When you need to know about the person, not the condition

An example of how a one-page profile can help empower a person with learning disabilities to be more assertive and assume greater control as well as helping raise their self-esteem.

Written by Sarah Macey

Mab’s one-page profile

Mabs is a 49 year-old woman with a mild learning disability. She used to live with her parents but after a short respite stay in a residential service Mabs blossomed and her parents agreed to a permanent move 22 years ago. Mabs certainly knows what she wants to do. She enjoys shopping, going to Indian or Chinese restaurants, buying magazines and having the odd glass of wine. Mabs did not have a one-page profile when she moved from her parents’ house as they always structured her routines and knew her preferences.  The staff team at her new home created a very clinical profile for Mabs which focused on her specific needs, medical data and activity preferences. In early 2011, parental influence on Mabs waned due to their declining health, allowing Mabs to be more assertive and to assume control over more aspects of her life. She developed a one-page profile with her keyworker to help with this. The keyworker was encouraged to concentrate on developing a positive description of Mabs without reference to her medical or support needs. Mabs found it difficult to use words to describe herself, other than saying she was ‘gorgeous’.  She did not have the same difficulty when describing others, however.  The keyworker prompted Mabs by asking her what her mother and sister thought of her.  When this approach seemed to work, the questions were extended to include what Mabs thought the staff members might say about her. A written profile was created with a central photograph surrounded with personality words.  The profile also contained a list of the things that are important ‘for’ (to stay safe and healthy) and ‘to’ (to be happy and empowered) Mabs, the latter being far longer. Mabs’ one-page profile has definitely improved the view she has of herself.  In the ‘what people like and admire about me’ section Mabs is described as happy, thoughtful, helpful, sociable, independent, assertive, clever – the list goes on! The profile has helped to raise her self-esteem and feeling of well-being. From a staff perspective, the one-page profile reaffirms the view of Mabs as a lovely character, without the distraction of her health, behaviour or support needs.

Living with dementia – Shirley loves to feel the rain on her face

A powerful example of how a one-page profile can empower people living with dementia to direct their own support. Shirley is now supported in a way that makes sense to her thanks to the deeper understanding people have about what is important to and for her.

Shirley’s one-page profile

Written by Narindra Devi and Gill Bailey

Shirley is 78 years old and a retired accountant living in Wolverhampton.  For the last five years Shirley has lived in a residential service supporting people living with dementia. Described as a strong character who is always kind and considerate, Shirley is very active and can rarely be found sitting down but prefers to be on the go, walking around and chatting to others.

As someone who has worked with numbers her whole life it isn’t surprising that Shirley still talks about and quotes numbers to people regularly. This is something that the staff who know Shirley well understand and are able to respond to. In the same way, the support staff who know Shirley well realise how important it is to enable her to freely move around and how she doesn’t like to sit still. Recently it became apparent that some staff didn’t know these important details about Shirley. She was being asked to sit down more which was causing her to be distressed and she was also getting upset when her support team didn’t converse with her about numbers and statistics; something that she loved to do.

Meeting together, the staff team realised that only a few of them knew what worked for Shirley and that they needed to find a way of sharing this information more widely so that everyone could support Shirley well. To do this they used a one-page profile. Together the team talked about all the things that were important to Shirley and what best support looked like. They shared what they like and admire about Shirley and these appreciations were all captured on her one-page profile.

The profile communicates vital information about how to support Shirley well. All staff must be aware never to try and make Shirley sit down as this would lead to her becoming very distressed and could lead to her harming herself or others. They also learnt that when giving Shirley medication they should wait for her to pass and never chase after her as this would create great distress and anxiety for Shirley. Another rich insight that is shared on Shirley’s profile is her dislike of people touching or talking about her feet. Making staff aware of this means they can avoid upsetting Shirley unintentionally.

Shirley now has more control over how she lives because the people who support her understand what is important to her. She now goes for walks outdoors as much as possible. Previously staff would have shied away from supporting her outside if it was raining but they now understand how important this time is for her and acknowledge that going out for a short time in a little rain won’t cause Shirley any harm and actually she appears to love to feel the rain on her face if her huge smile is anything to go by!!

Even new staff can get to know Shirley well and quickly by looking at her one-page profile.

Shirley is much more relaxed and content since developing her one-page profile. It is my belief that if we are to truly personalise support for people living with dementia, we have to support a way of living which makes sense to the person as well as ensuring they stay healthy, safe and well. This has been achieved for Shirley.

