The Profile Study
In 2015 we commissioned a study of six of our families. The parents were interviewed by the researcher
Kir Larwill and this paper was the result:
Stories from QLO Families:
QLO and this report 4
The families. 5
Aaron, Jim and Yvonne. 5
Alena, Wanda and John. 7
Michael, Greg and Margaret 9
Natalie, Yvonne and Ian. 11
Sally, Graeme and Meredith. 13
Susan and Helen. 14
Common threads. 17
What’s essential for their adult sons and daughters. 17
What’s essential for themselves as parents. 18
The broader context 19
Ageing carers. 19
Ageing well 19
“It’s up to us … we have to plan … we need to be ready” (Noela Foreman, QLO Chair).
Quality Living Options (QLO) is an advocacy group established by and for families in which older parents are caring for adult children with a disability.
Drawing on the collective resourcefulness and strength developed over years of parenting and advocacy, QLO aims to build appropriate and innovative housing for adults with a disability. The housing they envisage will be a place where people can feel a sense of belonging and live a good life. A place where it is safe, where support is available, and where there is opportunity to connect with neighbours, family and community.
The purpose of this report is to provide insight into the lives and aims of families who make up QLO, and to build a richer understanding of what they are advocating for. It does this through:
· stories that convey the experiences, views and hopes of six families;
· a summary of the themes that emerge in these stories; and
· a brief look at what’s known from research about ageing carers and ageing well.
The stories that follow are based on informal one to one interviews held with six families selected from the QLO membership. Selection was made in consultation with the Chair of QLO, with a view to representing a range of experiences and views, and each selected family was invited to take part in the research.
Their generosity and openness is warmly acknowledged.
“It’s harder than it was for us ten years ago … we live fatigued … he is 24/7 and we are never at 100%”.
Aaron and his parents, Jim and Yvonne, live in a family home filled with the life of family. Jim’s art on the walls, family gatherings and celebrations captured in framed photos, shelves of favourite movies near the TV, and a huge outdoor BBQ area that feels like it could hold a cast of thousands. The kind of place that has become the traditional location for end of year staff parties.
For Aaron it’s a home in every sense. Where there’s company and conversation. Where things are familiar and where he has his own space to listen to music, read books, and watch the videos he’s keen on. Aaron was diagnosed at the age of 9 with Expanded Strauss Syndrome. He has mild cerebral palsy and an intellectual disability. He requires constant care in all aspects of life, including personal care.
Given this, Yvonne and Jim are careful to create a place that feels stable, where there is regular and predictable routine in the rhythm of the day and the running of the house, where meals are healthy and where preparing food is a shared activity. They know that Aaron is at his best and most comfortable when there’s not too much change, and when there’s plenty of warmth and conversation.
Home provides a strong base for doing whatever Aaron’s keen to do in the community and through a disability support service, whether that’s 10-pin bowling or having a counter tea: “everyday things you would expect anyone to be doing”. This includes having time away from home. Aaron gets a lot of enjoyment from occasional stays in a respite house. He values the social side of respite and the opportunities it has provided for developing relationships, through common interests such as computers, and through sharing the same living environment with others. Having stayed there regularly over recent years, it has become a familiar place.
For Yvonne and Jim, now in their early 70s, these times away – “us away from him and him away from us” - have been a plus for them as well. It has meant that they have been able to get away, to travel. This has felt like a novelty, enabling them to feel “like free agents”, when throughout their parenting lives, as they put it:
“Aaron is the first thought we have, whenever we do anything … it can be easier to stay home. The thing is, when we are away, we can make choices for ourselves … we can make our own decisions for ourselves without having to think about Aaron”.
The significance of being able to have a break from their caring role, and be without immediate responsibility for a short while, looms larger as Jim and Yvonne get older and supporting Aaron at home remains a constant: “It’s harder than it was for us ten years ago … we live fatigued … he is 24/7 and we are never at 100%”. They could not be more acutely aware of the uncertainty of the future, and the fact that “home support” for Aaron is something that’s possible only “while [they] are still capable”. They feel determined to ensure that Aaron’s siblings aren’t expected to take on his care when Jim and Yvonne can no longer provide it themselves.
Given the good experiences they have all had with respite, what Jim and Yvonne are aiming for is to be able to support a gradual transition for Aaron into a new home. Perhaps weekdays to start with, coming back to the family home on weekends, and gradually developing a sense of the new place being his home.
