Starting with your best foot forward

A wonderful example of how this boy’s one-page profile communicates all the things he can do, loves to do and that are important to him. Freddie’s mum felt that before using the one-page profile she’d be introducing her son with a long list of things that he struggles with. Now she has the perfect way of introducing him as the kind, brave, caring, giggly and perseverant boy that he is.

Freddie's one-page profile

Freddie’s one-page profile

Written By Freddie’s mum Tracee

When my son Freddie first started school, I hadn’t heard about one-page profiles. And so I made a list of everything I thought his new school might need to know as Freddie has Down’s Syndrome and sometimes needs a little extra help to go about his day in the best possible way.  Reading the list out loud, compiled mostly of things he struggles to achieve, to the assembled faculty was fairly depressing – and not just for me I imagine!

When I created Freddie’s first one-page profile I didn’t know too much about them, except that I liked the concept. And though it was a step forward, it wasn’t as balanced as it could be and crossed into what our family needed instead of focusing solely on Freddie’s needs. I’ve since had access to a book and workshop on the subject and now we include the people in Freddies life and as much as possible, Freddie himself, in compiling new versions and we update it every year.

We use the profile whenever Freddie starts a new class, goes to summer camp or joins a new club. Even summer camps he has attended in previous years appreciate an update on where Freddie is in life at that time.

When we hand out Freddie’s profile, we know we are giving Freddie the best possible chance of success in a new setting. Not just for him, but also for the person charged with caring for him. And in our family, successful days usually equal very happy days.

We’ve had very positive feedback from camp orgnanisers, who look forward to meeting this smiling boy who loves to read and run and jump outside. They like that they can quickly understand how best to support him and who of their team is best placed to provide that support.

Importantly the profile focuses as much on what Freddie can do and likes to do as it does what he needs support with. I feel this means he isn’t underestimated when he goes somewhere new. It means someone has information to build the foundations of friendship on and can suggest activities they can do together that he will like.

At school, when we presented the profile to the new class teacher she took it to the Head, who could immediately see how useful this simple person-centred thinking tool could be and said she was going to recommend that all children with special needs in the school had one.

Freddie’s younger sister Eden doesn’t have special needs. But when Eden starts school, I’ll be providing her teacher with a profile all the same as I want her to have the same opportunities for success as her brother. I can see the benefit in all children having one-page profiles in school and this is something I would love to happen.

I worry less about Freddie starting something new. Everyone involved gets the opportunity to start with their best foot forward and that can only be a positive thing.

We’re due to update the profile in the summer and as Freddie is that bit older (he is six now) I’m looking forward to including him a little bit more and recognising how much he has grown during the year.

When you are new to a team: One-page profiles at work

An example of how this apprentice used her one-page profile to help her get the most out of her placement, communicating what support she needed and helping her team get to know her well and quickly.

Mollie's one-page profile

Mollie’s one-page profile

Written by May Lee

Mollie is an apprentice working with a team supporting people with profound and multiple learning disabilities. She had no experience of working with people with learning disabilities prior to beginning her work as an apprentice. Upon starting she immediately showed signs of enthusiasm and a willingness to learn as well as great communication skills. Mollie also attends college one day a week.

Mollie was supported to develop a one-page profile in order to develop her relationships with the new team she was coming into and help us understand what her learning and development needs were so that she could get the most out of her placement with us.

I explained the concept to Mollie who completed a first draft and we went through it together to develop it further. This was then shared with the rest of the support team working alongside Mollie so that everyone could understand how best to support her and make sure we all worked together.

Having the one-page profile has enabled Mollie to do more of what’s important to her. She went on an Intensive Interaction course which meant she was able to develop her relationships further with the people we support. She was then able to feedback not only to the team she was working with but also to other people at the forum. As a result of this she has attended several services team meetings to talk about Intensive Interaction.

The process of developing the profile helped us to understand Mollie better, but also gave Mollie the opportunity to reflect on what she wanted and allowed her to say what she wanted others to do in order to make the most out of her placement. One of the things Mollie said was to give her regular feedback on how she’s doing so that she can keep learning – we make sure we do this at least once a month so we keep it on the agenda.

It has been great watching Mollie grow and develop and I am confident that her one-page profile has empowered her during her apprenticeship with us.

One-Page profiles; ‘How things are done at Dimensions’

Written by Dimensions UK Chief Executive, Steve Scown

Steve Scown

Steve Scown

As someone who believes firmly in leading by example, I developed my one-page profile some time ago and asked my colleagues to help me. By engaging with them in this way I had to think more deeply than I had before about what I needed from the people around me and about what was really important for me, as opposed to a long nice-to-have list.