For more details on Gill Bailey and Helen Sanderson’s book; Personalisation and Dementia please visit Jessica Kingsley Publishers.

Big life changes from good conversations

An excellent example of how a one-page profile can build confidence and self esteem; getting people to think about what is important in their life and the contribution they make to others. Ken’s story is a powerful reminder of how person-centred thinking can lead to big life changes.

Ken’s one-page profile

Written by Ruth Hamm

Ken is a 71 year old man who has struggled with addictions in the past. Ken had lived in shelters or “couch surfed” for the past four years before he entered the Housing First program. I am his Case Manager.

Ken has two children and three grandchildren that have been present in his life throughout his homeless years, however the connection has not always been healthy or productive whilst he was frequently moving around.

Early on in working to support Ken in attaining and maintaining housing I noticed that he seemed to have a very negative view of himself and any contribution he brought to his family or this world. He felt that others should just live their lives as they wished and not concern or burden themselves with things that may matter to him. He brushed off the question “what is important to you?” saying that he was easy going and “it just didn’t matter”.

I was curious and wanted to get to know Ken better and help him see the kind, giving and gentle man that I saw when I spent time with him.

Ken and I worked through his one-page profile together over a few visits. We started by one day working on the positive/negative reputation exercise. In the time I had spent with Ken he had frequently stated his faults, however he shied away from speaking about things that he was good at. I had him list things that he felt people might say were negative about him. After he had listed several “negative reputation” characteristics, we went to work at looking at how each characteristic had a very positive attribute. I also added the things that I like and admire about Ken from the time we had spent together.

Over the course of a few more discussions I was able to draw things out in conversation that Ken would speak about more than once. I was then able to ask him if he found that particular thing important to him. He was surprised to discover that there were things that really mattered to him and were important to him.

When the one-page profile was completed, I presented it to Ken and asked him if he felt it accurately represented him. He was shy upon reading the “like & admire” section, however he said that it was all accurate and seemed to be proud of it.  Ken posted the one-page profile on his fridge, and during a later visit to his home, he stated that his daughter had read it and thought it was a great idea.

The one-page profile showed Ken that he truly was worthy and valuable to his family. Since having been supported in finding housing and working through several person-centered tools, Ken has reconnected with a few of his family members and he has been able to set some healthy boundaries where needed.  Ken is able to have his daughter over to his new home for coffee several times a week and he states that he is treasuring this renewed relationship with her.

Since his housing, and learning about what is “important to” him, Ken has opened himself up to various other opportunities such as taking a community course to learn how to use a computer, the internet and email. Ken also speaks of going out for coffee to the Legion to meet with “other old guys” as he calls them.

From my perspective, Ken has displayed a more positive outlook on life as well as a healthier self-esteem and self-image. He is much more willing to step out and try new things and meet new people. The amount of time he spends alone in his home is reduced and he enjoys having people around him.

Ken’s one-page profile was very beneficial in bringing Ken out of his shell and showing him how valuable he is to his children and grandchildren. Ken certainly has become a bit more outgoing and engages with those around him willingly and in a positive and healthy manner.

A different way to use a one-page profile

An excellent example of how a one-page profile can be adapted to create a professional résumé. Joey recognised the value in the rich information that a one-page profile captures and used it to present himself to potential employers.

Joey’s one-page profile for job hunting

Written by Julie Malette

When Joey developed his first résumé, he was a 15 year old grade nine student living in Sturgeon Falls Ontario.  He was interested in finding after-school and weekend work.

Joey had previously gone to a few local businesses to apply for work and had not heard back from any of them.  His mom suggested that he create a résumé that included the ‘Like and Admire’ and the ‘Important to Me’ sections that feature on a one-page profile.

Joey used the Like and Admire information from a previous family activity, calling his grandmother to explain what he was doing and asking her what she liked and admired about him.  Joey and his mom also talked about what was important to him and wrote this down.  They debated whether or not he should include a picture on his résumé.  They thought that it was likely to get people’s attention but is not usually part of a work résumé.

Joey decided to add his school picture to his résumé.  He then printed some coloured copies and went to local businesses to apply for work.  One employer told him that he had never seen a picture on a résumé and liked it.  He said that although he was not hiring at that time, he would remember his meeting Joey and their conversation and would call him if they had any openings in the future.

