Since the 1970s, the disability movement, led by people with disabilities, has played a key role in changing disability policy and service systems. People with intellectual disabilities have contributed to these changes but have not maintained a high profile. Too often they are not well supported to participate or are represented by families and other allies. The same is true of research and developments in disability practice and safeguarding, where perspectives of people with intellectual disabilities are underrepresented.

The new rights based policy approaches discussed in this book emphasise hearing directly from people with lived experience of disability about their experiences as service users to inform what policies need to change and how services should be designed. More funding is becoming available to scaffold support for people to speak for themselves and knowledge is growing about effective ways of doing this. These new directions are not intended to devalue the role of families and allies in representing their perspectives about what is important to people with intellectual disabilities. Rather these trends aim to distinguish, more clearly than in the past, the views of people themselves from those committed to their wellbeing.

Leadership and presence of people with intellectual disabilities in Disabled Person’s Organisations and public campaigns is increasing, and raising their profile as one of the largest group of adults who use disability services. For example, in June 2022 the leadership and contribution of three people with intellectual disabilities were recognised through award of Orders of Australia—Michael Sullivan, Ian Cummins and Fiona McKenzie. Michael’s comments at the time capture past problems and challenge all of us to think about our role in bringing about change.

Every person with an intellectual disability is an individual with a name and a life. We are not just a collection of behaviours or a syndrome full of symptoms. But people with intellectual disabilities are very often treated as if we are nobodies. As if we are invisible … I want you to ask yourself, ‘What could I do, to reach out? What can I do, fix or change, to help someone get the good life they deserve. (https://cid.org.au/our-stories/congratulations-are-in-order/)

This chapter takes up Michael’s challenge of making people with intellectual disabilities more visible. It highlights what might be learned by support workers and organisations from listening to what people with intellectual disabilities say about services and suggests some of the actions workers and providers might take to improve or fix some parts of what they do. The chapter includes perspectives of family members as well as of people with intellectual disabilities. This draws attention to the importance of families in the lives of some service users and families’ roles as advocates monitoring and collaborating with services to assist people to have the best possible quality of life. Inclusion of family recognises that some people with severe or profound intellectual disabilities are not able to reflect on their own experiences even with the best of support. They will remain invisible unless someone else, like a family member who knows them well and interprets their experiences, advocates for them (Jackson, 2023).

The chapter concentrates on people with intellectual disabilities who use group homes or other forms of supported accommodation services. Only 4 of the 64 studies about group homes published since 2015 include the perspectives of the people who live in them (Bigby, 2023). This is not always due to disinterest on the part of researchers as much group home research has used observational methods to ensure inclusion of people with severe and profound intellectual disabilities (Mansell, 2011).

Insights from Individuals with Intellectual Disabilities: What the Literature Says

People in group homes whose views were captured in these studies all talked about the importance of the way support workers talked to them. People didn’t want to be told what to do or be told off, they wanted to be in control of their own everyday lives and decide what to do for themselves. For example, one of the participants in a UK study said,

It’s like if I say like one thing and they say the other. I just feel like they’re telling me, it’s hard to explain, it’s like if I wanna eat something that’s not good and things that aren’t proper meals, I feel it isn’t really down to them to tell me this. They don’t have no right do they, controlling over my life and that I don’t really need, I really don’t’. (Evans & Gore, 2016, p. 8)

The people in this study did value the support and advice support workers could give but what they thought was most important, was how workers interacted with them in giving advice. One person talked about a staff member they liked as, “good at giving advice, what to do what not to do, advice not telling” (Evans & Gore, 2016, p. 8).

The desire to be in control is echoed among people who have moved from group homes to more independent living. In one study people reflected on their appreciation of having greater choice and control since they had moved.

