Supporting healthy ageing for people with intellectual disabilities in group homes: Staff experiences

ABSTRACT

Background

This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding.

Method

Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services.

Findings

Four themes emerged. The first captured the staff’s limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents’ healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS).

Conclusions

Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents’ healthy ageing.

KEYWORDS:

• Older adults
• services
• support needs
• healthy ageing

The life expectancy of people with intellectual disabilities has increased dramatically over several decades and, for many, is similar to that of the general community. This is attributed to medical advancements and improved health and social care services (Coppus, 2013; Strydom et al., 2020). Currently, people ageing with intellectual disabilities constitute a significant proportion of all disability service users. For instance, in Australia, 13% of people with intellectual disabilities receiving funding from the National Disability Insurance Scheme (NDIS) are aged 55 years and older (11,527 out of 87,212). Many reside in shared supported accommodation services, such as group homes that provide 24-hour support (National Disability Insurance Scheme, 2023). Increased longevity means that a growing number of group home residents experience age-related changes in their daily support needs that impact on the everyday work of group home staff and managers (Alftberg et al., 2021).

The ageing of people with intellectual disabilities has spurred debate among researchers, policymakers, and service providers. The debates consider how to identify the unique support needs of people with intellectual disabilities, and the policy aims, funding mechanisms, and services appropriate to facilitate this group’s healthy ageing (Hussain et al., 2021). Supporting healthy ageing involves providing opportunities and an enabling environment to promote the maintenance of wellbeing, independence, self-determination, and active engagement in life, despite changes in health and functional abilities (WHO, 2015). Furthermore, it emphasises the rights of older people to “age in place,” understood as remaining in their preferred environment with adequate funding and services to meet changing support needs (Araten-Bergman & Bigby, 2021).

The debate about enabling healthy ageing for people with disabilities is underpinned by public policy, services, and practice philosophies. Historically, the Australian government's response has been marked by ambiguity, with access to services based on age; aged care services are available for those aged 65 years and over, while disability services are restricted to those under 65 years. The policy intent stipulates “the disability and aged care systems should be flexible, streamlined, and aligned to ensure that … people with disability whose needs change as they age receive the services they need from the most appropriate system” (National Aged Care Alliance, 2016, p. 5). However, there were few strategies for achieving such alignment.

The division of responsibilities and boundaries between sectors often mean inconsistency and uncertainty about access to services and funding. People with intellectual disabilities, their families, and service providers, often fail to identify and respond adequately to the unique combination of age and disability support needs leading to premature and inappropriate admissions to residential aged care facilities or hospitals. Furthermore, this fragmentation in responsibilities and funding has obstructed cross-sectoral planning and collaboration among aged care, disability, and health services thereby often obstructing the realisation of a person-centred approach to support people with intellectual disabilities throughout the life course (Green et al., 2017; Hussain et al., 2021).

In the last decade, Australian aged care and disability sectors have undergone significant reform changing the policy and funding landscape towards individualised funding and person-centred approaches. In the disability sector, the NDIS aims to provide eligible people with individualised funding packages to purchase services according to their needs and self-defined goals. Although entry to the NDIS is restricted to people aged 65 or under, existing participants can choose to remain in the scheme past the age of 65 or, alternatively, to transfer into the aged care system. Importantly, those who choose to remain NDIS participants after the age of 65 can use NDIS funding to purchase services to meet their age-related support needs. However, once a person enters a residential aged care facility and receives aged care funding on a permanent basis, they are automatically transferred into the aged care system and are no longer eligible for NDIS funding (National Disability Insurance Scheme Act, 2013, p. 1 (29) (b)). Through these provisions and by assigning uncapped federal funding to the disability sector, the NDIS addressed some of the prior tensions between the aged care and disability sectors. In essence, the NDIS provides opportunities to address all needs of ageing NDIS participants within the disability sector in collaboration with mainstream health and community services, holding significant promise for enabling people ageing with intellectual disabilities to experience healthy ageing while continuing to reside in group homes. However, this interpretation of policy has yet to be fully tested.

Successful implementation of policies to promote healthy ageing among people with intellectual disabilities rests heavily on the ability of staff to identify age-related support needs and their confidence to provide appropriate support (Bigby, 2008). Despite this pivotal role, little is known about how staff in disability services understand and respond to issues of ageing. A decade-old systematic review of support needs for older people with intellectual disabilities revealed that disability staff often lacked the requisite knowledge and strategies to respond to the changing needs of ageing residents (Innes et al., 2012). More recently, two Swedish studies revealed that ageing issues were rarely addressed by staff within group homes; the culture of the homes meant that ageing was largely conceptualised as medical and functional decline (Johansson et al., 2017; Kåhlin et al., 2016). An Australian study conducted prior to the full implementation of the NDIS revealed 29 perceived challenges by support staff in supporting older people with intellectual disabilities. These included accessing services, time constraints due to conflicting demands, and inadequate funding for staffing, training, and ageing-related needs (Wark et al., 2015).

No studies have explored an understanding of how ageing is conceptualised and addressed by group home staff and provider organisations in the new policy context of a fully implemented NDIS. Our study aimed to explore these issues, with a particular focus on (a) the perceptions of direct support workers and their managers about ageing and the support needs of people ageing with intellectual disabilities living in group homes; and (b) the experiences of direct support workers and managers in responding to and adjusting services for this group in the context of the NDIS.

Method

Approach

A social constructionist theoretical perspective reflected our focus on staff perceptions and experiences. Within this perspective, we utilised a qualitative design using interviews to generate conceptual renderings from data (Charmaz, 2014). The study was approved by the La Trobe University Human Research Ethics Committee.

Recruitment and participants

The researchers purposely identified three large Australian disability organisations managing group home services who were supporting a cohort of people ageing with intellectual disabilities. They contacted the senior operational managers, provided information about the study and invited organisations to participate. All three organisations agreed to participate. Following management approval, the three organisations circulated information about the study via emails and newsletters, inviting interested staff to contact the researchers. The inclusion criteria were staff working in group homes (senior, frontline managers or direct support workers) with at least two years experiences of supporting residents aged 65 years or older. Sixty-five years was selected to match the age criteria used by the NDIS (National Disability Insurance Scheme Act, 2013, p. 1 (22)). Researchers obtained informed consent from interested staff who met these criteria before scheduling and conducting the interviews.

The three participating non-government disability organisations differed in size (including the total number of group homes managed, and the number of people supported) and location (in two different Australian states). A total of 21 staff from all 3 organisations participated in the study: 5 senior managers, 10 frontline managers and 6 direct support workers representing 11 group homes. All participants were female whose experience in the disability sector ranged from 5 to 20 years (M = 13.2; SD = 3.5).

Data collection

In-depth interviews with staff were conducted by the authors in 2019-2020. Separate but interrelated interview guides for managers and direct support workers sought to elicit participants’ perspectives on the support needs of ageing residents, the practices and adjustments made to provide support, and the facilitators and challenges of providing support. The managers’ interview guide included additional items about organisational-level processes contributing to or impeding the effectiveness of supporting people with intellectual disabilities ageing in group homes. These included issues such as funding, workforce skills, training, and cross-sector collaboration. Interviews were conducted face-to-face, lasted between 45 and 90 min, and were audio-recorded and transcribed.

Analysis

Data were analysed using an inductive interpretative approach, grounded theory coding methods, and a constant comparative approach (Charmaz, 2014). This involved an iterative process of comparing and contrasting open coding, starting with the initial coding of a transcript, and then grouping together descriptive codes to construct concepts and more conceptual categories and themes. During the analytical process the researchers regularly discussed and refined the emergent themes. In addition, throughout the research process the researchers engaged in reflective processes including “bracketing” and using self-reflective journalling to ensure the trustworthiness of data, and limit bias (Ortlipp, 2008).

Findings

Four major themes emerged from the analysis: The first, “Medicalisation and uncertainty about age-related changes” captured the staff’s limited understanding of ageing and the medicalisation of support needs. The second, “Ad hoc adaptations to age-related changes” identified staff practice and adjustments to service provision to facilitate residents’ healthy ageing. The third, “Staff commitments to ageing in place and ageing residents” described staff commitment to facilitating ageing residents to age in place. The fourth theme, “Navigating a complex service environment,” identified staff challenges and opportunities for supporting ageing residents in the context of the NDIS.

These themes are described in the following sections with supporting quotes from the transcripts. For each theme the sometimes-contrasting perspectives of direct support workers and managers are exemplified. To protect the anonymity of our study participants we included at the end of each quote only the position of the participant.