So, for the Bowman family, what exactly would a ‘quality living option’ look like for Aaron in the future? What might constitute home? When they say that “home is very important to Aaron”, this means a lot. It implies the kind of loving, stable, personalised environment that their family home is, and the lifestyle it provides. Good, home-cooked meals and space that’s identifiably Aaron’s.
“He needs his own space and his own room … all his own things … this is very very important. Privacy, with the option of communal space amongst others who are compatible with him”.
‘Home’ also incorporates kindness and genuine, professional care. This means staff with a willingness and capacity to take the time to see and understand Aaron as an individual, be able to communicate with him, know what messages he is giving and the ways he gives them. The specifics of personal care, things that Jim and Yvonne have undertaken throughout Aaron’s life, are equally integral to what ‘quality living’ is: “being looked after as we would expect”. For Aaron, this includes skin care, including daily moisturising, ensuring his clothes and bedlinen are fresh and clean, and being able to respond to him during frequent wakeful and often agitated moments at night: “We want there to be someone who can and who will do this”.
‘Quality living’, a good life, also means to the Bowman’s somewhere you can come and go from with ease, and when you choose. Transport is a big factor in this, perhaps access to a vehicle. And a little closer to home, outside space that’s landscaped and “homely”, a yard with space to have a BBQ. And for those times when Aaron would rather stay put, is feeling tired, or unwell, a ‘quality living option’ needs to enable this, not hinder it, with care staff available outside strict service-oriented hours.
At the stage of life they are at as carers, Jim and Yvonne see working with other parents in Quality Living Options (QLO) as a positive thing:
“We’ve had so many doors shut over the past 20 years … it’s frustrating from our point of view … this has a degree of positivity”.
What they value is the opportunity QLO provides for families to do things for themselves, to be able to develop housing where they are in control of decision making about who and what combination of people share the home. Where it is community rather than government controlled, and is both “grassroots and small scale”:
“a safe home, a home away from home with a lifestyle that they are accustomed to … [the knowledge] that it’s permanent and has good 24/7 care”.
“What you are looking for is as close a replication as possible to home” (Wanda).
Wanda, John and their daughter Alena live on the edge of Bendigo, in a house surrounded by bush, sheds and a dam. It’s clear that theirs is a family that’s lived in the outdoors, with plenty of space to work, make and grow things, and to sit and enjoy the environment. A small farm. The home has been a family gathering place, and still is. Alena’s siblings now have their own young families.
Alena has Down Syndrome and has developed several medical problems as she has aged. She has mild Epilepsy, Hypothyroidism, Psychosis and Coeliac Disease. She has medication for these and is on a strict Gluten free diet.
Nonetheless, Alena’s is a busy life. She has recently started working in the design team at a big social enterprise established in the centre of town by a local disability centre. She loves live theatre, visiting art galleries, looking in the shops, hiring and watching movies, and making art herself. She also enjoys day to day things like shopping at the supermarket: “Things that make up the fabric of life”.
All this happens with the support of her parents and with the family home as a solid foundation:
“Love is the most important thing … love in the home” (Wanda).
Wanda and John support Alena “emotionally and practically”. They help with transport (Alena has difficulty walking long distances) dropping her off and picking her up from work and other commitments. They also support Alena with monitoring medication, and being attentive to dietary needs and food: “things that mothers look for naturally” (Wanda).
More recently, John has faced some significant health challenges. The impacts of this experience, and a growing awareness of ageing, has meant the future is very much on Wanda and John’s minds:
“We have already had a fright with John’s health, and anything could happen in the next 10 years … 10 years will see a lot of difference in how we are thinking … even now we are looking at moving [somewhere smaller]” (Wanda).
Like other parents in the QLO group, they are concerned that responsibility for Alena’s future care not fall to Alena’s siblings: “Our children all have young families … It’s a big ask … care, transport … it would almost be impossible for a young family with young kids … visits, holidays and occasional support, yes, but ….”.
In response to these worries, both Wanda and John feel a need to plan and be active about setting things up as best they can to ensure Alena can continue to live a good life. When they talk about this future, and about a time when they are no longer able to care for Alena, both parents are very aware of the limited options:
“If we can’t look after her, what’s the next option? At the moment there are only living centres for older people … all we have at the moment is aged care” (Wanda).