At Dimensions we have been working towards becoming a more person-centred organisation for a number of years. As one of the leading not-for-profit providers of care and support services, we have recognised the responsibility upon us not to only provide person centred services for the people with learning disabilities and autism we support, but also to share our learning across our sector and other industries. One-page profiles have proved to be an incredibly powerful tool in helping us fulfil both of these aspirations.

My own introduction to one page profiles came as a result of our work with Helen Sanderson Associates and their potential use across many aspects of our business was soon evident.

After I had completed my profile, it was posted on our website  along with profiles for our executive team and members of our board.  I have been struck by the number of companies who have remarked how useful these were in helping them understand how to engage more effectively with us as individuals and as a company. Recently a team of legal advisors bidding for our contract came along to the interview with their own one page profiles as a result of seeing ours on our website.

We have since this initial phase begun to use them right across the business as well as embedding them as a critical tool in how we support people. In short they have become recognisable as part of ‘how things are done in Dimensions’.

In our services they have enabled us to link people with similar interests. After all when being helped to bake a cake, it’s a much nicer to be supported by someone who loves cooking and baking as opposed to someone like me who regularly burns toast and whose passion is rugby.

In addition to their use in services we have more recently strived to get one-page profiles embedded in our business support departments. Visitors to our offices will find a file with the profiles of people who work in that office – this has helped people break the ice when meeting someone for the first time. Attaching links to profiles on our e-mail footers has also helped remotely based staff feel more conformable phoning people they haven’t met who work in our centrally based teams rather sending the usual e-mail query. Many of our business support teams have developed team profiles to help others understand ‘what makes them tick’.

As with most things that require a change in behaviour (individual or corporate) and which brings about material benefits it hasn’t all been smooth sailing. Some people have had concerns re sharing personal information. I think the key here has been to help people remember they are in control of the information they share and that the aim is to help people connect more easily with them. In such busy times it’s also easy to see these as a task that once it’s done is done. Our learning has been that they are more effective when they are alive and are updated as we grow and develop as individuals as opposed to something you create once and file away.

I think the introduction and embedding of one page profiles has made a really positive impact upon how we work and our organisational culture . But, I don’t think we’ve finished yet – looking ahead we will continue to think and develop new ways of using them. Already we’re thinking of how we could embed them as a key part of our recruitment process and I can see us asking families to complete a profile so our staff can better understand what is important for them and how we can better connect.

So if you’ve got any ideas on how we can use them or would like to know more about our journey please feel free to leave a comment on this blog or contact us directly.

 

When homelife changes – Finding a new path

This family were struggling under the pressures of a divorce, a pending move, arguments and stressful exams. They needed support to rebuild their confidence, listen and hear each other well. An example of how one-page profiles can be used to support families experiencing divorce.

Yasmin's one-page profile

Yasmin’s one-page profile

Written by Sue Atkins, Parenting Expert

Yasmin worked for a University as a PA. She came to me because her home-life was changing dramatically. Her teenage kids were suffering from arguments as they were both studying for important exams. She had a comfortable lifestyle but was going through an acrimonious divorce and was transfixed with fear about losing her home and how she was going to cope with all the changes that lay ahead.

Yasmin wanted support to rebuild her confidence, determine her new path in life and form ideas about how to handle her husband’s furious outbursts in front of the children during the divorcing process.

Yasmin had found out that her husband, a doctor, was having an affair with a younger nurse at the hospital. He suffers from OCD himself and the unhappy atmosphere in the house was unbearable as her husband initially refused to move out despite his affair. This family lived in Birmingham and the daughter was studying for her A Levels whilst the younger brother was studying for his GCSE’s during this traumatic, stressful time. Things were so difficult that Yasmin’s daughter started suffering from alopecia.

Yasmin and I had three, one-hour secession over the phone where we created her one-page profile with the aim of giving her clarity, direction and empowerment. Then I coached each child for an hour over the phone to help them in creating theirs. I always start with parents when creating one-page profiles with a family. It is so important that mum gets her confidence back and feels able to express herself, identifying what is important and what support she needs first in order to be able to support her children.

Whilst creating the one-page profiles we had good conversations about what was working and not working. This was the most powerful part of the process for the children who both finally felt heard and could be supported in the way they wanted to be supported.

The process of healing and forgiveness began and the kids bonded more with their Mum. She in turn gained in confidence and they TALKED more and looked at solutions not just difficulties.

I heard recently Yasmin and the kids were in Time Square celebrating Yasmin’s 50th birthday – they had moved into rented accommodation and were slowly putting back the pieces to their lives. We still do Working/ Not Working every 2 months during the transition then I do what I call “Wriggle Room” where they call me when they need me or get a bit stuck. It’s a powerful empowering process.

One-page profiles in hospitals – Something to shout about!

By Julie Malette, HSA Canada

Julie Malette

Julie Malette

Our work in health care settings is fairly new in Canada.  In November, I worked with the North Bay General Hospital’s Mental Health team and I am quite excited about the direction they are taking in terms of listening to the patient voice and focusing on being more person-centred.  We spent two days focusing on person-centred thinking and one day on person-centred reviews.

The hospital’s mental health department is currently transitioning from traditional multi-disciplinary team meetings where the focus is often on clinical goals and meetings are lengthy, to what they call the ‘One Patient One Plan’ approach where mini-team meetings occur weekly with a core team of supports and focus on the patient’s priority goals.  We will be working together to look at how person-centred thinking skills/tools can be helpful with this approach.

Soon, I will also be spending time with key leaders from both the mental health and the medicine departments of the hospital to support them to develop their one-page profiles.  The hospital would like to start with its leaders who will then support their staff in developing their own one-page profiles.  This is a very important step. One-page profiles in hospitals could totally revolutionize the way patients and staff are supported. It means that healthcare workers will be supported to understand the person, not just the condition and that patients will be able to communicate what is important to them and how best to support them. Starting from within means we can really embed the concept of using one-page profiles deep within the culture of the hospital and this will give it the commitment it needs to grow and be used well by both staff and patients.

Our colleagues in the UK have already introduced one-page profiles into two hospitals and their recent pledge for NHSChangeDay (to support patients and colleagues working and using health services throughout England to create one-page profiles) has significantly raised the profile of what this could achieve in health. Nurses, Hospital Chaplains, Patients, Therapists, GPs and Hospital CEOs are mobilizing to have their own one-page profiles in support of the pledge. I’d love to see something like this happen in Canada.

I’ll keep you updated on how our own health one-page profiles are progressing and leave you with these thoughts: Imagine you were in hospital and your healthcare team really got and understood you as a person. Now imagine you are a health professional and because of a simple, easy to read sheet of paper you had all the information at your finger tips to make someone feel understood, well cared for and well supported when treating them. This is what one-page profiles in health could help us to achieve. To my UK colleagues – I wish you every success in your pledge. To my Canadian friends – what about doing something similar here?!

 

A view of the world from a different perspective

Philip's one-page profile

Philip’s one-page profile

An excellent example of how one-page profiles can empower people to achieve their goals. Philip is Autistic and has his own unique perspective on life. With the help of his one-page profile he has been able to do things that had previously worried him and is one step closer to fulfilling his life ambition; being famous!

Written by Suzanne

Philip is 26 years old. He is very witty, chatty and his biggest goal in life is to be famous! Philip is very likeable and he has an army of supporters and admirers. He makes a lasting impression on everyone he meets.

Part of his fantastic character is the fact Philip has Autistic Spectrum Disorder. His view of the world is very different to a lot of people. Philip has helped us appreciate the diversity of looking at and interpreting the world. There is no correct way to perceive our environment however, there are many ways to see the same thing and each of them may be correct if seen from the right perspective. This is what Philip does; he gives us his perspective of how he sees life.

In 2012 one of Philips greatest personal achievements was going to the Supermarket. This took a lot of planning with Philip who initiated the trip by saying that he wanted to go shopping and that if we got him a wheelchair he would go. The wheelchair makes him feel safe even though he has no physical disabilities; Philip is terrified of strangers, people and community life.

We researched several Supermarkets and approached them with Philip’s consent explaining the situation, discussing different types of wheelchairs they provide and the best times to access them. Sainsbury’s at Bishop Aukland were very helpful. We took Philip and checked out different wheelchair options. We also gave Sainsbury’s Philips one-page profile with his consent. His profile has all the important information about Philip, what is important to him, what people like and admire about him and how best to support him. This helped people at Sainsbury’s get a picture of Philip before meeting him so they had a good understanding of who he is. They all read and appreciated the information and I believe it helped them gain a deeper understanding before meeting Philip in person which undoubtedly improved his experience.

Philip goes shopping now every Tuesday. He has had his picture in the Northern Echo and a story about this achievement. He is more comfortable around people and has built a circle of friends from staff who work there. We also used the one-page profile when Philip wanted to go Horse riding. It is a good “ice Breaker” and Philip loves the fact that people know him before he has met them and it makes him less anxious. He is trying new things now and feels more confident that “the world is ready for Him”

Before producing his one-page profile, Philip only went to the moors or places where there are very few people. I can safely say that it has changed his life and he is more involved and having more new experiences than ever before.

