I don't know how best to refer to "the people who might come to live in Deep Green", we could try an acronym but PWMCLDG doesn't really work eh?). A nurse has her/his patient, social workers and therapists have clients, commercial organisations have customers, and the term I absolutely abhor, that is commonly used by local authorities, "service user", or even worse, just "user". In my business plan I refer to "residents" - but obviously until it exists no one can reside there! The people I'm talking about are stakeholders, but then so are the potential staff, the local authority where it will be based, the neighbours, the funders and so on. I think I'll call them "potential greenies"!
Anyway I have been talking to some of "them", well strictly speaking, to some advocates and campaigners and some family/carers. I have not yet been able to access potential greenies who require me to have special communication skills. In some cases, no one has the appropriate skills, and there has yet to be some form of technology developed to assist. Therefore we are left making assumptions about what people might want. Clearly there are often disagreements between carers (family) and the adult services professionals, about what is in the "best interests" of the potential greenie, or over what it is a reasonable entitlement, which can lead to prolonged "battles" over many years, sometimes with recourse to the legal system.
There are a number of young adults for whom activities of daily living pose considerable challenges. This includes learning difficulties, coupled with physical problems (paralysis, skeletal abnormalities, spasticity, sensory impairment, inability to express themselves in manner comprehensible to those who do not know them, difficulties feeding and toileting. Some behaviours or movements may be involuntary, and can be considered "antisocial" by some. For instance shouting out loudly presents problems in many social settings. These challenges arise from congenital syndromes (i.e. that people were born with), or are acquired in early childhood, as a result of disease or injury. While still a child, the parents/ adoptive parents/foster parents have cared for them. Now that mature, there is a desire to move them on to as normal a life as possible, living in their own home, with some form of social interaction on a regular basis. In a number of these cases the potential greenie has 24/7 care, provided by 2 paid carers, or personal assistants. Some people have taken the option of directly employing their own staff through a "direct payment" budget from social services, and this can work quite well. Unfortunately I have yet to hear of a satisfied customer of the various agencies who provide home care staff, which have to be used if "health" is paying for the care. I have heard family say they cannot trust the carer organisation management to ensure that all care is provided to a high standard. One family said that the carers never took their charge out, despite him having a very expensive motorised wheelchair, and being well enough to go out. I heard of a case of a person's arm being broken by an inexperienced staff member forcing the arm into a shirt, not using the technique which was clearly explained in the care plan. I also heard the shocking case of a young woman being lowered into a scalding hot bath (non-intentionally) and dying some time later from burn-related complications. Even though "the state" is paying for care, the family members feel that they can never relax; that the care provided is not safe, and not as good as they would and had provided for many years. I have heard "I don't know what would happen if I wasn't here" said several times.
So we must create a safe and stimulating environment to engender trust, so that families can relax in the knowledge that their loved one will be well-looked after. I intend to assign each resident a member of staff (a nurse) to be their "special guardian" or "surrogate mother/daughter" - we'll have to come up with the right name - in other words one person to take responsibility to ensure that the care was as good as it would be for their own child or mother. This would be different to the staff on duty providing care during a normal shift. We'll have to work out the details with "stakeholders".