Medicalisation and uncertainty about age-related changes

Participants described ageing as multidimensional, encompassing physical, functional, social, and psychological domains. Staff had noticed a wide array of changes as the people they supported aged, including declining physical and cognitive abilities and psychosocial changes associated with life transitions such as retirement and reduced informal networks. Despite this, they focussed primarily on the biological and physical aspects of ageing and the impact of these on support needs. Hence, they associated ageing with the emergence of diseases and saw the changes they observed in people’s lives as originating solely from medical conditions. Their medicalisation of ageing extended to functional changes, as they also attributed cognitive decline, memory loss, confusion or alterations in personality and temper to symptoms of medical conditions, such as dementia and Alzheimer’s disease:

You see the changes as they become older if it’s dementia, I notice when it comes to remembering things … If it is fatigue or mobility I need to check for arthritis or osteoporosis … Any change we need to go to the doctor to check, it could be anything blood pressure, maybe they need glasses or hearing aid … . (Direct support worker)

Staff struggled with the uncertainty that surrounded the timing and nature of each individual’s age-related changes, finding it difficult to anticipate the impact of such changes on support needs. Despite their perception that old age is “normally” associated with gradual deterioration of capacity and health, staff experienced individuals’ functional decline and changes in daily routines as unanticipated and stressful:

We just were noticing small things like forgetting things that she wouldn’t normally forget. But it wasn’t every day, it was just coming and going … It is hard to know what’s going on, one day she can’t get out of bed without us next day she can take the bus and go shopping. (Frontline manager)

Ad hoc adaptations to age-related changes

Age-related changes were conceptualised by all staff as requiring adjustments to the type and intensity of support a person needed. Staff described how deteriorating health and changed daily routines had called for significant adjustments to their practice in terms of the tasks they were expected to perform and support hours required. Moreover, they identified residents’ needs for adaptive equipment (hearing aids or walkers) and changes to the physical layout of homes to ensure accessible and safe surroundings:

I have this lady, she is 82, we must start taking her more to the doctor because things are just not working right … blood pressure, cholesterol, constipation … you need to start watching her diet … falling down is now an issue so we have somebody around when she is taking a shower … We also had to put in bathroom grab rails and chairs. (Direct support worker)

Both direct support workers and managers perceived themselves as reactive to the changed needs of ageing people, making ad hoc adjustments on a case-by-case basis as needed. For example, one manager described how despite noticing a “natural” gradual health decline, adjusting the service response to meet an ageing person’s changing support needs was sudden and reactive, prompted by what was perceived as an unanticipated health-related crisis:

We are learning how to do this as we go … we were supporting this client one way and then, all of a sudden, she literally fell and knocked her head twice in two days, and then, surprisingly, her support needed to change. No one really knew what the correct process should be to ensure we were putting the right safeguards in place for her. We found it quite hard to know, what is the process we should be following here to ensure that we are keeping this woman safe … It wasn’t a really a straightforward process … we don’t have a really simple process or policy of what we needed to do … Who’s doing what … all these important things … we need to figure it out as we go. (Direct support worker)

Managers stressed the absence of formal policies or clear organisational guidelines for how to provide quality services for the ageing people they supported, describing instead a range of ad hoc strategies. These included: flexible rostering of support staff; providing staff with ad hoc training and support about ageing and intellectual disability; and forming new relationships with health and community services, such as palliative care and dementia services. For example:

As a service managing their health conditions it’s a challenge, you see it is not one size fits all … so in my houses it is just about listening to the support workers, they know the people they support best, and my job is to come up with solutions to issues as they arise … In one house we needed to get somebody to explain to the staff how to use feeding tube … in another house it is flexible rostering of time … we also started working with a nurse from the palliative care, she comes in twice a week to give him the injections, but we are doing the day-to-day stuff until the very last day. (Senior manager)

Staff described how as people aged the involvement of families, mainly parents, in their life faded away, thus reducing opportunities for social support and advocacy. They also saw that, for some people, retirement from work or a day centre further eroded the number of others involved in their life. As a result of such changes, staff saw older people as increasingly dependent on them to meet all their needs. They also felt the need to compensate to some extent for losses by providing additional support for decision making and social outings. They also adopted a greater role in advocating to ensure the person’s needs were met by their service or by external professionals and services:

As they get older the parents disappear, sometimes they die, sometimes they trust us or have their own problems I don’t know … So, we are all they have to take care of them, take them to doctors and activities, you know they have no one else. (Direct support worker)

Direct support staff described using their personal and professional knowledge and experiences of caregiving together with their amassed social capital about aged-related support and services:

I have built up a huge network in the community services, so that does make my life easier. Just to give you an instance, with the palliative care I have worked with for previous things, because of being here for 20 years I have experience and knowledge … even with my Mum, I supported Mum to die in a home a couple of years ago, so I know everybody, it’s like they all go “oh, you’re still there” so it helps, if someone here needs this … I know what to do, I know where to go … So, it is my personal systems and my professional systems … You know it is a network that I have gained over many years that has allowed me to support my guys. (Direct support worker)

Staff commitments to ageing in place and ageing residents

All staff conveyed a very strong commitment to the idea of “ageing in place,” though interpreting it differently. They felt that people should be enabled to remain living in their “long-term home” as they aged – some interpreted “home” as the same household, and others as the same organisation or the disability sector. The latter interpretations meant staff saw their role as supporting relocation to a more suitable facility within the same disability organisation. Regardless of their interpretation, participants saw the disability service system as the most appropriate for supporting residents throughout their life. Moving to any other sector was perceived as detrimental to the health and wellbeing of the person: aged care was not suitable for people with intellectual disabilities and hospitalisation was generally considered a last resort, suitable only when staff could not adequately provide required medical care. For example, one senior manager expressed how her strong commitment to the principle of “ageing in place” had shaped the response of her organisation and the opportunities it provided to ageing residents:

I tend not to move people to the nursing home, I’ve never done it and I’m actually kind of proud of that. I heard of other organisations that decided to move people based purely on finance. This is not going to happen while I am here … So up until a person’s needs become highly medical and cannot be managed by our staff with the support of other services, they will remain in their home, don’t get me wrong I mean they can go to the hospital and then it is back home. (Senior manager)

Direct support workers and frontline managers saw supporting people with intellectual disabilities across the life course as part of their role and congruent with the philosophy of their organisations. They felt that their managers set expectations about continuity of support and approved of their efforts to adapt their practice and their environment to enable this.

All participants appeared motivated to take responsibility for the people they supported. They articulated a desire to “be there” for ageing residents as their health deteriorated and they became frail. Furthermore, staff conveyed very strong personal commitments to the wellbeing of the ageing residents, believing they were best placed to provide support because of their long-standing relationships with the residents and their competencies in supporting people with intellectual disabilities:

I am just very passionate to support my guys to stay at home for as long as they can. I mean I’ve known them for years, we know them best, this is their home, everything, and everyone they know is here, it doesn’t make sense to send them away … Nobody can take better care of them, Nobody! … look we are not doctors, I know that but it’s really just a higher level of supports that they need, and this is what we do here, we can provide the best support. (Frontline manager)

Navigating a complex service environment

Despite concerns about the complexity of the new context created by the NDIS, many staff felt that its introduction had increased the level and types of support available to ageing residents and the accountability of services for delivering positive outcomes. Staff observed that individualised plans with attached funding and the opportunity for regular reviews provided them with the flexibility to adjust services as needs changed. Managers reported that the NDIS contributed to their confidence that they would be able to secure adequate funding for supports as long as it was incorporated into a person’s NDIS plan:

I would like to say that it’s more personalised services. I mean the fact that we were able to increase the staffing and support to our ageing clients and know that we’ve covered the cost of staff to do that, I think that’s one of the most important ones for us, knowing that we can react and support clients in the way that they’re needed by, basically, quoting for exact hours that we need. To have clients be supported by an OT [occupational therapist] every year for however long. I just think we’re providing a better service because of that. (Frontline manager)

Staff perceived that the introduction of the NDIS had allowed new opportunities for people to stay within the disability sector, avoiding premature hospitalisation or moving to large congregated residential aged care services. For example, one senior manager described how NDIS funding had allowed an ageing person, whose mobility support needs were increasing, to “age in place” by relocating to a more suitable disability-supported accommodation service within her organisation:

