Inside Supported Living

Author: Melanie O'Neil

Mel O'Neil has been a great champion of inclusion and empowerment for her son Mark. After Mark left home Mel looked for a job in 'supported living.' Here she reflects on what she discovered supported living can mean in practice.

On my first day in my new job I shadowed a member of staff. I was told we were with a lady in her twenties who liked to be in her room shredding magazines and liked music and the Sheffield Steelers (an ice hockey team). We were also with a man was into lifts and trains. He doesn't use words. I told the manager of my interest in personalisation and that I was at the end of my regional Makaton training. The response was “We don't need Makaton here. You would be better used elsewhere.”

After spending some time with people and staff I was eventually allowed to do some cookery and, as one lady could not read, I adapted a couple of recipes into Makaton. Her response was encouraging - she went on to cook them! Another man I worked with had cerebral palsy and I later learned that he had used Makaton at school and did have some speech, but now doesn't sign and has stopped speaking - “due to getting older” - he was in his twenties!

I went to the shops with one person and a staff member. She was not given the opportunity to buy her own deodorant or a present for a friend and then was not given the chance to choose a sandwich for lunch. I found this difficult as my son is always able to choose. I did manage to get her to sample a couple of body sprays and she told me which she preferred. One man loved art and using wax crayons on a hard cover artists book. This was brilliant and he chose his colours independently. He also enjoyed playing the drums. He had a table top electronic set – we put them on a lower table and he was able to use them – he played for about an hour!

Letting people cook didn't go down well with the other staff due to "risk assessments." Was this the reason why people were being so restricted?

I went to a home that a number of ladies shared. “We do not want Makaton here! End of...!” So no signing, as it will “seize up their vocal chords.” I said: “I am really sorry but I have been signing for 18 years and sometimes I talk with my hands.” The staff laughed and said that it was OK. They warned me of a lady who was said to have dementia and they said that she scratched staff and smoked quite a lot. The staff asked if I smoked. I replied "No."  “We prefer if staff smoke” they said.

The following day I was asked to drive the organisation's car and support a customer who was on suicide watch. I had never met this lady before and was told to keep her out until about 2pm. “Go round the charity shops.” Not knowing what she was interested in or anything. I began chatting with her and learnt that she liked knitting and would like to knit something for a baby who was about to be born to her relative. She also liked art. Money was short and I paid for some items myself.

We went to the library and soon found that her boyfriend had not returned some books that she had taken out for him on her card. She got quite upset. This worried me as I didn't know what she was likely to do; but I managed to brush it off by saying sometimes it's easy to forget things especially library books. We returned to the home and we spoke to the house leader about what happened. I was shocked that the senior member of staff said that the woman's boyfriend was “a pain” and that she should dump him. She talked of it as a "safeguarding issue." This went further when I was sitting in the lounge with the woman and the locum mental health nurse came for the woman's review. The team leader spoke loudly to her and the other support staff about her views of the lady I was supporting. The nurse then came into the room and I asked the lady, “Would you like me to go or stay?” I said this was her choice. She asked me to stay. The nurse asked “How are you feeling and are you sleeping ok..... and the voices?” The customer replied that the medication was a big help and that she felt much better. The nurse went on to talk about the customer's relationship with her boyfriend and made it clear that she agreed with the house leader saying that she should put herself first and he should treat her better. The nurse looked at me for support but it didn't work, and she quickly knew I was there for the person.

I was so annoyed with the nurse and how the whole topic was handled that I mentioned that I am a community radio presenter and that my slot is called “Mel Personalised” as I am passionate about people having choices and control over their own lives.

Later the lady who has dementia scratched a member of staff and cut her face. I asked the member of staff if she was going to put antiseptic on it. She said it was OK. I was horrified that it was not documented or cleaned. I was really freaked out. As soon as the same lady said, “I want a fag” the staff followed her and joined her outside whilst others were in the lounge with me. So I set the lady up who wanted to knit and helped her to cast on stitches.

Then there was another lady who knew Makaton. I handed her my phone with a Makaton 'My Choice' app. She played on that. The other lady chose to watch a movie... the room was happy. But those out of the lounge didn't know what was going on.

After six weeks I was moved to another house. This was with two young women. One was very active and was a fan of Makaton. She decided that she was going to nominate herself to be my helper. She was currently at college. She had many interests and was always out and about and involved with her family. 

The other lady gave me concerns - her family had bought her wheelchair on eBay. Then she asked to play swing ball with me. I agreed and had a great game. Then she wanted to go out on her mountain bike. I asked, “Why have you got a wheelchair?” “Because I need one!” She returned to the wheelchair. I asked what would you like to do. "I would like to do animal care" so I said "Why don't you?" So I went on to get in touch with another organisation and got information. On my last day at this home the lady with the wheelchair was pushing her young relative aged about 4-5 years of age at speed around on the wheelchair in a small room. I felt that one of them was soon going to be injured. The staff member just looked on and said nothing, along with the family member.

The last house I went to again said “No Makaton here!” This time the member of staff said, ”These are my girls, I know them better than anyone and know if they're upset!” I met one lady as the other was away with family. After a number of weeks it was clear there was limited choice, so I devised a project to establish their individual interests. They were to decorate boxes to hold Christmas presents for family. They covered the boxes in brown paper and then they could put on them what ever they wanted jems, paint, stickers, etc. I discovered that they both like cats. One lady was very much into music and dancing so I asked if she would like to sample Zumba - she was already at a gym. We tried it and after half an hour and she was off talking to other members of the class.

The other lady loved wildlife so we paid a visit to a local community farm. She fed the animals and she later chose where she wanted to have lunch. This felt like progress, but then I discovered that one lady had no control over her choice of clothes or hairstyle. I was told she had no concept of money and therefore could not pay for things herself. She was reminded not to write love notes to her boyfriend as his family didn't like it. I asked, “But what about what they want?” “No, its got to stop!” The other lady was told that she was telephoning her boyfriend too much. Finally I met this boyfriend. He communicated quite a bit through Makaton and was actually telling her to ring him lots. I went on to tell him that I could sign and that I was watching him. For the lady this could be a tough position to be in - to choose the love of her life or the staff from where she lived and his staff.

Then if either of the customers were ill they still had to go to the centre as they didn't have the staff hours in the house. I was told “Don't tell the mum as she doesn't cope.”

The care plans have not been updated and a review had not taken place in all the time they had been at the property (14 years). I was told to just sign and date it by another support worker. I refused.

So to the training on personalisation. “You staff are all fantastic and you know the customers better than anyone even their families!” This I found very worrying both as a parent, but also as a professional. I was always told in training about the importance of working alongside families and having a positive relationship. I have had a couple of bumps with families, but it was about choice and control for the customer.

So I have handed in my notice and am back to square one! I thrive on seeing progress and independence. I have seen its benefits for my son and would have liked to have seen it for others. How would I feel if I had no control about what happened in my life? Going to the managers and telling them about my findings fell on deaf ears. I was told I had issues! I believe that choice and control is important as is the often repeated mantra “No conversation about us without us!”

The publisher is The Centre for Welfare Reform.

Inside Supported Living © Melanie O'Neil 2015.

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