Editorial comment: It is not my intent to cynically exploit a family tragedy to help me develop the argument for effective family support. But Mr Clarence, after the trial of his wife who had killed the three of their children who suffered from spinal muscular atrophy type 2, said that lessons need to be learned. I believe his plea needs to be heard – hence this article. Though this happened in England, the desperate plight and lessons from it are international.
I am not a collector of parent-kills-disabled-child stories and, anyway, not all of them achieve national or international press and media attention. But I can remember several news items during the last few years including one about a mother jumping off a bridge with her disabled child and another about a mother setting fire to her car with herself and disabled children in it. You will surely know of similar stories in your region. I assume I have seen only the tip of this iceberg – but it is enough.
There is surely another bigger iceberg here. My newspaper describes Mrs Clarence as depressed. It is my experience that beneath the cold, dark waters in which this iceberg floats lie tens of thousands of desperate parents who struggle daily against the odds but manage somehow not to kill themselves or their children.
In the families I have known, the child's disability, whether, for example, cerebral palsy, blindness or autism (or cerebral palsy and blindness and autism) is not necessarily the major factor in creating stress. It is much more often parents' surprise, disappointment, frustration, anger, desperation and despondency (often in this developing sequence) about the way support is delivered by local services or about the total absence of any relevant support from those services. This is too often what brings families to their knees.
How many mothers have you known who crawl in desperation to their GP (doctor in general practice) for help and are given antidepressants? The doctors are reaffirmed in their erroneous belief that disabled children are problematic and generally bad news and do not see the fault lying in the incompetence or inadequacy of local health, education or social care services.
The Clarence family write large the lesson we must learn. They give us the answer – unless we are stubbornly choosing to remain blind and deaf to it. Apparently the family's social worker, whom they had had since 2012 and who was an advocate for the family, was recently replaced by another who was inexperienced. I read into this a sudden and unwelcome loss of effective and essential support.
Whether this advocate, with the family since 2012, was a social worker, health visitor, nurse or charity worker is irrelevant to my argument. The point is that she had been with them long enough to form a relationship and was sufficiently informed and concerned to act as an advocate in the family's struggle with local services.
People who take on the role of keyworker for families of disabled children in any country must, to be effective, base their work in their relationship with parents and, as we all know from our own lives, this takes time, empathy and trust. These keyworkers are often told by parents that they are a life-saver, that the parent did not know what they would have done without this support, that the parent has been pulled back from thoughts of suicide.
I wonder how far the thoughts of suicide in a loving mother's mind are from thoughts of taking the disabled child or children with her?
The Clarence family bring back to the top of our minds something we have known for twenty or thirty years or more. People in need benefit from having a keyworker. Keyworkers provide emotional and empowering support, can advocate for the family and can pull support services together into an integrated, cohesive TAC (team around the child/citizen).
My fairly informal investigations over recent months suggest there are virtually no keyworkers for disabled children in England. Keyworking has been effectively killed off and is a victim of the same organisational incompetence and inadequacy that families too often experience in their local services. [Please see note (1) below.]
Still, we have to learn and we have to progress. Perhaps in this age of austerity (UK) we would be naïve to expect national or local government to start providing what desperate families need. Nor do I think the government has a will to do so. They are pushing us all towards the US stand-on-your-own-two-feet model in which there is no safety net for the majority of people who find themselves in difficult times.
I read this week that:
More than 10 million people will become carers for sick, elderly or disabled relatives over the next five years, according to new research. The charity Carers UK warned that people who started looking after someone for the first time can find themselves 'pushed to breaking point' if they do not receive help.
[See note (2) below.]
There is an emerging cataclysmic crisis in care for babies, children, teenagers, adults and elderly people in desperate situations and it is coming at the same time as ever-deepening austerity in many countries. Surely we must stop waiting for officialdom to make things better for us and start questioning how we could empower ourselves to help fill this massive gap of unmet need.
My best suggestion for a part of the answer is that we develop an additional model of support based in groups of people who get together to provide TAC Advocacy for local people in need. The term 'TAC Advocacy' is tentatively offered as a fresh start now that 'keyworking' is dead.
An example could be parents and others around a small clutch of schools getting together to provide ongoing TAC Advocacy for school leavers with autism and/or significant learning difficulties. This collective effort would mean that each parent does not have to fight alone and might come up with better alternatives than young adults being condemned to a lonely and empty life at home day after day.
Another example could be local people getting together to provide TAC Advocacy for local elderly people from their patch being admitted to a geriatric ward. This watchful eye would at least prevent them being starved or left lying in faeces – their own or someone else's. TAC Advocacy could also help them secure appropriate community provision once they no longer need to be on the ward.
The 'TAC Advocate' develops an empowering and emotionally supportive relationship with a person in need and can help them shout up for what they require, or shouts up for them when necessary. When a person requires support from more than one service or agency at the same time (e.g. from nurse, social worker and therapists) or requires carefully planned transitions from one service to another (e.g. between care home and geriatric ward in either direction), the TAC Advocate brings the services involved into a team effort working to an agreed single action plan.
The TAC Advocate role is a reframing of the multiagency keyworker role and is potentially an important and creative element of support for many tens of thousands of people in need regardless of their age, situation, condition or disability. TAC Advocacy could come from local services or from local people – people who have empowered themselves in pursuit of effective support for others who are having a difficult time. This TAC empowerment model forms a substantial part of Horizontal Teamwork in a Vertical World: Exploring interagency collaboration and people empowerment [See note (3) below.]
I acknowledge I have talked about mothers of disabled children and not fathers. Of course, everything I have said could apply equally to fathers – and to very many grandparents. I do not know the Clarence family but would like to finish this article by honouring Olivia, Ben and Max Clarence and paying all respect to Mr and Mrs Clarence and their daughter.
December 1st, 2014.
Dear Reader, do you have a better term than 'TAC Advocate'? Do you have examples of good practice or successful schemes? I want to develop this theme further during the next couple of months and I would greatly appreciate all information, support and ideas. Would you like to comment – in confidence?
1. There is more information on this here: Keyworker & keyworking. Have these words been done to death in England? Are you doing this essential work under another name? Do you hold the key? Does NCB? http://www.teamaroundthechild.com/allnews/commentopinion/1707-keyworker-a-keyworking-have-these-words-been-done-to-death-in-england-are-you-doing-this-essential-work-under-another-name-do-you-hold-the-key-does-ncb.html
3. Horizontal Teamwork in a Vertical World: Exploring interagency collaboration and people empowerment. By Peter Limbrick (2012). Available from Amazon and here: http://www.teamaroundthechild.com/bookshop/horizontal-teamwork-in-a-vertical-world.html
4. Two earlier articles on this empowerment theme are:
The 'Big Society', secular horizontality and, of course, Team Around the Child: