There are times in our lives when we have to make important decisions and shape our future pathway through life. Choosing your first home as an adult is such a vast decision to make. You have to consider what part of the country it will be, a city or in a village, near the shops and leisure facilities or do you like a quiet life? These are common questions we all consider but having a learning disability adds some extra dimensions to the equation. They have to decide whether they will live with someone else or by themselves, who will be supporting them, who will be their keyworker and how they will spend their day.
This blog is about such decisions that a young man with learning disabilities had to make recently, how he was supported through this process and how the Mental Capacity Act (MCA) 2005 was applied. In the purpose of this blog a pseudonym and different characteristics were used to protect confidentiality.
Jacob is a 22 year old man who loves his dad, Charlton Athletic Football Club and the pop group S Club 7. He has lots of things that are important to him including playing X-Box, listening to music, going to the cinema, especially X-Men movies and spending time with friends. What’s important for Jacob includes supporting him when out in the community, helping him take his tablets and involving him when you are talking about him.
Previously Jacob had lived with his father but over recent years he gradually started to deteriorate, became withdrawn, had strange experiences and started hearing voices that weren’t there. He was seen by a Consultant Psychiatrist from the Community Learning Disability Team and after spending some time with Jacob, his father and looking at his history he came to the conclusion that Jacob was experiencing a first episode of psychosis. Initially he was prescribed some antipsychotic medication but these appeared not to work. About a year ago Jacob became extremely withdrawn, started to exhibit bizarre behaviour and attacked his father. He was admitted into hospital under a section of the Mental Health Act. As several antipsychotics had been tried without success he was started on clozapine. Within four weeks of starting clozapine there was a great change in Jacob. His father said that he ‘had got my son back, it’s like going back five years’ and Jacob said he felt ‘much happier now’.
His father stated that Jacob needed to become independent and live in supported living. So his social worker started to find a few options for Jacob. Jacob trusted his father’s choice in supported living and asked him if he will visit places before himself. Jacob’s dad didn’t like the feel of the first place but the next home really impressed him. So he talked about this home to Jacob who agreed to visit.
Mental Capacity Assessment
Stage 1 of the MCA - Is there an impairment of or disturbance in the functioning of a person’s mind or brain?
Yes Jacob has a learning disability, autism and schizophrenia.
Stage 2 of the MCA - Is the impairment or disturbance sufficient that the person lacks the capacity to make a particular decision?
There are four key points to stage 2 and the person has to pass all four elements of the test to have the capacity to make these decisions.
Does the individual understand the information relevant to the decision to be made?
Over a one week period Jacob was given information about the new home in a way he understands and in small amounts that he is able to process. Firstly he was given a few photos of the house before he visited and a one page profile of the staff member who will be there on the day. He was supported to prepare the sort of questions that are important to him. Then he visited the house with his father and nurse and met the new manager there. Jacob was shown around the house which he really liked. He asked lots of questions (some with prompting) like what activities he will be able to do, who helps with the cooking and can he bring his X-Box with him. The manager answered these questions satisfactorily and also provided some information about routines etc. He also met and had a conversation with the person he would be sharing the house with if he decided if he wanted to go ahead.
During the second week the question of control and supervision was discussed with Jacob several times and he was given information verbally and in pictorial format. As this was going to be a new home with support workers we talked about the average day there, what he will be doing, with how many staff and that the staff will be there for his support all day and night. We showed him pictures of the front door and emphasised that this will be unlocked. We then showed him the door of the inpatient unit (which is locked at all times) and he grasped the concept of the difference between the two doors.
Is the individual able to retain the information in relation to this decision?
Yes, over a period of two weeks this information was given to him and he was able to ask questions. He was able to retain this information every time.
Is the person able to use or weight the information as part of the process of making this decision?
From my experience this is the most likely part of the test that the person will fail if any. After meeting with Jacobs several times, offering the information in different formats I prepared a set of questions. Also I set a threshold of what I expected to hear from him if he had capacity. This doesn’t mean he needs to understand all the correct terms like medical language or what Deprivation of Liberty means. He needs to show his understand using simple language. For example if someone’s capacity was being assessed for a tooth extraction and used the term ‘tooth doctor’ instead of ‘dentist’, in my opinion he would still be showing understanding.
He was asked questions with the aid of a ‘talking mat’ approach. There were three columns on the mat with headings of ‘yes’, ‘no’ and ‘not sure’. Also to back up these questions asked, there were accompanying photos. Some examples of questions that Jacob was asked and how he answered:
What do you think of the new house?
Do you need support at this house?
What sort of things do you need support with?
‘Cooking and shopping’
The house will have one staff there all the time – what do you think about that?
Jacob then asked me a question ‘when I will be able to go out by myself’. I explained to him that staff want to make sure he has the skills to out by himself, like feeling safe when out, road safety, knowing his way back home and managing his money. He agreed to this and said he was happy with the support from the staff.
Then I concentrated on questions to do with ‘control and supervision’:
Do you remember Dr. Smith talking to you about Clozapine? (showed Jacob photos of Clozapine)
I just want to check if you remember why you take the medication?
‘To stay calm’
Does the medication ever make you feel sleepy?
Does the medication ever stop you from playing on the X-Box?
Does the medication ever stop you from going out in the community?
Are you happy to keep taking the medication?
You are in hospital at the moment. People are here to get better. The doors are locked all the time (showed pictures of the front door). Why are the doors locked?
‘To keep people safe’
At your new home the doors will not be locked. What will you do if you leave to go out?
‘I will tell the staff’
Why do we want the staff to be with you.
‘To support me’
I sometimes repeated a couple of questions but reversed the question to check the answers given and he still gave the same answers.
Is the person able to communicate their decision by any means?
Jacob answered all questions with plain English and said that he was happy to move into his new home and was pleased with the support he will be receiving.
Does he have the capacity to make this decision(s)?
On the balance of probability I was satisfied he has the capacity to make the decision of living in his new home and the level of control and supervision. But I recommended that the situation would need to revisit once he has lived there for a little while as he will be basing his answers on real life experiences.
A personal perspective
I had a stroke around two and a half years ago and my Trust was so supportive of me during this difficult time. When I returned back to work I had lost all my confidence and I had to adapt to some new limitations to what I can and can’t do. The first time on returning to the inpatient unit I took a deep breath and pressed the bell and they let me in. I had never met Jacob before but he came running up to me and said hello and asked me my name. He then had lots of questions, like ‘do you like X-Men’ or ‘what’s your favourite song by S-Club 7’. It was such a welcome to the unit and I really appreciated this.
Before having the stroke I had been teaching mental capacity since 2001 and I have also published about the topic and occasionally carrying out mental capacity assessments. I asked the team if I could undertake the assessment with Jacob and they agreed. With the teams support I realised I had retained knowledge of the Mental Capacity Act and how it is translated into practice.
I would like to thank Jacob for meeting me at the front door that day eighteen months ago. Both of us have come on in leaps and bounds since then. Jacob was discharged early this year and he had settled into his new home and everyone is really pleased with the progress he has made. This September he is becoming a full time student at a local college. I wish him all the best for the future and continue his journey through life.
Atlas House - Adult Learning Disability Service
Oxleas NHS Foundation Trust