You can do what you want, please yourself what you do, be home when you want, you don’t have to answer to anyone, you please yourself where you want to go, if you want to go to Melbourne for the day you don’t have to ask anyone, if you want to bring someone else, you don’t have to ask. (Bigby et al., 2017, p. 312)

People also thought that being known by support workers was important. As this participant in a Dutch study explained about one of his support workers:

She has been my key support worker right from the start. So, yeah, that is quite a difference. And through that you build something together. You don't have to agree on everything, but you build something together. … You get to know each other; you get to know each other better. She comes to understand me better. That I am emotional at the moment, or glad or happy. She can tell from my face when something is going on. (Giesbers et al., 2018, p. 313)

Having regular support workers and knowing which support worker is coming was important both for people in group homes and for those living in other forms of supported accommodation. As one person said about their team of support workers,

They help us with the menus, cleaning, cooking, shopping, any appointments and we just lost a really good support worker … there’s a bit up and down at the moment, we don’t know who is coming and who is not … so it’s been really unsettling. … Really they need to ring the day before [tell us] who is going to be on and who’s not working. … I think this organisation is not really good enough because we need to know, my housemate and I need to know who is coming. (Bigby et al., 2017, p. 313)

The turnover of support workers means not all workers can know a person well. Careful or deep listening by workers is one way at least of compensating for this. Support workers need to listen as several people getting drop in support said,

I see, a lot of support workers they’ve got to listen to you. If they don’t listen to you, they’re not doing their job properly … Yeah, he does [listen] … I rang him this morning about something. He listened to me on the phone, he rang me back. (Max)

They [support workers] don’t care. … I know that I tell them I want that, they walk away. (Sam) (Ashely et al., 2019, p. 704)

These studies were conducted in the UK, the Netherlands and Australia before the NDIS reforms. They give some indication of what people with intellectual disabilities think is important behaviour for support workers—talking respectfully and listening to them. This might be summarised as being attentive and responsive rather than controlling and dismissive.

The rest of this chapter draws on more recent unpublished data from interviews with people with intellectual disabilities and their families about group home services. These interviews were conducted during 2022 as part of an ongoing longitudinal study of the quality of support in group homes (Bigby et al., 2020). All the names are pseudonyms. These sections take a more in-depth approach and different style from the literature discussed earlier in this chapter. They reflect similar themes to those in the literature and add new ones.

Insights from Recent Interviews with People with Intellectual Disabilities in Group Homes

Support workers carry out a blend of support and caring tasks—skilled support that enables people to be engaged in activities and social relationships—care that meets people’s basic needs, such as getting up, showering, dressing, eating and moving from one place to another. What mattered to the people in group homes whom we interviewed was the way staff interacted with them in carrying out these tasks—whether support workers were respectful, and whether they knew about their social connections with family beyond the group home.

Kenneth is a middle-aged man who lives in a group home. He was born with an intellectual disability and has a mobility impairment that causes him pain and requires the support of a walker. Kenneth functions independently in many areas of life with minimal prompting or support from direct staff, but he has difficulty washing and cleaning himself. During a face-to-face interview with Kenneth at his group him, he said, “I need a lot of help in the shower, like with washing myself, personal stuff”, he said. Kenneth appeared embarrassed and awkward when he described how difficult it is to wipe his own backside. He is often embarrassed, and even mortified, when new or temporary staff are tasked with helping him in matters of personal care and hygiene, specifically showering and toileting. “I get really”, he stammered, trying to find the right words, “when unfamiliar people come in from the agency that don’t know me”. He lowered his head thoughtfully and continued, “because I don’t know them. I’m not trying to be nasty. People at the agency come in and they don’t sit down and talk to me. They just start doing their bloody work. Get to know people first before you do the job.”

Kenneth’s experiences demonstrate the importance of support workers focusing on their relationship with the person they support, rather than always on more concrete tasks. For Kenneth, being treated as an individual and upholding his dignity is central to the support process. Kenneth’s concerns underscore the importance of support workers, including those who may be there on a temporary basis, being equipped with the necessary knowledge and skills to provide intimate support in a dignified and respectful manner. This means training on what respect looks like, communicating sensitive and personal issues, identifying and responding to signs of distress and understanding that everyone has preferences that must be respected.