To Wanda and John, what might constitute a ‘quality living option’ for Alena is in fact somewhere that most closely replicates the family home. In particular, they talk about Alena being cared for “properly and genuinely”, by people who she trusts. This includes having stable, consistent staff where good relationships can develop. They also talk about Alena being able to live with or alongside people who are compatible, people she knows or can easily get to know, and people “whose behaviour is not aggressive or hostile”. With the right mix of flatmates or neighbours, a good living situation would also enable Alena to continue to do the things that she loves, in company: “having fun times, going to the movies, to the show together … being able to join in with what’s going on”.
In terms of the design and organisation of a future home, an ensuite would be ideal, as would the space for carers to be able to stay. This would enable 24 hour supervision, something that Wanda and John see as important as a source of support as well as a means of enabling people who live in the home to come and go as they choose, unrestricted by traditional service rosters:
“There needs to be someone there if they have a sick day … in respite house they have to be [out of the house] between 9.00 and 3.00 … if it’s a real home you would have to have that in place, someone to stay with her … and what happens on holidays for example, when services are closed?” (Wanda).
Wanda and John have committed themselves to the work of QLO as a way of doing something proactive to establish a ‘living option’ for Alena that’s much closer to their ideal.
“I wanted to get behind QLO. They are trying to improve on what’s happened in the past” (Wanda).
They value the potential QLO provides for families to do things for themselves, and work together to develop “real homes” for their adult children characterised by genuine care and support.
Michael, Greg and Margaret
“I don’t think we should rely on our kids to take on their siblings in later life”.
Margaret is the mother of Michael and Greg, twin brothers, aged 41.
For some years now Michael and Greg have lived in a house in Bendigo. They share shopping, cooking and meals, and the general work of keeping a house. Their house feels lived in and homely, with the accumulated things of life you’d expect to see in a place that’s been home for two adults for a long time. The hall is lined with artwork and photos of family gatherings. There’s a front verandah to sit out on, a garage for Michael’s car, and a small garden. There’s also a much-loved cat.
The house is close to the centre of town and the neighbourhood is familiar. It’s close to the hospital, to the lake, and to shops. There are also quite a few supermarkets locally.
Both Michael and Greg value the independence and day to day routines of living as they do. Being able to drive to the supermarket, have a pet, live amongst neighbours they know and who know them. Both have been studying at Continuing Education for some years, however, and would value alternative ways of spending their time. As Margaret puts it, “At 41 they don’t really want to go to class every day until they die”. Michael looks forward to “having a lady friend” to share life with, and to finding opportunities that would enable him to meet new people. All three of them feel that it would be good if, in future, Greg and Michael could have a single unit each, with continued support and social contact.
Both men have faced lifelong challenges associated with their disability. Michael has autism and has difficulties emotionally and socially. He has an intellectual disability, the result of oxygen deprivation before and during his birth, and suffers from epilepsy, depression, and a degree of obsessive compulsive disorder which Margaret says is increasing with age. Greg also has an intellectual disability, autism, and has a pronounced fear of social interaction. He has been diagnosed with depression and lives with severe epilepsy. For Greg, life can be challenging:
“Although he tries to keep up with the world, [Greg] often has little real understanding. He has a real fear of change and thus lives on his nerves all the time” (Margaret).
At present Margaret supports both sons in the day to day running of the house. She has daily contact with Greg and provides regular help with decision-making, money management, reading, writing and bills. Keeping the wheels turning on the housekeeping front is also a big part of what Margaret helps with:
“The boys will always need a ‘dead and dying’ fridge cleaner!” (Margaret).
Whilst Michael and Greg manage a great deal independently, Margaret is keenly aware that “they need someone to watch over them in lots of ways” (Margaret). The neighbours know Michael and Greg well, so keep an eye out for them, but Margaret feels that, in any future living situation, it would be far better to have someone on site, overnight. Greg suffers from seizures, which can place him in danger, and Margaret is conscious that even without that more immediate risk, the level of support required in day to day living is significant in itself:
“They are both physically able but you forget how much they rely on you for things …. [Other adult children in QLO] are in a different category but to say they will be fine without any intervention … that won’t work” (Margaret).
Margaret shares the uncertainties of other parents with adult children who have a disability, other parents who are part of the QLO group. The question of who will continue in the caring role when she no longer can, is a constant worry, particularly the thought of the role falling to siblings: “I don’t think we should rely on our kids to take on their siblings in later life”. And where Greg and Michael live in future, what a ‘quality living option’ might look like for them, would need to incorporate this care, support and connection:
“It needs to be a place where those around them are non-judgmental … On a daily basis they need to be somewhere where they’d be in a bit of a community” (Margaret).
