The hard, cold fact is that in our society children are apparently not “meant” to die: yet on average every day, in Southern California alone, a child dies of cancer or some other terminal disease, often dying in agony arising from our society’s obsession with cure over comfort, and often in the sterile environment of an Emergency Department or a Pediatric Intensive Care Unit. The lucky few who are able to spend their last days at home, often do so in poverty-stricken conditions, too often without their parents or immediate family because they have been deported, and in circumstances that are far from ideal for what any compassionate person might see as those likely to contribute to a “good death.” One in four child deaths in California each year is due to cancer, and despite over a hundred hospice organizations in Southern California serving the elderly population, there is only one children’s hospice organization and they only serve patients in their own homes. Whereas Medicare and Medi-Cal cover one hundred percent of all medical care costs for the end of life care of an elderly person, there is no such coverage for children’s end-of-life care since they do not qualify for either Medicare or Medi-Cal. Even the best health insurance will not cover anywhere close to all of the costs of end of life care of a child dying from a terminal disease: costs that can often run into the hundreds of thousands of dollars, particularly where extremely expensive experimental chemotherapy and other drugs are used to try to extend the life of a child with cancer, regardless of the quality of that life so extended. Metta Maria envisions a series of philanthropist-supported children’s hospice care facilities, each located adjacent to acute care hospitals treating children at end of life, with the goal of providing as “home like” environment as possible for each child’s final days or hours, all designed and run from a foundation of the Five Buddha Families, the Three Tenets, and core teachings of both Buddha and Christ on the nature of compassionate care for the dying.
…a personalised approach to leaving institutions Scottish Edition by Frances Brown and John Dalrymple. Published by the Centre for Welfare Reform in association with Citizen Network
‘… the difficulty of bringing people back home once they have been placed a long way away is so great that every effort should be made to avoid such placements.’ Mansell, 2007
That place of great difficulty is where this guide starts.
People with learning disabilities and challenging behaviour have continued to be placed in long-stay institutions, often a long way from home. New ‘placements’ of this kind have not always been avoided, and some people have not yet been afforded the opportunity to plan for their departure. Yet the urgency of the need to help people make their journey home is undiminished. They are not living in safe surroundings. Jim Mansell understood this too. When news of the scandal at Winterbourne View first broke, and some were assuming that it might reflect a problem specific to that particular institution, he was clear in his analysis:
‘The real solution… is to stop using these kinds of places altogether. Who will hold local health and social services to account to make that happen?’ Mansell, 2011
This travel guide demonstrates tried and trusted methods for navigating the difficult road home. (The guide demonstrating how to avoid that difficult journey in the first place is perhaps for another day, though its outline can be discerned from the principles and practices described here.) But it also affords all of us, as concerned citizens, a set of principles, ideas and practices we can use to hold each other to account in making sure these journeys are taken.
Whether you are slim or bigger (even if you are seemingly overweight, you can still be malnourished), it’s not good to lose weight without meaning to. It’s easy for weight to drop off without noticing. Significant, unintended weight loss makes you more likely to get ill or have a fall and can slow down your recovery from illness or surgery.
Whilst some signs may be obvious, others may not be as noticeable:
The RE-COV Studyfindings make essential reading on how the sector mobilised quickly to respond to COVID-19 related deaths in their schemes last year, especially when much of the spotlight was on the crisis in care homes at that time.
The overall lower than expected proportion of RE-COV survey participants’ residents who died from COVID-19 in comparison to people with the same age profile living in the general population in England.
The positive effects of the lengths that operators and staff took to help support residents’ activities of daily living, social engagement, community and personal activities.
Some of the measures adopted in Retirement Village and Extra Care Housing that operators felt were the most effective in protecting their residents and staff during the pandemic were found to be:
Closing communal facilities, suspending activities or restricting residents’ access to areas.
The issuing of full Personal Protective Equipment and its correct use.
Restricting and closing Retirement Villages and Extra Care Housing to visitors and family when necessary.
Regular and increased cleaning.
The design and external and internal layout of schemes, plus the self-contained nature of individual apartments, enabled residents to isolate and keep their distance
As a former residential child care worker of 35 continuous years and the Principal of a previous Approved School in the East Midlands region, I found the recent papers on Approved Schools and CHE’s interesting. I have been retired for 14 years, but I have kept myself up to date with current practice and philosophies through TCJ and other publications.
I want to make a few comments from my personal experience..…read in full at…
How can regulators & regulated organisations have more human relationships? …
Katie Rose and Andy Brogan, March 2021
…regulators are encouraged to ‘rate and rank’ providers, framing regulation as a score to be kept (and so inadvertently turning the regulation relationship into a game to be played). Within regulated organisations, their own internal performance management approaches will often reflect the same score keeping approach. In fact, these two systems (of external regulation and internal performance management) are so interwoven that it is all but impossible to effect an impactful change in one without the other.
Change therefore has to come from both sides. In order for anything to shift, regulators and regulated need to see themselves as parts of (i.e. partners in) a shared system…
How can regulators and regulated organisations have more human relationships?
How can we change the way inspections feel?
How can we experiment with evaluation?
How can we shape the narrative and language around regulation relationships together?
Registered managers and care home inspectors could benefit from working on this together. (Residential Forum comment)…Read in full at… there is a Community of Practice…
We are being forced to rethink the support and layer of care and crucially properties that sit underneath the care home market whether we like it or not.
The provision of care homes and services across the UK is not equal. The supply of care beds varies hugely across the country and does not always align with demand. Home ownership is in many cases higher in locations like the south where we have the lowest supply of care beds and in these locations, it typically aligns with the greatest challenges for staffing.
We know we need retirement communities and…….read in full…..
Calling older people names like ‘sweetie’ or ‘dear’ is quite common in aged care homes. But researchers have found that when aged care workers speak to older people as though they are children, it creates the perception of incompetence, and that can lead to a downward spiral.
What is ‘elderspeak’?
Elderspeak is the practice of speaking to older people as though they were children.
Kathy Evans piece from 2016 is pertinent to the many reviews that are underway regarding children’s social care. (Residential Forum comment)
In the course of my career I’ve observed five ‘paradigms of childhood misbehaviour’ – five distinct ways of conceptualising what is happening when children break the rules and boundaries we set for them (including breaking the law). Each of the paradigms leads to different beliefs about the right ways to respond, both in policy and in practice. In reality all five are widely deployed in very confused and conflicting ways right across our sectors.
All have implications for children’s homes and their purpose. Read in full at…….