The people with intellectual disabilities we interviewed often gave special attention to family relationships. For Glen, a middle-aged man living in a group home in a country town, his extended family play an essential role in supporting his connections to the world outside his home. Glen takes pride in his family, many of whom live nearby, and he often participates in social events like barbeques and birthday celebrations, which give his life meaning.

Erin is a woman in her late twenties living in a group home in a seaside town. Prior to this, she lived with her mother, as her father died many years ago, and her older brother currently lives interstate. According to Erin, her move to the group home was “a big change in her 29-year-old life”, and she has found the adjustment particularly difficult. Even after some time, she still experiences a mix of “nervousness” and “excitement” about the transition. Despite this, her mother has always been and continues to be her closest supporter and confidant. As Erin said, “She’s always looking out for me”. Since moving out of her mother’s home, Erin admitted things “get a bit lonely”. More recently, Erin’s mother has been experiencing health issues, and despite Erin’s best efforts to visit her, the COVID-19 pandemic has made it challenging. “All this lockdown, it’s been stressing each other out”, Erin revealed.

Erin shared details about her social life both inside and outside her group home, expressing her enjoyment of working at the Red Cross and her mixed experiences with the other residents, saying “I have good days and sour days with them”. However, she spoke with evident excitement when recalling how she attended her brother’s wedding earlier in the year and her passion for music, inspired by her musically gifted older brother. Erin’s close relationship with her mother plays a critical role in maintaining her emotional wellbeing and providing her with opportunities for social engagement beyond the confines of her daily routine. Further, her family members provide important connections to her past, which gives her a sense of continuity despite the major changes she has experienced since moving into her group home.

For Glen and Erin, living close to family is of utmost importance and enriches their overall quality of life. The significance of family to their emotional wellbeing and in supporting connections to the world outside their home suggests support workers need to know about a person’s family, and actively support the role they play in a person’s life. Effective person-centred support may involve support workers engaging both an individual and their family to better understand a person’s perspectives, needs and goals. In turn, through working collaboratively with support workers, families can help identify the types of activities and social opportunities that are important to individuals and help staff find ways to incorporate these into their daily routines.

Perspectives of Families of People with More Severe and Profound Intellectual Disabilities

Families can be important advocates who safeguard the wellbeing of their relatives by identifying and bringing to the attention of managers neglectful or unprofessional behaviours that impede quality of life or put a person at risk of harm. But as this section illustrates many of the issues they identify are the direct impact of system-wide issues on their relative, such as staff turnover and shortages or adequacy of funding for training.

Jenny and Melissa are identical twins born in Scotland in 1964. Complications surrounding Melissa’s birth—an episode of hypoxia (low oxygen)—led to intellectual disability and developmental delays. Jenny remembers living with her sister in the family home during the early years. But then things changed. When they were around five years old, their parents, feeling increasingly overburdened by dealing with Melissa’s angry outbursts, decided to transfer her to a specialist hospital for those with intellectual disabilities. Jenny expressed that, in retrospect, she thinks it was a desire for normalcy within the family that prompted her parents’ decision. Back in the 1960s, the impulse to institutionalise one’s child often reflected a mixture of societal pressure, parental preference and the advice of medical professionals. Jenny reminds me that it was a “whole different ball game back then”. To this day, she vividly recalls Melissa at the hospital behind locked doors and the padded rooms that were routinely used to involuntarily seclude patients and force compliance. These days, Melissa is almost 60 and lives in a group home in Victoria, and “life is easier” for her, according to Jenny.

While Jenny derives some peace from the knowledge that things are easier for Melissa now, especially when compared to the harmful effects of institutional life, she continues to worry about Melissa’s quality of life in terms of social connections (both within and outside the home), staff interaction and the overall support provided. Jenny asked rhetorically, “[D]oes Melissa suffer, and you don’t know about it?”. “That’s always on the back of your mind”, she said.