For Margaret, QLO provides a platform for working together with families and housing providers to come up with something that will work for Greg and Michael, and will be shaped by families themselves: “I’m hoping that it a continues and that we’re part of the housing taskforce with all the Bendigo providers”.
“I hope I live to 120 … we all want to outlive our children … it’s frightening” (Yvonne)
Natalie lives at home with her parents Yvonne and Ian.
Theirs is a generous house surrounded by a verandah and with lots of outdoor space to eat, play and make things. It’s an ordered and organised environment, designed to make things easier for Natalie, who is vision-impaired and is at her best in a peaceful environment where she has her own space to chill out in front of a movie or retreat for a bit of quiet.
Yvonne speaks warmly of her daughter’s strength and resilience, and her love of concerts and performance. She expresses pride in what Natalie’s achieved in life so far, including her primary and secondary education, learning of music, participation in the Great Victorian Bike Ride, competing in the Olympic swimming, and participating socially on many levels:
“She has such a broad range of interests … She is able to go anywhere … to act appropriately in all settings … she knows what a funeral is, what a wedding is …”
This achievement has, in Yvonne’s eyes, been very much against the odds. The strain and worry of this is palpable in how Yvonne’s speaks about Natalie’s life. Natalie has faced, and continues to face, major physical and health challenges that have limited her capacity to participate in things. She has lived a life in and out of hospital. In recent years she has undergone major surgery where the recovery has been prolonged and stressful. In addition, Natalie suffers from a skin condition, arthritis, allergies, thyroid problems, issues with feeding, issues with toileting and related vulnerability to infection.
The surgery in particular has changed things dramatically for Natalie and Yvonne. Natalie’s mobility has deteriorated and she needs to use a wheelchair in some situations. She also experiences considerable fatigue, and now spends most of her time at home. Yvonne describes the work of helping Natalie to get ready in the mornings, something that can take up to 2 hours and is “very hands on”.
All this means that, as Yvonne describes them, Natalie’s personal care needs are “complex”. She has had experience of Natalie not being tended to adequately, in hospital and in-home care situations, and the result of this has been “great suffering” for Natalie. Given this, it is difficult to entrust Natalie’s care to others, something that’s exacerbated by changeover in care staff:
“It’s difficult to trust that others will care for her, know about all her health needs … and there’ll be a different person next year ... The morning carers change all the time”.
All this has had considerable impact on Yvonne who is also faced with her own health issues, including chronic pain in her arm:
“It’s become very hard since [Natalie’s surgery] … I used to get time to do a few other things … my time is so limited, but I do have help to take her places”.
Despite a long history of caring and advocacy for her daughter, working with other families to seek funding for early intervention and education, Yvonne is very aware of her own ageing, is exhausted and is fearful for Natalie’s future:
“It’s really hard and frightening for me to envisage it … she’s going to struggle”.
As it is with other QLO parents, it’s hard for Yvonne to imagine anyone other than a parent being able to truly exercise discretion, and respond genuinely to Natalie’s immediate individual needs:
“It’s a case of knowing her and working it out …. Looking for new things that might help … you have to keep thinking about how to make things better for her … a residential unit won’t do that … that will stop when I die …. It’s not that people don’t want to do these things, but they’re not allowed.”
Despite her worry and distrust, Yvonne is clear what kind of ‘living option’ would work best for Natalie. It would, firstly, incorporate one to one, full time care. The care provided would need to include attention to health and medical needs, and capacity to tend to these. As with other QLO families, the home envisaged would be for small numbers of people, with careful consideration going into compatibility:
“The more people there are in the house the less Natalie will move around … I would like her in a home where there’s no more than three and they would have to be compatible … but maybe she could adjust to a house of 4 or 5”.
Either way, the house needs to feel like a home. This includes decision making resting with families, so that there is capacity for parents to have a say about the running of the place. It also includes those who live there being able to maintain connections and involvement with the community, and to do this on their own terms:
“It would be good to get a house that will suit our kids and they can come and go as they please … continue life as it is now … and feel they can go back to a place that is home”.
“It’s a lifetime of teaching and a never ending learning process but that’s the life Sally’s been given” (Meredith).
Meredith and Graeme are carers for their daughter Sally, who is 30.
