Open letter to Group Homes Australia

Screen Shot 2015-11-02 at 11.49.33 amAfter my blog yesterday, talking about safety vs autonomy, and my feelings about the traditional styles of residential care, I felt it important to also say, there are many in the sector wanting to improve things for people with dementia and their families. There are, as highlighted in some comments, many family care partners who also want much better for us, and who do not wish to ‘dump’ us anywhere, nor place us into facilities that do not provide optimal care. Although, as I discovered, sometimes if there is a crisis there is little choice.

Also, I realise fully that almost all care partners want the nest for the person they support with dementia, and would not ever want to come across as critical of them. Sometimes, I may ask for new ways of communicating with us, or behaving towards us, to improve our experience, and the bonus for a person providing support for us, is their experience will likely improve as well. It is always meant to be win-win. Often though, the Prescribed Disengagement ® has already set us all up to fail.

So, today I am adding an open letter, not actually sent yet to Tamar Krebs and her A-team at Group Homes Australia, but I fell sure once she reads it, she won’t be unhappy! But, if there is a provider wanting to look at new ways to provide residential support for us, or a care partner looking at options, do connect with them. I would, quite happily live in one of their homes… They have somehow found a way to ensure autonomy and safety are working in harmony, in a way that does not seem to demean anyone, or make anyone feel locked up.

thank youAn Open Letter:

Dear Tamar, Jonathon, staff and residents,

To say it was a privilege to visit and spend time with everyone at Group Homes Australia is an understatement. Bravely and fearlessly led by the founder, Tamar Krebs, I can only say I feel Blessed and honoured. Tamar, and Jonathon (Gavishon) hosted my two days with them, ensuring my time was more than well spent.

For some background, I had agreed to work with their team, and to participate in a public forum, giving a short presentation as well as participate on a panel. The whole time, I was looked after as if I was a member of their family. It also appeared to me that those paying for their ‘accommodation’ otherwise known as ‘residential care’ were being supported as if they were family. This style of residential accommodation and care is the best I have seen in Australia, and I would be keen to visit other countries to compare their versions of ‘group homes’ or dementia villages, although already doubt anyone is doing it better.

What I felt when I was driven up to each of the three group homes I visited, was that they were indistinguishable amongst all the other residences in the street and suburb. They did not have emblazoned on the front door or gate “Group Homes Australia”. They preferred instead, to ensure the dignity of those living there, and finding other ways to promote themselves. As I entered each home, there was a lock to the front door, but, if it was my home, I would also lock out any possible intruders or visitors, only allowing them entry upon ringing the door bell. So, not locked in, simply doing the same as I would do in m own home.

Upon entering each home, all with its own individual style and flair, and the feeling of being a guest in someone’s home was overwhelming. I definitely had no sense I was visiting a ‘facility providing residential care’. There were people in rooms folding up the washing, staff and residents in the kitchen preparing meals; smells of cooking, and not a hint of urine. Doors that opened out onto gardens and recreational areas, with washing lines, and one even with a swimming pool. Laundries in working order, various areas to sit and relax or play cards or watch television. Freshly cut flowers around the homes. Rooms, some with en suite bathrooms, some not, just like most private homes. Many with double beds, and individualised furnishings and personal belongings. Picture frames around the homes, belonging to the people living there, corners with nick-knacks of meaning, not meaningless, cheap pastel prints on walls.

Staff who sounded and looked like family members. Family members sitting around relaxing waiting for a mother to return from some shopping. Dining rooms, allowing for mingling and shared meals, and smaller eating areas allowing for more privacy. Meals also served in bed rooms, and at times suited to each individual. The Finance Director had not had lunch, so he joined the group in the kitchen to make himself some toast. It felt, looked and sounded like one big family, sharing time together.

It was easy to chat to the residents of these homes; every person on site seemed at home, and at ease, and it looked … and more importantly, it felt like I was visiting them in their own private homes. Unusually, the founder and CEO, the senior staff, the new staff, the less senior staff, and the volunteers, and those living on the homes were all ‘working’ together, no sense of hierarchy or management, pay-role differences or class distinction. In fact, there was no sense anyone was even working!

It was also hard to tell the staff apart from the residents, other than by age. It felt like everyone either lived there, or was a family member visiting. An office in a garage of one of the homes, part of which is also used for storage for those things necessary for people requiring 24 hour assistance to live, felt like a ‘normal’ attachment to the home, rather than a working office. The accountant wearing the gorgeous shoes (yes, my middle name could be Imelda!) attended the Leaders session the next day.

Quite frankly, having had to help find three beds for close family or friends requiring residential care, and having had to actively consider it for myself, this is the FIRST time, and ONLY time, I have felt I would or could move into ‘residential care’. As a person living with a diagnosis of dementia, I cannot tell you how much of a relief it felt to see someone who ‘gets’ it, and who has taken such a risk (financial, and professional) by refusing to do it as everyone else is doing it, and following their intuition, their heart, and actually ‘doing it’ so well. Someone brave enough not to wait for evidence, or regulation, of government funding to support a new model of residential care.

I may have helped this terrific group of people feel like they are on the right track with what they are doing, perhaps even validated this in some small way for them… but the gift that you have all given me, is that I was right to speak out at all, and to keep speaking out for ‘better’, and for what in my heart and soul, I felt ‘needed changing’. Like them I do not necessarily have the evidence based research, but my heart, my soul, and my practical experience as a family care partner, and as a person with a diagnosis of dementia, told me what the sector has been doing is not only been wrong, it is against our human rights. 

Tamar, Jonathon, you and your Group Homes Australia family – staff and residents alike – have validated my few years of often lonely, and often discounted work and ideas. I owe you all a deep gratitude of debt for helping me feel less alone, and to remain motivated to keep going, while I still can. 

I felt humbled, and for some days, even unable to write or blog, as it felt far more important to simply accept and allow the positive feedback you ALL gave me to sink in, and for the brilliance of what I felt for what Tamar, Jonathon and the team are doing, to ‘settle’ into my heart.

Thank you for being a fearless leader Tamar, thank you Jonathon for your practical support and terrific conversations, and very special thanks to your wonderful team.You have all given me hope.

Fondest wishes, thanks, and love to you all,

Kate Swaffer xox

26 thoughts on “Open letter to Group Homes Australia

  1. Pingback: Open Letter to Group Homes Australia - Group Homes Australia

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  3. Kate, Your description of “Group Homes” sounds wonderful. I know that there is a movement afoot to move from a “Hospital/Medical Model” of care for Dementia Residents to a “Home/Family Model” and I truly embrace that move.

    I also appreciated your “apology” to support facilities and caregivers who certainly are trying their best to provide loving, empathetic care for their spouses and family members, although not always under the best of circumstances.

    Sometimes, one must settle for the lesser evils! However, I believe that even in a “Hospital Model” facility, the care can be much more “Home Model” like. Also, the details of what might go on at any facility is often dictated by the stage of care that the residents might be at but that doesn’t mean they should have to “settle for less” than humane, best practices!

    I know that at Gregory’s facility, many if not most of the residents on his floor are not able to be as active and “family” oriented as we would hope, but the care and the ambience of the place certainly can be better. The health care, medical services are amazingly excellent, especially with residents who can not share their needs, discomforts, pains, and illness symptoms. The social/emotional environment, however can bemuch better.

    My continuing quest is to share my observations, having been with Gregory almost every day, with the administration, managers, doctors, and department heads, etc. I am excited and pleased that they are eager to hear my feedback and we have scheduled a lunch meeting (I’ll bring the food) in which I can share my observations and suggestions with everyone at one time and then open it to Q and A.

    Instead of giving compliments, observations, blames, suggestions for improvement, etc … I plan on creating a “fantasy story” of what the ideal Memory Care Unit could look like based on the Lieberman Center’s physical plant parameters and based on their target population of residents. Wish me luck. I will be sharing the story on my BLOG in the not too distant future.

    Thank you Kate, for helping me to continue to educate myself in the areas of: 1) care-giving, 2) appropriate language use when discussing Dementia/ Alzheimer’s, 3) seeking feedback from people diagnosed with Dementia on how they would like to cared for, 4) appropriate (if any) use of psychotropic drugs, 5) living beyond the diagnosis and living well with the diagnosis of Dementia/ Alzheimer’s, 6) and I am sure etc, etc etc!