One afternoon, at the height of the COVID-19 pandemic, Jenny received a call from a support worker at Melissa’s group home to inform her that her sister had been rushed to hospital in an ambulance after having a seizure. Jenny arrived at the hospital shortly thereafter to find Melissa in the isolation ward for COVID patients. Melissa was under-dressed in soiled pyjamas, according to Jenny, her hair in a multitude of knots, “in a state of neglect”, as she put it. She’d vomited and nobody had bothered to change her. A nurse commented, “My God, her hair hasn’t been brushed for days”, Jenny recalls. The remark stung, especially since Jenny, and her parents before her, has always taken pride in making sure Melissa’s hair is done nicely and that she is dressed well. For Jenny, a respectable appearance projects a message of dignity.

When Jenny inquired about what had happened leading up to her sister’s hospitalisation, the support workers from Melissa’s group home were not forthcoming with the details. In fact, Jenny found unsettling discrepancies between what the support workers said and what she uncovered through her own investigation. For example, according to Jenny, the ambulance had not been called until an hour after the time she’d been given. Furthermore, no one was able to tell her what had happened between the time Melissa received her morning medication and when the ambulance was called a couple of hours later. “We don’t know the truth of what happened that morning”, Jenny said. “And I don’t think they [service provider representatives] are prepared to actually be an open book with us”. Without all the details, Jenny was left to piece together the story herself. She believes the direct support worker on shift that morning suspected Melissa of having COVID and therefore quarantined her in her bedroom, neglecting to take proper care of her from fear of infection. Jenny explained, “We think they have given Melissa her tablets, not made her sit up to take them, but given them to her while she’s still in bed, and she’s probably choked on them and vomited, and then had a seizure”. Then, after a long pause, she said, “[W]e don’t know”.

Jenny’s experience with her sister’s hospitalisation highlights the complex challenges that service providers and support workers face in their work. It highlights the need for transparency in communications with individuals and families. If errors were made, Jenny wanted these to be acknowledged and disclosed—a principle known as “open disclosure” (Iedema et al., 2008). The story of Melissa and Jenny highlights the essential role of family connections in advocating for individuals who cannot speak up for themselves and the necessity for ties to people outside the service system for safeguarding the rights and wellbeing of people with disabilities.

“You worry all the time”: The Impact of Staff Turnover and Leadership

Like Jenny in the previous section, one father, Gerald, echoed similar concerns about a lack of transparency and communication in relation to the support of his 38-year-old daughter, Julie, who also lives in a group home in Victoria. “There’s always things you worry and ponder about”, he said. “Does she get a good level of care or is it that when you turn away the carers [staff] don’t do what they appear to be doing when you’re there. You worry all the time.” Since her mother’s health began to wane, Gerald has become Julie’s primary advocate and confidant. He admits that Julie sometimes calls him to tell him she does not feel safe when there are new or temporary support staff around. Because of this, he frequently spends weekend evenings at Julie’s group home to provide her comfort and “monitor things”, as he puts it. Sadly, what he sees there gives him little respite from his worries. He is often struck by the high levels of disengagement among staff. People “wasting time”, he said, watching TV or playing on their phones, rather than being attentive and responsive to the people around them. He expressed caution about asserting himself to the staff from fear they might find him “too demanding” and of there “being a backlash” against his daughter.

Gerald’s depiction of Julie’s discomfort around new or temporary direct support staff strikes a chord with other individuals residing in group homes, such as Kenneth, whose account we previously heard with relation to dignified support. Gerald’s concerns about Julie’s support reflect a range of quality of life domains. He worries about her physical safety and emotional wellbeing when she is with unfamiliar staff members. Additionally, he feels guilty about the limited opportunities for Julie to participate in social activities and form meaningful relationships. Although Julie enjoys socialising, she cannot entertain herself and often spends lengthy periods alone with few activities or opportunities for her to receive the warmth, affection and closeness related to the quality of interpersonal relationships. As Gerald explained, rarely do they [staff] engage her more fully in extended conversation because “that’s what she likes, that’s her strength”.

Gerald believes that if staff members took the time to engage Julie in conversation, it would enhance her sense of wellbeing. Unfortunately, he says they rarely take the time to talk with her at length, which leads Julie to call him multiple times per evening for someone to talk to. However, when she has a one-on-one support worker he doesn’t hear from her as often. “Then it’s okay”, he said, “she’s good”. During these times he feels reassured that she is receiving the attention and engagement she needs.

Gerald feels a strong sense of disempowerment over the lack of consistent strong leadership at Julie’s group home. According to him, the home hasn’t “had a regular manager for five to eight years”, and there’s always someone temporary who stays for a few months before leaving. “If there was stability in that regard”, he explained, “as a parent, you would go away feeling far more confident”. Strong leadership is crucial because it influences how support is enacted, and for many families, this is of utmost importance. As one mother said, referring to the care of her middle-aged son, “When he has had a long-term team leader, and they get to know him, they do start caring a little bit and they investigate more options for him. They involve themselves more in the activities he likes.” Similarly, Jenny attributed the lack of transparency and accountability she has experienced to a lack of strong and consistent leadership and high staff turnover at Melissa’s group home. “They need one person in there who knows what’s happening”, she said. In the past, when there was staff stability, the communication was better, giving her “more faith” in the support being provided to Melissa.

Gerald likened the lack of strong leadership to a boat without a captain. “It’s a bit like a boat in the middle of the ocean”, he said. “If you’ve got a captain in charge, you may get to port. If you don’t, the chance of getting to port are pretty slim.” He continued, “I think the whole house can feel it as well, in the sense of there’s no spontaneity, no natural happiness”. In Julie’s case, he hopes that with strong management in the future things will turn around at her group home. Currently, there is a young woman temporarily managing things that sets him at ease. He described her as “very understanding of Julie” and as someone who is “not scared to initiate contact” with him. “She keeps the place running pretty well”, he said, adding that when he is there he can see “she knows what is going on, she knows what to do, and she directs the other staff accordingly”. “A good manager solves eighty percent of the problems”, Gerald explained, because they “monitor the situation carefully in terms of what the staff do, they make sure they [direct support staff] get proper training, and make sure they know each individual client and what their needs and requirements are”. Gerald’s awareness of the gold standards for frontline managers that enable best practice and lead to quality outcomes for people in group homes is consistent with evidence-based best practice frameworks (Bigby, 2023).

Given that the disability sector reports high rates of staff turnover and that providers are reporting increasing difficulty attracting team leaders and house managers, there are no simple solutions to the frustration experienced by Gerald and many parents. Support workers and providers can demonstrate empathy for the frustration and disappointment experienced by people supported and their families about the high rates of turnover. Providers should do what they can to improve the attraction and retention of staff. Providers might focus on more than the team leader or manager, and think about how selected team members—or even all team members—could learn about the person supported. Providers should design their systems to enable new managers and workers to quickly understand the wants and needs of each person supported and to minimise the need for the people supported or families to have to repeat themselves time and time again, which can be both frustrating and demoralising. For example, short videos can be recorded conveying the key information about the person and how best to support them.

Rosemarie, a divorced mother of four children in her sixties is continually frustrated about the quality of support her middle-aged son, Tom, receives in his group home. She feels perpetually exhausted from continually monitoring the support he receives and responding to incidents that result from staff practices. “I am constantly involved”, she said. “Constantly.” Recently, Tom got into a fist fight with another resident from his group home on the bus as they were coming home from their day programmes. “Andrew, who lives with Tom, makes noises”, Rosemarie explained, “and it gets on Tom’s nerves”. Tom turned around and “whopped him one” and “told him to shut up”. In retaliation Andrew slapped Tom across the face, and then “it was on for young and old”, Rosemarie explained. For Rosemarie, the most concerning thing about the incident was that it could have been avoided. She explained that the staff and residents are aware of the tension that exists between Tom and Andrew, so “why was Tom sitting in front of Andrew on the bus?” “Stuff-ups happen all the time”, she said, giving in to her frustration, before adding offhandedly that “it’s not great when they ring you up and tell you they’ve lost him”.

Rosemarie wrote a letter of complaint to the current team manager of Tom’s group home about the staff’s practices and management of the situation on the bus and the dismal implementation of her son’s behaviour support plan, but it was clear that she lacked any hope of reaching a satisfying resolution. Rosemarie’s frustration over staff competence and frequent episodes of “negligence” has reached an intolerable point for her, which is further exacerbated by staff turnover and her consequent inability to form a strong working relationship with a long-term team leader who might meet the profound need for staff training and development. “If they would stay in their role for any period of time, then I would have some sort of relationship”, she said.

Support staff and managers interacting with Rosemarie and other family members like her should recognise that their frustration often results from years of disappointments. Confronting years of pent-up frustration can make staff feel anxious or defensive. One way of reducing the impact in Rosemarie’s case would be support workers and managers focussing on the present and demonstrating that good support to Tom is possible through evidence informed practice such as Active Support. Further, a service manager might acknowledge to her the reasons behind people such as Tom and Andrew, who though incompatible, might have had to live together. When in the past for example, places in group homes were scarce and avoiding homelessness in a crisis rather than compatibility was the driving force for filling vacancies. A manager might also initiate discussion about the greater opportunities that individualised funding brings in terms of exploring alternatives to good groups or reconfiguring existing support arrangements.

Through listening to individuals and families, support staff may also identify “bigger” issues of concern such in the case of Erin and Rosemarie compatibility with the people they live with or indeed where a person lives. In fact, several people who were interviewed expressed a desire to live somewhere closer to shops where they could walk and get coffee, and for those already near shops and places to go out, it was a factor in their satisfaction with their living situation. Although often beyond the influence of a support worker, insights into concerns such as these should not be dismissed as too hard to fix but be passed on managers or support coordinators who can support people to act on them.

Communication Between Families, Staff and the People They Support

Social engagement is a crucial aspect of life for individuals with disabilities living in group homes. However, families often express concerns about their relative’s limited social networks and believe that support workers can play a role in providing social opportunities. As one mother, speaking about her son’s support, put it, “I would like him to achieve as much socialisation as possible in the community, to be able to perhaps even find some volunteering job that he would like to do, say, at Bunnings or Safeway or something like that. But he needs to be supported in that.”

Families hope that staff can prioritise getting to know their family members as unique individuals with distinct personalities, interests, feelings and idiosyncrasies. This they surmise will lead to effective support for engagement in social activities that broaden and strengthen social networks.

The importance of personalised attention and support can be seen in the case of Jenny and her twin sister, Melissa, where staff turnover and absenteeism have made it challenging for staff to provide the consistency in support that lends itself to rapport building and responsiveness, as Jenny explained. “Lately, they’ve had a lot of changes in the staff”, she shared with me. Although some staff members developed strong relationships with Melissa in the past, they had since moved on. “This is the problem that you have”, Jenny said. “People have lives outside. It’s just their job.”

Because Melissa is non-verbal, Jenny has taken it upon herself to educate support staff and team leaders about her sister’s likes and dislikes regarding food, music, games and more, and has even created visual slideshows containing essential information about Melissa to enhance staff learning. As Jenny said, “It takes time to get to know somebody, and every individual person with a disability is different”.

She elaborated on Melissa’s particular sensitivity to certain sounds and her fondness for certain pet names. “When we argue or if somebody is noisy”, Jenny explained, “Melissa thinks that’s quite funny. She gets stimulated from that.” She continued by saying, “We call her a nick name that she thinks it’s hilarious. So, we’ve told her support workers to call her that.” Jenny is aware that temporary staff covering a shift may not have the luxury of reviewing copious amounts of paperwork. Thus, she hopes the slideshow will offer a more user-friendly, time-efficient and concise alternative to enhance the quality of Melissa’s support. While acknowledging the challenges faced by support staff, it’s important to ensure that residents receive individualised support that meets their specific needs.

One way to overcome these challenges to delivering person-centred support is through improved communication between people supported, families and group home staff. By sharing important information about their loved one’s likes, dislikes and preferences, families can help staff provide personalised support that promotes social engagement and meaningful activities. Families can also complement the role of staff by building relationships and providing ideas for meaningful activities. Effective collaboration between families and group home staff is essential to achieve better support and quality of life outcomes for individuals with disabilities. However, even with the best intentions and efforts towards personalised support, communication breakdown between families and service providers can hinder the progress and positive outcomes for individuals with disabilities.

This can be seen in the case of Kerry, who has taken on a larger role in managing the support of her younger sister, Catherine, who lives in a group home in Victoria. With both sisters in their fifties, Kerry has slowly taken the lead in managing Catherine’s support as their parents have stepped back. Kerry’s experience highlights the need for good communication, including good listening, by workers. Despite her efforts to communicate her sister’s preferences and needs, Kerry states that her contributions are often overlooked or disregarded by staff, and this undermines an effective working relationship between them.

For example, Kerry shared that as a source of comfort and joy for her sister, she often buys DVDs of the TV comedy The Golden Girls, which has always been one of Catherine’s favourite shows. Recently, after a conversation with support staff, Kerry decided to purchase a smart TV for Catherine’s bedroom, with the intention of not only allowing her to stream her beloved show, but also providing her with the added possibility of accessing new content.

“We thought it was a great idea for her birthday”, Kerry said. “So mum, dad, and I went halves in it, but also too in the hope that she might watch something else if she had the opportunity to look through [new content].” However, despite Kerry’s clear intention, a new team leader soon reached out to request more DVDs for Catherine, as her previous one’s had gone missing.

In Kerry’s case, the purchase of the smart TV was intended to broaden Catherine’s viewing options and expose her to new content. For Kerry, the team leader’s response not only indicated a breakdown in communication but also a misalignment in their goals and values for creating new opportunities for Catherine.

While the frustration of the family is understandable, even small changes need to be carefully communicated and managed by both staff and family. In Catherine’s case, it may have been necessary for;

  • The family to convey their intentions to Catherine, explaining the perceived advantage of being able to watch new content.

  • The family to discuss their goal with the team leader, who can convey this to the team.

  • The team leader to check with Catherine and members of the support worker team whether they know how to operate a smart TV. If not, training would be needed.

  • To arrange some training for Catherine about using the smart TV, such as a video of the steps for turning it on and finding channels or a guide in Easy Read.

  • To arrange some training for staff in how to use the smart TV that could be recorded and available to any new or casual staff.

  • Regular communication between the team leader and Kerry about the progress that has been made, and barriers that may need to be addressed.

Indeed, Kerry spoke of other events that have pointed to a similar misalignment in goals regarding Catherine’s support. For example, a couple of years ago Kerry suggested they spend some of Catherine’s NDIS funding for one-on-one support and try out a hot springs facility as an alternative water-based experience for Catherine, who loves swimming and water play.

Again, Kerry hoped the suggestion would enable Catherine to try something new, deviating from her usual routine of swimming at the local pool. However, her suggestion faced resistance, and the priority of returning home at an established hour took precedence over creating a new experience for Catherine. This indicated to Kerry the team at the house were not fully committed to broadening Catherine’s experiences beyond her usual routine. “I don't understand why it was an issue”, she said. Such challenges emphasise the need for effective communication and collaboration between families and service providers to ensure the best possible outcomes for individuals with disabilities.

This example might be considered as a micro-change that requires good communication to make it successful. The team leader would need to:

  • Communicate to Catherine about the proposed change and seek her views.

  • Assess any risks at the hot springs facility and if necessary make changes in staff rosters and the ratio of support workers.

  • Review the current contract of support, and whether additional funding is required.

  • Communicate to staff team members about the new arrangements and that the usual return time is no longer required.

  • If staff want to return home to the group home at the established hour, explore reasons for this (which might be appropriate or inappropriate) and how those concerns might be remedied.

  • Communication by the team leader back to Kerry.

Many people supported, families and support workers share values aligned with the primary principles of the NDIS, such a choice and control, and the broadening of experiences to improve quality of life for the person being supported. Where values are aligned but things still go wrong, the remedies might be found in improved communication and the appropriate management of micro-change.