“A gorgeous joy of a person” with a “cheeky sense of humour”, Sally loves listening to music, swimming, bowling, travelling on the train and going to the movies. Much of her week (5 days), she participates at a disability support service. Sally needs full time care to do all these things – “assistance with pretty much everything”:
“It’s like she’s part of the person who’s with her because she has to be totally guided by that person”.
Sally has a severe intellectual disability and autism, as well as suffering from anxiety. This means that she “require supervision all the time”, is “unaware of the dangers of things”, and “finds it difficult to make the right decisions, about what to eat, for example”. It also means that she experiences great difficulty adapting to change, and “has a lot of trouble coping with a lot of people or activity” or with “stressful situations”.
At the moment, Sally’s living situation with her parents is characterised by things being very organised, quiet, calm, and having “someone tuned into her all the time”:
“It can be boring for Sally at home! There aren’t a lot of visitors because of her situation. It’s hard to socialise because we need to concentrate on Sally all the time”
It’s also characterised, of course, by a very deep love and understanding, something it’s hard for Meredith to imagine being replicated anywhere other than the parental home:
“We see the full picture, everything, with diet, behaviour, sleep …. People working with her only see her for that small window of her life …”
“People need to know very individual, personal, specific things about her”
This is particularly important to Meredith when considering what’s required for Sally’s physical care. Sally is incontinent and requires supervision and full assistance. People providing this care need to be “familiar, aware, understanding, and not judgmental … it doesn’t work if Sally senses she is being reprimanded … there’s a lot of psychology involved! And kindness, and [respect for her] dignity”.
Meredith has arranged respite for Sally in the past, and the experience has been good when Sally has 1:1 support, knows the carers, the staff are stable, and they are familiar with Sally and her requirements. There needs to be a space to enable Sally to withdraw from company, or from socialising, if she needs in a separate, quieter space with a staff person.
For the future, Meredith knows that ‘quality living’ for Sally would need to incorporate focussed and very personalised care. Whilst finding it impossible to imagine anything replicating the family home and all it means for Sally, Meredith is aware of the kind of environment necessary for Sally to live a good life:
“What would be good is a caring, loving situation. A peaceful situation, one with no aggression …”
Meredith sees working together with other families in QLO as a “fantastic and worthwhile” thing. She very much values the determination of the group, and the driving force provided by the Chairperson’s skills and perseverance. She also empathises very keenly with the situations of older parents in the group:
“When I first went I saw these people 20 years older than me still looking after their children. This is a desperate situation when they can no longer look after their children”.
Whilst other QLO members’ lives as parents and carers might be in a different chapter to Meredith and Graeme’s, the worry of what the future holds, and how to plan and act now to make sure their adult children continue to live in safe, secure, appropriate and caring homes, is universal:
“It’s a long, long term battle, but it’s made the community aware that this is a real dilemma … when we come to that point with Sally … what is going to happen given her special needs?”.
“You sit back as a parent and think ‘what’s going to happen? … what’s the best plan I can put in place?’ … there’s nothing around … so if we want to do something we’re going to have to do something about it ourselves”
Helen is a sole parent and carer for her daughter Susan.
They have recently moved into a quieter area of Bendigo, to a house that feels secure, spacious and calm. This suits them well, but is particularly good for Susan, who prefers a peaceful environment. She also likes her own space. Susan’s bedroom is filled with the things she loves, and she can also spread out in a workroom that includes a desk and chair and plenty of space for drawing materials, videos, books, games and collected things.
Susan was born with Down Syndrome and as a result of trauma, at around thirty years of age, she was diagnosed with depression, a severe anxiety disorder and subsequently, Obsessive Compulsive behaviour - all of which she receives ongoing long term treatment for.
Aware of what works best for Susan, Helen works at keeping the home-front calm and predictable, an environment shaped to suit Susan’s needs and support her in keeping anxiety and related anger and distress at bay. This regime is complemented by medication and is most effective when, as a parent, Helen feels that she is backed up by staff in services that Susan uses: “supporting what I am trying to do at home”:
“She is happier and calmer than she has been for 20 years. It’s important that people aren’t trying to change her … instead of accepting her as she is … allowing her to be herself”.
This ongoing caring role is, of course, huge and at times overwhelming. Not least as Helen looks at her peers and the flexibility that being at retirement age usually brings:
“I’ve got to be honest and say that there are days when I envy people who are retired who can please themselves where they go and when, they’re not running to a clock … and it can just be too hard to set up some care”.