Well, there’s this woman … who is funded through NDIS, and she is probably at risk of losing her placement because she is sick and her needs are changing … the actual fabric of the building is not suitable to her needs anymore … So it was about how can we support her to not go to a nursing home … Luckily, there’s a house in the region that might be more suitable for her, so it's about can we transfer some of her NDIS supports to another house and keep her in our organisation with everyone she knows for many years … If she wasn't funded by NDIS that would be quite challenging to do that. But with NDIS funding we can be a little bit more flexible like that. (Senior manager)

Contrasting to these positive depictions of new opportunities to support ageing in place offered by the NDIS, staff described at length its shortcomings, the complexities it had created and their frustrations in having to navigate these. Achieving good outcomes, they thought, came at a considerable cost to organisations and staff, requiring advocacy, knowledge, skills and capacity to fill unfunded service gaps. They described uncertainty and confusion arising from the complex context. Managers found it difficult to get timely and clear guidance from the NDIS about people ageing in group homes, which often left them baffled. Complex NDIS processes were compounded with constant changes to many NDIS policies, regulations and guidelines, and the lack of detailed NDIS policies around ageing issues. For example, one manager described the service environment as being in a state of flux:

My understanding is that this [NDIS] is always changing, it’s a massive system to get your head around anyway. The guidelines and requirements for evidence plans and what have you are not clear, pricing is challenging … once you understand how this work and whom to talk to or how to apply for this or that, the guidelines change … . (Senior manager)

Some staff felt that the move from block to individualised funding hampered their flexibility and left some costs of providing quality support unfunded. Specifically, NDIS pricing failed to adequately take account of non-face-to-face costs:

Before [the NDIS] we had staff meetings … I could arrange for the nurse to come and explain how to work with a feeding tube … Or we could ask our OT to help with group activities … But now we can’t do that, every hour is accounted for, we need to provide evidence that every hour of support is with the person … . (Frontline manager)

Staff saw a timely and effective planning or review process as the key to obtaining sufficient funding to make the necessary adjustments to support the changed needs of older NDIS participants. However, many staff had experienced NDIS planning and plan review processes as disjointed and disconnected from their work, and a person’s actual support needs not being well represented in support plans. Staff thought the limited knowledge of NDIS planners or partners (local area coordinators) was responsible for this, suggesting the planners knew little about the unique combination of age-related, disability and health needs, group home services or mainstream services, or support outside of the disability service system.

Staff thought getting good NDIS planning outcomes were dependent on either the person themselves or someone on their behalf being knowledgeable about their needs and able to advocate for them. They were concerned, however, about the capability of ageing residents to advocate for their own needs and the availability of family members who can do so on their behalf:

It’s a bit like if you know the system and how you can get the supports required, initially they would go straight to family, we weren’t able to have any input into the plans when it first started, and really the family have no clue … they only go with their planners and there are so many clueless planners, NDIS don’t know the person … so nobody is there (in the planning meeting) to tell them what they actually need. We can provide evidence but when we get the plan, my goodness … sometimes it has nothing to do with what’s going on. (Frontline manager)

Staff reported filling advocacy gaps and being involved in articulating the support needs and managing NDIS plans of some residents. Staff who took on such roles might have known the person for many years or were support coordinators employed by the same organisation. All staff agreed that navigating the NDIS on behalf of ageing residents was necessary to enable them to provide the right support and was indicative of both staff and organisational commitments to healthy ageing.

I think that [the] NDIS package depends on people’s connections to community and family. I think if people are well-connected, then there’s more people who can support the argument that they need support, whereas if we’re working with people who don't have – particularly older people from institutional backgrounds who don't have anyone – it comes down to the service provider to act as an advocate on their behalf, to get the right supports in place and it takes a lot of time. (Senior manager)

This type of advocacy work took considerable time, which was unfunded. Adjusting support prior to securing NDIS funding also added to the costs borne by organisations:

We applied for NDIS change of circumstances, it took 6 weeks and we had to provide evidence, GP, OT, which also took some work … So overall it took about six weeks and because we were documenting everything, when we went to the plan review and showed the planner he said, “This is pretty accurate of what you need to be delivering, and we think it’s fair and reasonable,” and they approved it but it took time and as the service provider, we had to pick up the tab for two staff permanently with the person … As a service provider, it's not-for-profit. But we can’t permanently run at a loss. (Senior manager)

