As our clients approach their 18th birthday, it is vital that the case manager proactively prepares the client and their parents for the transition into adulthood and what this means for them as a family unit when decisions around the clients rehabilitation, activities and living arrangements occur.
When I start working with a paediatric client who is approaching teen years and adulthood, I see this as a fantastic opportunity to work closely with the MDT and Deputies/Trustees to ensure that we work collaboratively when setting out the necessary information at the right pace for the client with regards to post -18 decision making and engagement with the client. We are in a very fortunate position to work with the client across these transitional years. Early conversations, I believe, are necessary in preparing what is often a huge shift in the parent-client relationship. The positives of this transition are to remain at the focus of the conversation. Positive regard for our clients’ parents is always in the best interest of the client.
Case Managers often work with vulnerable clients who have sustained an acquired brain injury, and therefore the Mental Capacity Act is to be reflected upon when determining a client’s ability to make their own choices. We must always assume capacity, unless there is evidence to suggest otherwise.
The MCA says that a person with an Acquired Brain Injury is unable to make their own decision if they cannot do one or more of the following four things:
• understand information given to them
• retain that information long enough to be able to make the decision
• weigh up the information available to make the decision
• communicate their decision – this could be by talking, using sign language or even simple muscle movements such as blinking an eye or squeezing a hand.
The assessment must be made on the balance of probabilities – is it more likely than not that the person lacks capacity? We should be able to show in our records why you have come to a conclusion that capacity is lacking for the particular decision.
I have taken over a handful of cases in recent years where the client’s parents may disagree with the level of capacity the treating team feels the client has, to reassure the parents this usually results in having the decision specific capacity at question assessed formally. I often felt that if these matters started to be addressed from an earlier age (say, 15) and the family received training in the Mental Capacity Act routinely, would these concerns be less? The parents often are anxious about risk taking and levels of vulnerability their child has, because of their love for their child and past experiences of being the decision maker in all aspects of their life, which is something we all empathise with. I have taken on cases where the client is perhaps in their early 20s and the complexity of clients being at the forefront of decision making can result in a breakdown in communication amongst the client and their parents, causing extra stress for the client when they are often needing to focus on the direction of their own lives and independence.
My thought is, is there a better way we can prepare our clients and their families? How do we educate the whole network in the best possible way to ensure that extra stress is relieved and we can all move forward, with the client’s choices at the heart of what we are aiming towards? How can we make sure that across our industry, early and proactive conversations are the norm?
I welcome your views on the matter.
I passionately advocate for my clients wishes, with positive risk taking at play. As the saying goes, “what is the point in being kept safe if it merely makes you miserable?”
I invited an esteemed colleague, Tracey Daily, Director of Neuro Rehab Group, Speech and Language Therapist and Expert Witness, to add her views. Tracey states:
I was really interested to read Sophie’s thoughts regarding the transition to adulthood.
It made me reflect on my experience in the NHS when we also wrestled with this issue.
From the birth of their child, parents became the decision makers. They make decisions every day for their child, from the small decisions such as what to wear and what to have for dinner to decisions about where to live, where to go to school and medical care. Apart from in extraordinary circumstances, parents are generally doing their very best to act in what they believe is in the best interests of their child.
Then comes the eighteenth birthday – a time for celebration for many but for a lot of families we work with it is a time of anxiety perhaps, even fear, as their child is moving into a different system. Their parents have spent years learning to understand, and sometimes battle with, the system they are currently in.
Then comes the real crunch – not only is the system different but so is the law surrounding their child. Many times, I have worked with parents who are scared and anxious and even amazed when they are first met with the explanation – ‘your son/daughter is an adult now’. It is a strange and frightening thought that their child who they see as vulnerable, who they have loved and protected for 18 years, is suddenly considered an adult.
If their child is assessed to lack capacity to make a decision, other people now contribute to the decision-making process! It is even more frightening that other people, often professionals they have not had a chance to get to know and trust, start to tell them it is their son or daughter’s choice and that they have the ‘capacity’ to engage in behaviours or activities which the parents would not choose for their child.
I have too often seen conflict between families and professionals during the transition period. I think there are many reasons for this. Children with severe/profound learning disabilities do not enter the adult world in a gradual way. They do not challenge the authority of their parents and expand the world that they live in the way the way that other teenagers can. Their parents do not gradually adjust to allowing their child more freedom and accepting that their most important job is to get the child ready to fly the nest. Instead, there is an abrupt and sharp transition at the age of 18 and while the parents feel that their child has not changed in anyway the law suddenly views them very differently.
I could not agree more with Sophie that professionals need to proactively prepare the client and their parents for the transition into adulthood. It strikes me that case managers and independent therapists are in a unique and very well-placed position to support families through this process. Why? They offer a truly seamless service. In the NHS we were a paediatric service and an adult service, and I can honestly say that we as professionals at times did not fully understand the workings of each other’s service. So how difficult must it have been for the families we worked with!
Information and education for the family at an early stage is absolutely key, giving the family time to process, understand and question the new systems and laws. Empathetic professionals are also key, who understand the law well but equally understand the importance and value of family life.
You can learn more about the Neuro Rehab Group by visiting Neuro Rehab Group or contact Tracey via email at [email protected].
This has echoed so true in my experience as a Case Manager and is unfortunately treated as the ‘elephant in the room’ in so many family situations where the parents have already had to deal with usually life changing injuries to their child and changes to their lives also.
Parents regularly harbour some guilt in relation to what has happened to their child and this fuels their need to protect their child from anything else remotely risky or scary for them for years after. I strongly agree with the above comments that we as Case Managers have a unique and privileged position and as true advocates for our clients, we should not be shying away from asking these sometimes uncomfortable questions and having those awkward conversations as early as possible so the client, their parents and wider family are as prepared as possible for whatever changes are possible and inevitable. Failing to prepare is preparing to fail!
Reading this as a capacity assessor, it really resonated with me: we can always do more to prepare families for the process of capacity assessment, and I really like the idea of education for families and clients in preparation for a capacity assessment – although of course in acute situations this can be difficult! Explaining our decisions, and the rationale behind them, is of course critical.
I think it’s really important to prepare families for the ‘unwise decision’ i.e. if capacity regarding a decision is in question, and our client is assessed to have capacity and they go on to make a decision that parents feel is inappropriate, it is always going to be hard to counsel families that our clients have the right to make decisions they feel are ‘wrong’. In my practise I find it’s this that causes the majority of issues.
I think case managers and capacity assessors can play a more active role – it isn’t enough to just conduct an assessment – we need to be empathetic and ensure we communicate well with clients and families, giving them time to process decisions.
This has resonated so much with me. As an OT, I am often the one trying to support a client to achieve their goals…& as we all know, the goals of young adults aren’t always the same as the goals their parents have for them! For me, the parents and child should be being educated regarding capacity as early as possible- not just when they lock horns and a problem arises! Great blog, Sophie