They have, however, had recent success with respite care that Susan enjoys. In the past, other options haven’t worked and Susan has been distressed. Currently, they have a place where staff have been well-selected and they are thoughtful about which staff are rostered – “Susan relates more to staff than peers so that’s important”. It is set up to be “just like home”, where you can make cups of tea for yourself and “people are spoken to as equals”. The result of this for Helen is wonderful:
“It’s been a definite, big, positive thing. Before that Susan didn’t have anywhere to go that she was happy with. I can go away and relax … I know she’s happy … they listen to me and they listen to her and they’re not defensive. They care about each client as an individual”.
For Helen, given available funding, using this respite regularly would provide an ideal way of supporting Susan to make a gradual transition into living independently from her mother. Not least because it is a familiar, trusted and caring environment, and has the potential to also offer day programs that Susan might enjoy:
“If she had the funding to have regular respite, that would help her break emotional dependence … to be able to gradually get her used to being in another environment so that when QLO do get that house it will be a much easier transition … I don’t want to be in a situation where something happens suddenly and she is put somewhere where the staff and the place are unknown”.
The definition of a ‘quality living option’ for Helen and Susan are integrally connected with being able to have a say over the environment, the way its run and staffed, and the extent to which it is able to replicate the calm and responsive home environment that Helen has been able to create and maintain.
Given the opportunity to have that say, Helen would advocate for Susan to live somewhere where there are 5 or 6 compatible people sharing, with care taken in selecting this group:
“It’s so important we have control over who lives in the house. We know the kids best and we know the triggers … “.
It would be a house with 24 hour staffing, and the flexibility of a home rather than a service: “if they’re sick, or don’t want to go to work, they should be able to stay home”. It would be in a community, in the centre of things, “not on the outskirts”, in a supportive setting “like you would have in a country town”. And the house itself would need to enable Susan to have her own space, a big bedroom where it would be possible to fit a desk and a chair, and ideally ensuite facilities. In addition, two living areas would mean that Susan could choose to do her own thing, could participate in programs if and when she chose, and otherwise would be surrounded by the usual happenings of a household: running the house, preparing food, shared activities when they arise naturally.
“Nothing’s going to be ideal, but it’s going to be as close as what we can get … it will never be like at home … but it needs to be respected that it’s their place, and doesn’t belong to staff, or a service”.
For Helen, the strength of the collaborative effort of QLO lies in it being driven by parents themselves, carers working to create their own solutions to the future housing needs of their adult children: “It’s so important that we have a say as parents about where they are going to live”. And for Helen, there is increasing urgency in this:
“It’s become so important to me because I now have health issues and I worry the day will come when I can’t give her the care she requires … I don’t want to leave that burden to her big sister … I’d like to have it set up well before then”.
Whilst each family’s situation and experiences are unique, they clearly share much in common. Their stories highlight a range of important themes. These themes encapsulate families’ main concerns and what they see as a good future life for their adult children.
The six families share resilience, perseverance, advocacy skills and determination to ensure the best possible life for their sons and daughters. This is mixed with humour, often overlaid by exhaustion, and invariably tinged with worry and fear for the future. Families expressed concern that:
1. Time is running out, and that they will find themselves unable to continue in the caring role before a secure and suitable home is in place for their adult child.
2. Come the time that they are no longer able to be the primary carer, other adult children must not be expected or compelled to take over the care of their sibling.
3. Currently, there are very few suitable housing options available.
4. When as parents they are no longer the main carers, quality of care will deteriorate, including a loss of attention to and genuine concern for their daughter or son’s personal and health care needs.
5. Living in care, outside the family home, the independence and social connectedness of their adult child will not be maintained.
6. The future well-being and happiness of the person they care for will be at risk when they are no longer able to provide the main care.
The concerns summarised above are directly shaped by a clear knowledge of what’s essential for their sons and daughters to continue living good lives, and what a future home should be. The six families expressed hope and determination that their adult children:
· continue to live lives that support their dignity, care and privacy;
· have access to company of their choosing, and are supported to make and maintain relationships in the community;
· are supported in their transition to a new place so that change can be as easy as possible, and familiarity with the new place is built slowly;
· have permanency in the place they live;
· receive care 24/7, and that this care be in-house, and consistent, with good professional staff and low staff turnover;
· live in a home that is located in a neighbourhood, amongst community, not isolated or on the outskirts of town; and
· live in houses that don’t feel like a service (like they are “run and ‘owned’ by staff” and shaped by the regimen of rostered hours), but instead feel like it’s their place, their home.