Using sections of the one-page profile in the résumé made it stand out from the rest.  Identifying what people like and admire about the person sends a much stronger statement than simply listing strengths and skills.

Joey did get hired to work part-time at a local coffee and doughnut shop.  He learned much from this work experience and has realised that working in the food industry is not what he imagined it would be.  He is now in grade 12 and looking for admin and self-directed types of employment opportunities.  He is also focusing on his schoolwork in an effort to get University scholarships.

Making familylife run a little more smoothly

An example of how a one-page profile can be used in the home to help families communicate and support each other better. 

Written by Julie Malette

Barb is a mother of three and a single parent during the week. Her husband comes home on weekends, which changes the dynamics of the home significantly. He also has four children who visit  frequently. Barb has two jobs as well as community commitments.

Barb was feeling quite overwhelmed at home. She had recently been given a medical diagnosis that she felt her family were leaning on when she was frustrated or tired. She was feeling like she was the person that was expected to ensure the home was just as everyone wanted it…like superwoman would. Although she appreciated being valued in this role and wished she could do that, it was just getting to be too much for her to balance so she created a Mom and Wife one-page profile.

She sat down one afternoon and created the profile on her own. She took an appreciation activity they had done as a family in the past and used it to develop the Like and Admire section of her wife and mom profile. Barb printed it and shared it with all of her children and her husband. She then stuck it to the refrigerator with a magnet so it would not be forgotten.

When her children first read it they mentioned that some of it they already knew and some of it was a surprise. Her youngest son started asking before cuddling up to her on the couch. Dishes and meals were more often taken care of by others. Barb began experiencing less resistance from her children to do their chores. Her diagnosis is never used as an excuse anymore, instead her family asks if it is a bad day medically or just a rough day in general. A few times, her children have made her a nice Jacuzzi while she is out on her daily walk; when she returns it is prepared for her. Overall, the profile has really helped everyone understand that Barb is not a machine and they have more respect for her needs. Gentle reminders sometimes need to be given but for the most part it has helped make home life go much more smoothly.

The history of one-page profiles

Written by Helen Sanderson

Laura’s one-page profile

My daughter, Laura, had the first one-page profile when she was six, nine years ago. She had been in Year 2, for three weeks, when she came home one day in tears, saying the teacher had told her off for wearing the wrong trousers in PE.

When we went to see Laura’s teacher, she explained that she had not told Laura off, but had pointed out that if she only had shorts, and not jogging bottoms, then her legs would get cold. She also said that she had not really been able to get to know Laura, as she is quiet in class.

We decided that we needed to help the teacher to learn more about Laura – and quickly. At that time I was the Department of Health’s expert advisor in person-centred planning, and I knew this could be a helpful approach, but I also knew that teachers would not have the time to read the detailed plans we were using. So, I created a one-page version for Laura – a one-page profile. At first we called it a one-page plan, but quickly realised that was wrong, as all plans should have actions. Instead, this was a person-centred summary, a profile, of who Laura is and how to support her.

The first part of a one-page profile is an appreciation – what people like or admire about the child. We involved Laura’s extended family in contributing to this. It was lovely for Laura to hear what her family likes and admires about her. Then, over a hot chocolate in a cafe, Laura and I thought about what was important to her – her yellow Teddy Sunny who slept on her bed, her three cats, the stick insects and wondering if their eggs would hatch; and what we know as her parents about the best ways to help and supporter her – recognising that she finds change difficult and needs lots of reassurance, and that she can perceive a small negative comment as a big telling off.  Laura drew a picture of herself for the background of the profile and we made an appointment to share it with her teacher.

‘This would have been very useful to have had at the beginning of the year’, she said. She talked about how helpful this information would be at some of the important transition times, like children coming from nursery into school, and moving from class to class.

Laura’s one-page profile helped her move from class to class. Each year we updated it with Laura, and her teacher and Laura drew a new picture or chose a photo of herself.

Fast-forward now to 2013 when, at the same school, Norris Bank, every child has a one-page profile. Back when Laura was six, and I was nervously sharing her first one-page profile with her teacher, I would not have believed that we would now be sharing the journeys of 100 other people – all using profiles for better empowerment, choice and control in a variety of situations. It really excites me to think what could be possible if more people knew about and had access to this simple but incredibly effective tool!