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In the best interest – can we challenge the parent advocate?
For adults with learning disabilities who cannot speak up for themselves, there needs to be a means of ensuring that their wishes and views are heard. This is increasingly difficult when we try to separate the real interests of the individual and those of the people providing them with care and support. It may sound odd, but the carers do not necessarily have the real interests of the individual in mind when they make decisions for them.
This applies in residential care settings where sometimes the needs of the many override the choices of the few. An example might be someone who likes to play loud music being restricted in doing so as it causes upset to fellow residents. One chap I recall in a care setting was apt to wander about at night stark naked, but we had to ask him to desist as the people sharing his house found it upsetting. Yes, we were curtailing his freedom; yes, we were supporting those who were affected by his choices.
What is advocacy?
Advocacy is a tricky thing. The definition generally is that advocacy is the means of enabling someone to have their voice heard, to have choices about their lives and to have their rights as an independent citizen. It provides the opportunity for people to have control over their lives. By this definition, advocacy should be fully in the interest of that individual. This suggests that, if providing an advocacy service to someone, there must be no bias on the part of the advocate. Even if the client makes a choice that the advocate disagrees with, it is still their choice and they have the right to make it.
So, where a young adult enters adult services, is it appropriate for their parent to remain as advocate for them?
Here’s the story...
Mark is a young man in a residential service who has a learning disability and autism. He is pretty independent, able to live in a group setting but with his own small flat and the support of a warden. In the day he attends a work placement with a small team of support carers.
Mark is an only child and his mother is a widow. Up until he joined the adult service, Mark was at a residential special school some distance from his home, but his mother visited occasionally and he went home for most of the holidays. In school, Mark enjoyed a reasonable amount of independence and freedom, having a circle of friends and a good knowledge of the town he was in.
When Mark moved back to his home town, his mother became much more active in his world. She declared herself to be his advocate, was highly influential in the choice of housing, and helped recruit his day support team. So far, so good. Mark had her help in choosing his furnishings, and she would be around most days to ensure he shopped wisely and ate well.
Over the last year, however, Mark has been erratic in attending his day activity. Sometimes, the support workers will arrive to meet him and find he will not leave his room. He has become withdrawn, nervous and has occasional bouts of self-injury. This seems to have coincided with the declining mental health of his mother, now in her seventies. Mother has begun to exert more influence over Mark, not just in terms of supporting his life, but in guiding his choices in ways that the support team are concerned about. They feel strongly that Mark is making choices to please his mother, rather than choose his own path.
In addition, Mother has started to challenge the support team directly, accusing them of being incompetent, arriving too late or not at all, hinting that they are not acting in Mark’s best interests. This has recently become more worrying as some of her comments suggest Mark may be at risk of abuse, although there is no evidence to support these claims. The team has found this highly stressful and some are not able to work under these circumstances.
What to do?
For the service manager, this presents a dilemma. Evidence shows that Mark has deteriorated in terms of his mood and behaviour. He has become less socially active and is at risk of losing his placement due to non-attendance. In situations where his mother is not around, Mark is clearly happy to participate in the planned activity, without any need to persuade him. Only when his mother is on the scene does he refuse to attend.
Now, given the story above, you might think that Mark’s mother is the problem here and that he needs to be enabled to self-advocate to ensure his rights are upheld. On the surface of it, this could be the right decision. After all, there has been a distinct, if gradual, change in how Mark’s mother is behaving.
But is it really Mark’s mother who is actively influencing Mark’s choices? Is she causing him to have doubts about his support through her comments? In exploring the issue as a team, lots of people had differing views. Some felt strongly that Mark’s mother was pursuing her own agenda in her behaviour; she wanted to have Mark spend more time with her and believed this was in his best interest. They felt Mark was being restricted and that this was wrong.
Others questioned this approach; they felt that it was Mark himself that was adapting his behaviour in line with the declining capacity of his mother. They felt that he was choosing to be near her as he was concerned about her getting older and being frail and vulnerable. His way of expressing this choice was through refusal to attend independent activity. This was not subtle, but Mark was not able to convey these feelings easily to support staff due to his learning disability.
So how do we decide who is right and who is wrong? It’s fair to say that all involved have an agenda of some kind. The staff who feel mother is a bad influence may have their own experiences to support this view. Those who believe Mark is making his own informed choices have been accused of siding with Mother. Mother herself may well be frightened of being alone, or be seeking to regain the child who has been growing away from her as he becomes an adult.
There is, of course, no one answer, save the one that enables Mark to advocate for himself in a framework of being informed and supported by a completely unbiased agent. The service manager has been active in contacting a local advocacy service which can work with Mark on helping him express his feelings and fears, so that he can come to terms with what is happening and decide how he wants to proceed. The self-advocacy scheme has given him the information he needs to help him choose, and has shown him that there are many options available to him.
If this example resonates with you, and you are struggling with parents who seem overbearing, or staff who appear to be pursuing their own agenda, there are several organisations and publications that can offer advice.
Ginny Tyler – QCS Learning Disability Expert Contributor