    • Thank you Michael, for being who you are. An inspiring care partner to your beloved Gregory who you now have had to learn to live without, and a truly inspiring human being. There is a similar “Group Home” in Minnesota I believe, as recall Tamar said she had visited them. Not sure how far that is from you, but would be worth a visit one day. Ps. Lynda and I are working on the Sydney Film Festival for you!!! xx

  4. The Group Homes sound like a wonderful way to provide support. In many ways the concept of “Home Model” care vs “Hospital Model” care is slowly making headway. You apologize saying you do not want to be critical of those who love and care for family with Dementia/ Alzheimer’s and that is appreciated. In life, sometimes it is a question of choosing the “lesser of evils.” But one should never settle for that if better can be provided, promoted, discussed, demonstrated! What I saw with Gregory, also, if that most of the residents (and in many ways Gregory included,) were advanced enough that a lot of the amenities of a homelike environment just would not have worked. But there are many things that can be better at Lieberman and I continue my personal quest to share my observations and suggestions on how life can be MUCH BETTER, even if a “Home Model” of care is not possible. HOME can be brought into the HOSPITAL, if one is creative, observant, and caring! That is my quest at this time.

    • As you rightly say, “HOME can be brought into the HOSPITAL, if one is creative, observant, and caring!” Keep on with your quest with that, we are all right behind or alongside you dear Michael… xx

  5. Really pleased you’ve shared your fantastic experience Kate – it’s only by knowing what outstanding looks like that others can start to improve and aspire to create care homes that give people with dementia the dignity, autonomy and lifestyle they want xx

    • Thanks dear beth… and nearly +1 little Beth! We must aspire to better, for all. Overnight, I have been thinking if I could afford it, I’d want support to be brought into to my home, even if it was 24 hours a day. That way, my dignity, autonomy, and living in my own home could be maintained. No idea if that would be affordable, or practical, and sadly, I suspect not. Something to think about though!! Boris would prefer it too, as well as Pete and the boys xx

      • Dear Kate – no apology needed. It’s actually useful to notice one’s own “sore spots”!

        I’m so pleased to see you write about your own preferences for future care- a terrible challenge to our “denial bubbles”, eh?

        I plan for V to stay at home, with professional support, for as long as is possible, as long as she is happy & receives the best possible support and care to meet her needs. I’m no nurse, as you know, and I have my own physical disability & limitations. We may be able to make the necessary modifications to our home environment.

        However, the stark reality for people like us, who have no remaining capital and are dependent on the public purse as pensioners, is that we have already reached our maximum entitlement to support, i.e. the equivalent of 12 hpw from a careworker, via a level 4 home support package. As V doesn’t need that many hours of careworker time at present (though this was not always the case) we have been able to get friends with businesses to contract to V’s service provider so that she has the additional fun of interacting with old mates who do some of the gardening & cleaning to help me out. We have been “banking” the surplus in V’s personal CDC budget, on the understanding that the surplus can be rolled over from one year to the next, but have since been told that V risks losing her level 4 package if the surplus isn’t reduced!!!

        You can just imagine my reaction to this! Emails flying, demands for written guidelines, threatening to make formal complaints etc. I’m pretty sure that our situation will soon be sorted, but just think how many people are bullied into taking only the services that suit the provider’s bottom line interest in making a profit.

        Back to EOL care…. I have a local friend who is doing that at home for her husband. Like us, she has only 12hpw professional support, so someone comes in for an hour each morning and evening to help her bathe and turn him, and another friend, whose wife is also living with fairly advanced dementia, comes in on the 7th day, cooks her dinner & gets her to laugh, brings some shopping and also prepares pre-cooked meals to help her out during the coming week.

        Our friend hasn’t been able to leave home for months now. Her husband, once a national sports coach, is down to 40kg. I hope that their service provider will, like ours does, provide intensive team support under the direction of an RN for the final few days.

        We chose our service provider simply because they have a YOD facility just 20 minutes from us. They also specialize in palliative and end-of-life care. In fact, they’ve recently won a large state government tender, a research project to provide evidence of the benefits of medical cannabis during EOL care. They’ve also secured another contract to trial additional hours of in-home EOL support, giving people like us another 18 hours (total, not “per day”) of professional support, in the hope that this will prove cheaper for the state than hospital admissions for the actual dying process.

        Do I sound cynical? You bet I am, and quietly, endlessly angry. Most people living with/alongside YOD have their financial security shattered by it. Some of us care partners live in constant fear for our own futures as we face our own personal challenges of ageing, health issues and increasing disabilities. Like you, we survive and thrive when we can rebuild our “denial bubbles” each time they get pierced.

        By the way, V’s service provider takes more than a third of her budget for “case management”. The so-called “care plan” hasn’t been updated in 18 months-it’s quite simply inaccurate & woefully inadequate. I had let the matter slide as it was more important to build a team of committed careworkers around V, but I showed it to our mutual Twitter retired RN friend while we were staying with her recently, saying “Now do you understand why I asked for help with care planning more than a year ago?” So with her help, I’m now about to rewrite the entire thing myself….and I wonder how long I can keep on like this, educating careworkers, educating myself, doing the physical work that kills my back, unable to follow my own rehab plan for lack of time alone. Will I be able to bring about what both V and I want?

        Quite possibly not, though I’ll do my darnedest. I’ve assisted in the EOL care for a friend who died of cancer, surrounded by a team of 4 of us friends, plus the palliative care team from her specialist hospital unit. OTs, PTs, RNs, oncologists visited her regularly at home, all equipment & meds were free. She had the dying that she wanted and deserved.

        But she had cancer, not dementia.

        My mother, who herself chose residential care at 89, died a beautiful natural death at 93. Superb nursing- a nurse practitioner who led teams of smart RNs, ENs and careworkers. My sister and I slept in her large, airy room for the 5 days that it took her to die. All was transparent, agreed by all parties ahead of time, and she was able to experience what she wanted and how she wanted her end of life to be. My mother was fit, had a better lifestyle than most of us all her life, in her 70s and 80s had walked the Kokoda trail, climbed to Machu Pichu, trekked in Nepal and finally climbed a peak in the Antarctic at 85!! Quite a gal, and she didn’t let loose her grip on life in any hurry.

        V is similarly strong, in spirit and in body. She probably won’t end up in the YOD facility that has only 10 places, except perhaps to give me a long respite break at some stage. If we can’t get more support, or if I crumble, her worst nightmare may come true, stuck bedridden in a shared ward with “old people” in the local facility, a good one for most of its residents, but where the dementia unit is locked and its residents all but forgotten.

        So, nearing the end of this rave, I will fight alongside you and others to educate people about their entitlements, to get their choices implemented, to bolster others against the insidious bullying and half truths that they are fed by service providers, Centrelink and even some professional “dementia advisors”, and I can’t see myself ever stopping this “work”.

        It’s such a pity that so many people like you and me have had our working lives prematurely cut off. The cost of dementia care in the USA, despite the relatively recent introduction of Medicare there, far outstrips the cost of care for people with cancer or heart disease. That’s calculated using $20/hr as a baseline, which is the average hourly rate in the US for trained careworkers. The cute thing is that the total hours of care calculated (hours of care actually provided for people with dementia) are mostly hours “given” by untrained, self-educated at best care partners/relatives, many of whom have multiple other responsibilities in their lives. The sheer cost of forcing people to stop or downscale their paid work just astounds me.

        The reality is that we have to survive a tiered landscape, where profit and competition win over equity. No professional health or community care worker does 18+ hour shifts, 7 days a week. Would you trust yourself to their care if they did? I wouldn’t.

        For those of us without substantial private means, there is no other horizon than to fight every attempt at erosion of our limited entitlements, to be abreast and ahead of political policy change. To build from the ground up within our communities….and to outlast bastardry!

        Cheers doll. xx

  6. I too was impressed when I toured 3 of Tamar’s Group Homes on Sydney’s North Shore. I was actually applying for a job there. I stayed on after the interview and spent some time observing a typical day for residents. I never heard back from Tamar re my interview (which I found unprofessional) but I’m happy with my work now as a dementia care worker in private homes ( I enjoy helping clients maintain independence at home for as long as is possible & also get satisfaction from helping support families/ carers in their role).
    It is certainly important to note that it would be wonderful if everybody with dementia (indeed anybody who eventually requires residential care) could have the choice to live in the “Rolls Royce” scenario of care but unfortunately it is for many completely out of their financial reach. Sad but true. Group Homes is only for the well heeled. Its small number of residents per house and subsequent ratio of staff / resident along with the luxurious accommodation and lovely location means it inevitably carries a hefty price tag.
    What I would love to see but will never happen is for government to provide many similar group homes of this high standard.
    Australia has such along way to go before we can say we provide high quality residential care. I have been into many facilities & have yet to be impressed enough to say it is anywhere I would want to find myself or my loved ones in the future. Standards of care and staff to resident ratio is still well below acceptable.

    • Hi Amanda… thanks for sharing your thoughts here. My first comment would be, although I was no interviewed, I talk about their style of interviewing, and it sounds like nothing I have experienced, a novel way they find works. So I wonder if it seemed unprofessional, simply because it was not the way you have previously been interviewed? Yes, they do seem like the Rolls Royce of supported living, and for now probably only available to those with money. I feel though, as these types of HIGH QUALITY places spring up, the system will have to change. Like you, I had never, before Group Homes, seen a place I would want to live in. Together, we can make change, and by speaking out about what we see as poor care, and what we see as best care, we start to highlight the direction it needs to go.

      • Hi Kate, sorry I think my sentence re interview was ambiguous ( now that I re-read it) so my apologies. It certainly wasn’t the interview I found unprofessional, I have no problem with that (having interviewed many candidates myself in the past in my various roles & didnt find anything particularly different in the one I had with GHA). The unprofessional part was NEVER hearing back as to result of my interview. It’s basic business etiquette but sadly this is dying out it would seem.
        Anyway this has nothing to do with the quality of what is being offered in Group Homes Australia and I wholeheartedly agree with you Kate, wouldn’t it be wonderful if this type of residential care became the norm !

  7. Thank you for sharing this,this seems like an inspirational place,the sort of place,it would be an honor to work in be be able to help with care in a way that I imagine would allow staff to feel like they were able to provide care the way in the same way we would want to care for our own parents,rather than feeling like they needed to do better but were to time pressed to do,I hope these homes spread all over Australia and become the norm for Dementia residential care.

    • My feeling is, that as we find places like this, doing it so well, and the sector also working towards positive change even in the larger institutional settings, we will eventually find it is more the norm… Consumer Directed Care has made sure it will happen, as once the money for things like HACC packages are in the consumers pocket, and we can truly choose, just like shopping for a dress, we will buy the one we like if we can afford it!

  8. It is great to know that there are some great places out there. It’d be nice if one day we could work up a list of places like this around the world. Thanks for the post.

  9. personally I feel that in England we don’t make enough of the benefits of “very sheltered” or “extra care” housing where you are a tenant (at housing association rates) of your own flat at the staff & family visit at arranged times to provide care and are also on site in case of a crisis. there are communal areas but the home is the individual flat

    • I’m sure there are more (hope so), but this is the best I have yet seen in Oz… and I am so sorry to make you wince yesterday, I was starting on the required thinking for the article I have been asked to write, and started with worst case scenarios. xoxox

  10. How great this sounds Kate. Did you have an opportunity to look at bottom line costs – how does the financial cost compare to ‘regular’ homes? In my mind the ‘cost’ if comparing of quality of life could not be calculated. I visited Group Homes such as these in Sweden over ten years ago and was overwhelmed at the sense of calm and normalcy. It was, as you say, difficult to tell the staff from the people living there. This was their home for life if they wanted it to be, with staff ratio and expertise increased as needed. Some of these Homes even had internal staircases – no locked childproof barriers top and bottom – and no one had ever fallen down. All participated in household duties including cooking, washing, ironing, cleaning and shopping – if they wanted to.

    • Hi Wendy… I did not get down to discussing things like costs, but if I need care, quite frankly, I’d go there! So, I’d perhaps better get myself out of the S.K.I. Club (Spend the Kids Inheritance, just in case!!!!) It is something I will investigate when I have time though…

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