44However, because it is separate from the NDIS, Carers WA revealed that some carers circumvent the NDIS system altogether and rely on STA support though the Carer Gateway alone because it is an easier process to navigate.
5.45If STA applications are denied, participants and carers have the right to ask the NDIA for a plan review, assuming they included STA provision in their original plan. If they are unsatisfied with that process, they can then take their concerns to the Administrative Appeals Tribunal (AAT). However, many witnesses have described the AAT appeals process as lengthy and frustrating, with no guarantee of successful plan modification. The ABC reported in November 2022 that:
… applications for reviews of NDIS decisions roughly quadrupled in the last year, and that the National Disability Insurance Agency (NDIA) spent almost $22 million on legal fees during the 2021 financial year after a 400percent increase in complaints.
5.46STA providers also face the challenge of providing informal support for the mental health of exhausted carers. Giving evidence to a previous inquiry as a provider, Mrs Simone Burke stated that, while respite provision is valuable, the disruption to routine can lead some carers to seek their own support from providers:
They've been on this hamster wheel of 24/7 care for sometimes 15, 16 or 17 years and now the NDIS has opened up these amazing opportunities to access day support, short-term accommodation et cetera, but they don't know what to do with that free time and their mental health unravels. We have someone who's on the phone to them, including ourselves, sometimes seven days a week, because their psychological wellbeing is quite fragile and they don't know how to fix that.
Thin markets
The process of finding the right STA setting to meet your needs can be overwhelming.
5.47In rural, regional and remote areas, the lack of a diverse pool of NDIS‑approved STA providers presents a barrier to access. Difficulty in accessing disability supports (and often other allied health support services), referred to as 'thin markets', places more pressure on informal carers to carry on without respite. Disability Advocacy NSW described those living with disability in rural and regional areas as 'double disadvantaged'.
5.48One witness told the committee of the disparities between urban and country life when accessing even basic items, let alone when engaging with a bureaucratic system such as the NDIS:
People out bush are largely concerned about food, shelter and safety, and some items—things like swags and blankets—which are considered to be not reasonable and necessary under the NDIS, are the things that people want. So we find that our families often don't engage with the scheme because of that.
5.49If people in remote areas do engage with the NDIS, there may be no services to access. In the Anangu Pitjantjatjara Yankunytjatjara Lands for example, one witness noted:
You need a lot of understanding of the way that people live, of culture, and of families and the way families operate to be able to work out there successfully. It's very expensive to get out there, and when you're working with clients and families—who are sometimes disengaged from what the scheme can offer and who have other priorities—you might travel 700[kilometres] out to a community to see a participant and find that the family have all gone to another community to attend a funeral. There are lots of complexities around delivering services out on the lands.
5.50STA provision for diverse disabilities can also be difficult to access. In its submission, Tandem noted that, 'family and carers in mental health require a range of respite options and not traditional forms in that the participant has a break away, that respite option is rarely taken up with the participant with a psychosocial disability'.
5.51Accessibility may also be limited to the types of STA available in a particular area. For example, some only provide daytime care for participants. Ms Webster told the committee of the need for several types of STA:
Having daytime respite is important, and if it's going to be really practical, that daytime respite needs to be so that the person can get respite for the hours that the carer is working … If the carer has to get up on a regular basis, having overnight respite either in the home or in another facility is really important. Having the ability for the carer to actually go on a holiday for a week or two weeks so they can have a real break from caring is another issue again.
5.52For some NDIS participants and families, where STA provision is absent, they must seek other providers of respite. For example, Very Special Kids provides respite to qualifying families, but only for children who are deemed to have a progressive, life-threatening illness and this eligibility ends once a child turns 18 years of age.
Inflexible funding
5.53Several carers told the committee about the difficulties they have experienced when funding was available in their participant's plan, but it could not be used for respite. One carer explained to the committee the frustration of not being able to top-up respite funding by accessing other funds in her child's NDIS plan:
When the funding is agency managed, we can't access and pay our bills through that particular SIL funding. So we asked for that. You rob Peter to pay Paul with a lot of his supports. He doesn't have everything he needs because there's no funding there.
5.54Another carer noted that NDIS plans used to be more flexible, allowing money to be moved around as needed. Her son had a generous NDIS plan but, more recently, when he was injured and needed therapy, the family could not access STA funds to cover the costs:
In the past they would just shift it. You would talk to a finance person and they would shift the money across to where you needed to spend it. Now they don't do that. You have to put in a review, and then you end up with more reports and less therapy hours, because our therapists don't want to be writing reports; they want to be working with our kids. There is just so much more red tape that is unnecessary.
5.55A submission from the National Assistive Technology Alliance explains that a lack of control over accessing quarantined funding in a plan is very frustrating for participants:
The biggest issue for people with hearing loss is the lack of flexibility between core and capacity building – they keep telling us what we need instead of letting us decide for ourselves. A key example (especially during COVID) is having heaps of money in capacity building, when we need live captioning or low cost technology, which is from core funding … Each time we have to go back and beg for more funding in capital – and in some cases it is refused by a planner even though they don't know what they are talking about.
Other uses for STA
5.56STA provision does more than give carers a break and a 'change of scene' for participants. It can be an important tool to transition participants to different accommodation or SIL. For example, Ms Debbie Wellington told the committee that she and her husband wanted to transition their son Jack to SIL when he finished school and before they grew too old to care for him:
We contacted the agency about a year and four months before he was due to leave school to talk about that and to talk about funding some transition visits, and also looking at starting some respite visits to start thinking about transitioning from home into supported living. Stuey and I aren't getting any younger, and Jack's care is pretty intense, and we know that we're not going to be able to keep it up forever.
5.57They were able to secure respite in which Jack was able to experience a day care program and STA, and his core funding for respite increased. However, securing this support involved his parents consulting the Legal Services Commission and obtaining a solicitor to aid with the AAT process for case conferences.
5.58When their daughter's mental and physical health deteriorated during COVID, Ms Kitty O'Sullivan and Mr Andrew Klose trialled placing their daughter in STA for eight weeks in late 2020. They stated that, 'her numerous behaviours of concern ceased immediately, and she began to lose weight and generally feel happier within herself', but at $42,000 per month, they had to bring her home as the NDIS plan did not support this cost. They then decided to pursue longer term Specialist Disability Accommodation (SDA) for their daughter, beginning what they described as 'our incredibly stressful and protracted NDIS SDA journey', which took 16 months to achieve an outcome.
5.59Spinal Cord Injuries Australia's submission detailed the challenging process many participants must undertake, when securing STA and other forms of NDIS-funded accommodation:
[T]he process heavy, evidence driven framework (evidence that in many instances does not appear to be considered) that informs SDA, SIL and other decisions often takes months before a result is achieved leaving participants languishing in unsuitable and unstable housing arrangements. In transitional housing where the short- and medium-term accommodation arrangements last between 30 and 90 days, a situation where decisions are taking months to make is untenable.