Discussion

The study's aims were twofold: (a) to explore staff's perceptions of ageing and the support needs of ageing residents, and (b) their experiences in responding to ageing residents’ needs within the new context of the NDIS. In relation to the first aim our findings revealed the staff’s narrow conceptualisations of these issues. While both direct care workers and managers noticed a multitude of changes as residents aged, they primarily identified and responded to health-related needs. Despite observing substantial changes in residents’ life circumstances, staff in our study did not perceive psychosocial needs as being substantially affected by age. In most cases, staff did not discuss age-related psychosocial needs. Moreover, when these needs were recognised, staff typically reported addressing them using general strategies from the field of intellectual disabilities, rather than employing gerontology-specific or mainstream strategies specifically designed to address age-related concerns such as grief and loss. This finding echoes the results of Kåhlin et al. (2016), who identified a similar trend among group home staff in Sweden.

This limited understanding of the ageing processes and the medicalisation of support needs changes poses risks of staff overlooking the broad spectrum of age-related support needs. An absence of appropriate strategies to meet these needs may lead to poor service quality, and jeopardises the safety, psychosocial functioning, and quality of life of residents (Covelli et al., 2016). Gerontological research asserts that ageing brings a unique set of challenges and life transitions that go beyond managing healthcare needs and that meeting those needs and facilitating healthy ageing requires specialised strategies, services, and environmental adaptation (WHO, 2015). Similar to the general population, ageing people with intellectual disabilities may experience distress associated with age-related decline, and bereavement due to the loss of significant others. They may also have fewer opportunities to maintain their autonomy, exercise self-determination, or engage in meaningful social activities (Schepens et al., 2019; Thalen et al., 2023).

Therefore, to support healthy ageing, staff need to enhance their knowledge about all aspects of the ageing process and its impacts and develop appropriate strategies to address changes in people’s lives and emotional states. Heller's Supports-Outcome Model of Ageing Well provides a framework to assist staff and managers to adopt comprehensive strategies for enabling healthy ageing (Heller, 2019). Heller’s model defines staff roles as providing support to (1) maintain health and function (physical and mental health and independence); (2) maintain active engagement with life (friendships, contributions to society, and community integration); and (3) maintain a sense of stability, predictability, and control (Heller, 2019).

Interestingly, despite lacking a clear understanding of ageing processes or the ability to meet emerging support needs, all staff in our study conveyed a very strong commitment to facilitating residents to “age in place” within the disability sector. This finding contrasts with previous studies that found staff had mixed views about the suitability of the disability sector to support ageing residents and some staff advocating for their relocation to aged care and hospital settings (Alftberg et al., 2021; Webber et al., 2010). Contemporary policies and research about ageing emphasise the contribution of “ageing in place” to healthy ageing. Our findings suggest that these notions are deeply embedded in the practice of disability staff and organisations. Indeed, staff in our study unanimously saw supporting residents across the life course as an inherent part of their role, resonating with personal and organisational values.

Congruent with other interpretations of NDIS policy intent, staff asserted that all age-related support needs could be successfully managed through person-centred support from the disability sector in collaboration with mainstream services such as health and community services. Nevertheless, while notions of ageing in place and remaining within the disability sector were undoubtedly entrenched in staff’s visions of their role, and in the NDIS policy intent, little progress had been made in converting these values into clear operational guidelines. Staff highlighted the absence of formal policies and explicit standards to direct their efforts in meeting the needs of ageing residents either within their organisations or the wider disability sector. This gap often resulted in reactive practices triggered by a health crisis.

Without clear standards and formal guidelines, staff were going beyond their role to find solutions as issues emerged and adopted ad hoc strategies. Such strategies relied heavily on the staffs’ personal and professional caregiving experiences and knowledge of available community and health services. While commendable, such efforts are frequently underfunded and dependant on personal commitments of staff and managers, and reallocation of organisational resources. There are dangers that such approaches lead to inconsistent and unpredictable service responses that hinder opportunities for healthy ageing of group home residents in several ways. Reliance on personal knowledge, experience and commitment is problematic as some staff may lack these attributes and inadvertently overlook certain support needs. Furthermore, they may lead to an overreliance on certain staff members that, in the event of staff turnover, threatens sustainability and consistency. The absence of organisational policies, practice standards or quality indicators for managing the support needs of ageing residents obstructs strategic planning efforts; ad hoc strategies without a comprehensive framework compromise effective utilisation of resources and miss opportunities to enhance the quality of support. More broadly, relying on individual organisations to reconfigure their resources (while waiting to secure adequate funding) is unsustainable due to organisations’ varying capacities to absorb increased costs (Bigby, 2008).