As parents, there was a clear sense that if good future lives are to be secured for their adult children, it’s necessary that as parents they:
· Have control over decision-making in whatever housing is developed, rather than control resting with government, and that this include being part of deciding who lives there and the compatibility of those people;
· Are listened to by paid carers, and respected for what they know about the needs, wishes and futures of their sons and daughters; and
· Are supported in their choices of how, and how gradually, the transition to a new home happens for them and for their son or daughter, and are then supported in making this transition work well for everyone.
QLO, its members’ experiences and its aims as an advocacy organisation are part of a bigger picture.
Ageing carers are in growing company. Australia’s population is ageing. As this happens, the number of older parent-carers of a son or daughter with a disability will also increase in coming decades[i].
In Victoria, at the 2006 Census, there were nearly 5000 parents aged 65 years and older who were living with a son or daughter with a more severe disability[ii]. Across Australia, the estimated number of ageing parent primary carers (aged 65 years and over) increased from 6,400 in 2003 to 16,800 in 2009[iii].
The lives of these families can often be ones of economic challenge. The older the parent carer, the lower their family income[iv]. This disadvantage is cumulative. The lower family income of parent carers as they age is consistent with lower employment rates in earlier life, as caring affects parents’ capacity to work and consequently their incomes in retirement[v]. The same is true of the son or daughter they care for. This person is likely to have had little experience of and opportunity for work, so is therefore unlikely to have income saved for their older years.
The families’ disadvantage is also, commonly, broader than income and savings. The impacts of caring are broad. This was highlighted by a recent evaluation of a carer support program run by Anglicare in Sydney:
Ageing carers may have been caring for their child for five or six decades. Their care-giving is virtually a life-long ‘career’ and affects them in significant ways – financially, socially and emotionally and in their life choices. Most carers live with the person for whom they care, which requires a 24 hour, 7 day a week, all year round commitment, that is only relieved occasionally by respite care”[vi].
A lack of options for future housing is a compounding factor in this experience. This has been voiced nationally. The 2011 Senate Affairs Committee Disability and Ageing Inquiry, highlighted the lack of accommodation choices and the difficulties experienced by adults with a disability moving to care outside the home[vii].
Behind the research, and the way we interpret it, is a shared understanding of the ideal - of what is desirable and, in fact, essential for someone to have a good life as they age, whether they are a carer or whether they are the family member being cared for.
Exactly what constitutes a good life, and ageing well, has also been a subject of research. Drawing directly on how older people and their families defined “a good life”, an Australian project revealed six themes[viii]. They embody a vision for living (and ageing) well and provide a way of conceptualising which aspects of a person’s life are well nourished, and which need strengthening:
· Uniqueness (Life experience, strengths, culture and spirituality – no two lives are the same);
· Being in control (My life is mine, I am my own boss, I make my own decisions);
· Optimism (A sense of future, of hope, anticipating tomorrow and working towards goals);
· Belonging (Variety of relationships with other people, everyday roles, rhythms, routines, experiences and emotions that are part of everyday life at any age);
· Contribution and engagement (to give and take, enjoy the fullness of life, pursue interests and passions);
· Healthy (I am as healthy as I can be).
Unsurprisingly, these six themes all connect with what the QLO families see as essential for their adult children to live well into older age, and to live in secure and appropriate homes that are set up to enable them to do that.
[i] Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 1.
[ii] Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 3.
[iii] Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 1.
[iv] 2006 Census figures, cited by Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 4.
[v] Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 4.
[vi] Bellamy, J., Paleologas, Z., Kemp, B., carter, C. and King, S. (2014) Caring into Old Age: The Wellbeing and Support Needs of Parent Carers of People with a Disability”, p. 9.
[vii] Cited in Qu, L., Edwards, B. and Gray, M (2012) “Ageing Parent Carers of people with a Disability”. Melbourne: Australian Institute of Family Studies (AIFS), p. 1.
[viii] http://www.accreditation.org.au/site/uploads/files/Kate%20Barnett.pdf drawing on Barnett K & Dean M (2012) Identifying the evidence base for the concept ‘What is a Good Life’? Final Report: Matching research evidence to the Good Lives model. Adelaide: Australian Workplace Innovation and Social Research Centre, The University of Adelaide. As yet unpublished report