Effective leadership at the frontline is critical in shaping the culture of group homes, and the values and attitudes of team leaders can have a significant impact on the people being supported. Families recognise this impact and have shared their experiences, with some highlighting inadequate leadership resulting in negative outcomes, while others have praised positive attitudes and behaviours improving the quality of their relative’s wellbeing. One sister, commenting on the team leader who oversees her brother’s group home, said, “I love her energy and her passion for people with a disability. I mean, she’s close to them. They relate to her. She talks to them. You can have a person who has all the administrative skills in the world and that can run a house efficiently, but if they don’t have the passion and pull, they’ll never warm to her.”

However, communication breakdowns arising from staff instability, a lack of strong leadership and a mismatch in values and objectives between families and service providers can leave individuals feeling unsupported and unheard. Group homes that foster a culture of support and recognise the distinct viewpoints of families can facilitate successful working relationships between service providers and families, ultimately improving the quality of life for those with disabilities.

Conclusions

For people with intellectual disabilities, such as Kenneth and those mentioned in the introduction, the way in which support and personal care are provided is just as important as what is provided. Support workers and managers must always give attention to how the interaction with people, to building relationships and enabling people to feel at ease.

For Jenny, Gerald and Rosemarie, as family members, strong team leadership can help embed a culture of accountability and enable constructive collaboration between families and service providers. By establishing clear expectations and regular communication channels, a more open dialogue can be created to ensure the individual with disability’s needs and preferences are being met. This type of constructive relationship can help prevent conflicts (not disagreements) and instead lead to effective communication aimed at improving the individual’s life (Mayer, 2009). Indeed, as has been reported, some family members praised positive attitudes and pointed to the behaviours of team leaders that improved the quality of their relative’s wellbeing.

Person-centred Active Support and Frontline Practice Leadership are identified as key evidence informed practices that improve quality of life for individuals in group homes (Bigby, 2023). The experiences shared by individuals with disabilities and families in this chapter can also provide valuable guidance for practitioners and managers in the disability sector, highlighting the need for collaborative and person-centred support.

It is crucial to recognise the importance of centring the voices of people with disabilities in identifying their support needs and preferences. By considering the perceptions and understandings of individuals with disabilities and their families, practitioners can gain a more holistic understanding of a person’s needs and preferences.

First, service providers should prioritise effective communication with individuals with disabilities and their families to establish an open dialogue about mutual expectations, needs and concerns. This requires clear and transparent communication channels, regular updates and a willingness to listen and respond to feedback.

Second, service providers should promote a culture of accountability and teamwork, through strong Frontline Practice Leadership and training that equips staff with the skills they need. Training programmes should prioritise skills in providing sensitive personal care, and supporting communication, choice and engagement of the people they support through staff use of Active Support, as well as empathy and strategies for collaborating with families.

Third, service providers should support the maintenance of family relationships where appropriate, recognising the value of diverse perspectives in decision-making and support planning processes. This can help gain a more holistic view of a person’s needs and preferences and help in working together to provide person-centred support that enhances the quality of life and wellbeing for people with disabilities.

Fourth, service providers should enable people with disabilities to expand their social connections by engaging them in activities that align with their interests, foster regular community involvement and facilitate meaningful social interactions within the local community. To enable effective support and engagement in social activities that broaden and strengthen social networks, service providers should prioritise getting to know the person on an individual basis.

Overall, by adopting these strategies and working closely with individuals with disabilities and families, service providers can promote better quality of life and meet the diverse support needs of people in group homes while honouring their voices and individuality.

Take Home Messages

  • Ensuring that the “voice” of the person being supported is heard is fundamental to good quality support. For those who cannot express their needs and preferences, every attempt must be made to interpret their will and preferences.

  • Usually, family and other supporters are allies in providing good quality support. Team members should seek sound relationships with families and other supporters.

  • Encourage open disclosure: acknowledging and disclosing errors helps maintain trust and promotes the rights and wellbeing of individuals with disabilities.

  • Consistent leadership and staff retention strategies are key to empowering families and ensuring the wellbeing of individuals in group homes.

  • Support for engagement in activities and respectful conversations significantly enhance residents’ wellbeing and satisfaction with support.

  • Innovative tools, such as short videos, can help convey important information about residents, enabling new staff to quickly understand and support the person effectively.