In relation to the study’s aim of understanding experiences of direct support staff and managers in responding to ageing residents’ needs in the new context of the NDIS, our findings paint a complex picture of both the opportunities and challenges faced by service providers. The staff in our study reported that in line with the objectives of the NDIS, the adoption of individualised funding has increased the level and diversity of support available to older residents, facilitating their ability for healthy ageing. However, this positive outcome is contingent upon the staff’s ability to successfully operate within the complex NDIS environment, lodge claims, and secure and use additional funding. It is concerning to observe the difficulties managers face in navigating the NDIS environment and addressing systemic issues inherent in its design and implementation. These challenges are not unique and have been previously identified across the broader disability sector (Carey et al., 2022). Nonetheless, our findings highlight the adverse implications of these issues for ageing residents, hindering their opportunities for healthy ageing.

The challenges of navigating the NDIS for ageing residents, highlighted by managers, were occurring as organisations were also adjusting their practices and operational systems to the new NDIS system. This environment was unstable and continuously changing; rather than a swift implementation, NDIS rules and policies were constantly shifting to address emerging or unexpected challenges faced by both participants and service providers (Green et al., 2017). Our findings suggest that the constant state of flux in the operating environment, albeit intending to benefit participants, inadvertently created confusion and uncertainty for providers. Staff reported challenges in obtaining clear guidance and advice, and experienced frustration with the complexities and time-consuming nature of obtaining funding. This aligns with a broader trend observed in the disability sector in Australia, where frequent changes in rules and regulations have led to increased administrative burden and lack of clarity among service providers (Carey et al., 2022).

These challenges of navigating the complex and changing NDIS environment were exacerbated when addressing the evolving needs of ageing residents. While the NDIS theoretically allows the use of NDIS funds to purchase support for age-related changes, managers reported a more complex reality. They struggled to obtain clear guidance and consistent advice regarding the interface between disability, aged care and health sectors and faced difficulties in understanding the availability of resources and how to source and manage supports provided by other sectors. The absence of guidelines and inconsistent interpretation of eligibility criteria by National Disability Insurance Agency (NDIA) staff contributed to these challenges. Such difficulties are not surprising or unique to issues of ageing people with intellectual disabilities, as the NDIA has consistently been critiqued for poor communication with service providers, and for failing to provide clear guidelines on the impact of policy changes on services providers and practice (Carey et al., 2022; Tune, 2019). It seems that the new opportunities inherent in the NDIS for assigning disability sector funds and responsibilities to support healthy ageing are hampered by frequent changes in regulations and the absence of clear information. Our findings underscore the urgent need for the NDIS to enhance transparency, communication, and accessible guidelines. Such measures will greatly assist staff and organisations to effectively navigate the ever-evolving NDIS landscape, ultimately improving outcomes for ageing residents.

Another area of concern highlighted by staff in our study is the suitability of the NDIS planning process to take good account of ageing residents’ needs. This aligns with growing evidence identifying the mismatch between the underlying expectations of the NDIS and the abilities of people with intellectual disabilities (Dowse & Wiese, 2016). The NDIS process relies on participants’ abilities to clearly articulate their needs and engage with services once funding is agreed upon, either directly or through advocates (Bigby, 2020). Our findings demonstrate that this is not the reality for many ageing residents. Staff in our study were not confident that residents could identify or articulate their own needs or had adequate support with planning and plan management processes. Staff felt that when families supported a person with planning, they often lacked sufficient understanding of their need to advocate adequately. Such concerns were similar to those in an early evaluation of the NDIS, which identified the planning process as superficial and that NDIS planners lacked knowledge to assist people and their carers to explore age-related needs (Mavromaras et al., 2019). For those without families, staff identified unmet needs where ageing residents were without advocates to assist them in articulating their goals. In these cases, staff responded by involving support coordinators from their organisation or even providing informal support themselves. However, as others have indicated, this entails considerable unfunded work and raises concerns about a potential conflict of interest (Mavromaras et al., 2019; Tune, 2019). Furthermore, even after support plans were approved, many ageing residents needed ongoing assistance in finding, accessing and coordinating their disability and age-related supports. Here again, families and support coordinators often fell short of providing the right opportunities and support staff often reported stepping in to fill these gaps with little input or funding.

The absence of independent advice and support seems to hinder the potential of the NDIS to meet the needs of ageing group home residents effectively. To bridge this implementation gap, the introduction of independent, government-funded advocacy or brokerage services might prove useful. These services can assist ageing residents to articulate their goals effectively and assemble the requisite support to meet their disability and age-related needs. Thus, our findings reiterate – as observed by others – an imperative need to embed funding for skilled coordination as an integral part of support plans (Dowse & Wiese, 2016; Fleming et al., 2019; McKenzie & Smith-Merry, 2023).

Our findings also exemplify how the cessation of block funding and NDIS pricing impact staffs’ ability to support ageing residents within the disability sector. The hourly basis of NDIS pricing fails to take adequate account of the non-face-to-face costs associated with quality services such as administrative, service planning, professional development, advocacy, and building partnerships with other services and sectors (Tune, 2019).

Research and best practice call for an integrative approach that necessitates the collaboration between disability, health and aged care services (Bigby, 2008; Heller, 2019; Hussain et al., 2021; WHO, 2015). While our findings demonstrate some limited cross-sector collaboration and networking among disability services, healthcare, and palliative care, these initiatives were ad hoc, and relied on trust-based relationships initiated by individual staff members. A more sustainable approach needs the Australian government to devise a solution to fund the development of strategic, long-lasting partnerships between the disability, aged care, and health sectors. This may enable better transfer of knowledge, workforce development, and adequate practice to support healthy ageing for people with intellectual disabilities.

Limitations

Our findings should be interpreted with the following limitations in mind. The analysis focused on the perspectives of group home staff. The exclusion of other views, such as those of family, other service providers, and ageing people themselves limits the comprehensiveness of our findings. Future research could yield a fuller understanding by incorporating these different perspectives.

Additionally, the sampling method meant data were limited to the staff’s perception of the support needs of ageing group home residents. Thus, the support needs of those who live in other contexts or do not receive services funded by the NDIS are not represented. Similarly, due to the qualitative nature of our study and the selective nature of our recruitment approach, our findings are predominantly based on the experiences and insights of a small and self-selected group of staff, thus may not accurately reflect the views of all staff in group homes or providers in other services. Further research involving larger, more diverse participant groups is necessary to deepen and extend these findings.

Finally, interviews were conducted shortly after the full rollout of the NDIS. Significant policy shifts during this period could have affected the staff`s perceptions. Future studies should consider this evolving context and explore the longer-term impacts of the NDIS on staff perceptions and practices.

Conclusion and implications

This research has several implications for policy and service delivery. The limited understanding of staff about the support needs of ageing residents suggests that if policy aims to enable people to experience healthy ageing – and the disability sector is responsible for this – then careful consideration is required to develop staff knowledge, skills and competence in identifying and fully addressing the whole spectrum of age-related support needs of people ageing with intellectual disabilities. There is also an urgent need to adapt systemic structures to better support the ageing population in group homes. The NDIS and disability support organisations must more clearly articulate what “healthy ageing” in group homes entails and develop clear guidelines on how to best support ageing residents’ changing needs and to maximise their choice and control over their support.

Additionally, the Australian government should translate legislative intentions surrounding the intersection of disability, health and aged care systems into clear guidelines for people with intellectual disabilities, their families, planners, advocates, and service providers. In this context, ensuring people with intellectual disabilities have access to independent advice, accurate information, and support for decision-making is paramount. Similarly, it is crucial to provide an accessible NDIS pathway for people ageing with intellectual disabilities. This would involve providing them with access to independent support for identifying their goals and support coordination for assisting them to make decisions about services and effectively manage their support plan.

Finally, critical consideration is required for the development and adjustment of the NDIS planning process and pricing. It is vital to ensure that sufficient funding is available for providers of group homes to adequately support the evolving needs of residents as they age. This should include considering how funding allocations can support training for staff and build intra- and cross-sectional partnerships to allow knowledge transfer to ensure effective responses to the unique needs of ageing people with intellectual disabilities.

Disclosure statement

No potential conflict of interest was reported by the author(s).