Is this care you would be happy with?

It started with a person-centred thinking course attended by Sue, the care home manager and now Sam, the people he lives with and the people who support them are on a life-changing journey. An example of how this man’s one-page profile has led to him reigniting old relationships and hobbies; making him feel like he has a purpose again. 

Sam's one-page profile

Sam’s one-page profile

Written by Gill Bailey

Sam is 78 and lives in a residential care home supporting older people on the Fylde Coast.

The manager, Sue, went on a person-centred thinking course and decided that things in the care home should and could change. She knew this required a huge shift in culture. This shift began with uniforms no-longer being worn, to create a more ‘family feel’ and a no ‘them and us’ culture. Toilets became communal – so there were no separate staff toilets, no staff mugs and sitting and eating with people who lived there became the way things were done.

Sue’s enthusiasm was contagious and the majority of the staff team are now competent in using the person-centred thinking tools. Each member of staff was taken off rota for two hours and asked to simply sit in the lounge in order to feel, hear and see the ‘lived experience’ of the people they supported. They were then asked “is this care you would be happy with?” The resounding answer was ‘no’ and so the desire for real change began in earnest.

They began to develop one-page profiles with everyone who lived in the home and staff developed their own which included their hobbies and interests . Sam who lives in the home developed his one-page profile with help from Sue.

The main thing that wasn’t working for Sam was that his friendships had all been lost after spending three months in hospital and then coming to live in the home four years earlier. Sam particularly missed his connection with the crown green bowling club he had belonged to for a number of years – he had lost all contact with his old mates.

Sam was supported to write to some of his old friends and as they responded, he gained the confidence to think about how he could reconnect with the bowling club, which wasn’t far away from the home. There was a spring in Sam’s step as he anticipated the possibilities.

The challenge now was finding the right staff member to support Sam to go and watch the bowling. Sue found that Greg, a new member of staff, looked the perfect match for Sam, as he too was a keen bowler. Sam agreed. Within a month, they went off to the bowling club together. Sam cannot bowl because of his hip injury but enjoyed catching up with his old friends, while Greg would play a few games. After a couple of months, it was as though Sam had never been away. Greg and Sam went once a fortnight.

Sam now writes the monthly newsletter for the bowling club. Prior to retiring, Sam was a keen writer and produced the church newsletter each week, so he feels that he is giving something back.

Sam’s life feels very different now and as he said recently, “I’ve got something to get up for, meeting the lads and I’m working on a newsletter”. This all began by listening well to Sam and developing his one-page profile with him. The information it captures is used by all those involved in Sam’s support to ensure that he is living life the way he chooses.

Read more about personalisation and dementia including blogs, resources and related media articles at www.personalisationanddementia.wordpress.com

By regaining your identity, you release your child to build theirs

Guest Blog by Rachel Mason, Parent carer

Rachel Mason

Rachel Mason

Once upon a time, I had a live-in job at a Prep school as a boarding matron at the time. Looking after all those little ones, would get me dreaming of the day when I’d have my own.

On my nights off, my now hubby and I would  sit in the pub and picture picnics at the coast and football in the park.  We just knew we’d make brilliant parents

This was probably the last time I allowed myself to dream for many years to come.

We began our journey as an SEN family in 1989 when my eldest son Greg was diagnosed with Autism and learning disabilities at 27 months old and Shaun with Autism 2 years later. As time went on our dreams disappeared and  my life seemed to be shrinking in ever decreasing circles until I was living day to day in a reactionary survival mode. There were plenty of specialist services around our sons, delivering to their own assessed needs.

Year in, Year out we would read reports of their progress towards the ‘social norm’ but for our family it was always Groundhog Day.

We were passive passengers on this new journey that services had set our family on.

We had lost any control of our lives and  the will to dare dream of a different future than the one chosen for us.

In 2004, Norah Fry research centre and Helen Sanderson Associates (HSA) were doing a joint project piloting a 6 week  intro to person centred planning and were looking for families to participate. I joined a small group of 8 parents who were gathered gingerly in the back room of a local pub. We knew of each other in passing at parents’ evenings or school fetes but each you could see was on their own island. An isolation that had been caused by the process of service pathways, separating us from our mainstream peers, each other and our community.

When we were asked to introduce ourselves we were “Greg’s Mum, Sarah’s Mother..” we could talk for hours about them..

.. but  all of us were like rabbits in headlights when asked to talk about ourselves!

Think about it for a moment.. We had all spent year after year reliving our child’s experiences and  repeating our child’s life history for services. There wasn’t anything we didn’t know about our child. We had invested so much that it was as though we had taken on their identity!

This role left no time to be a wife, a daughter , a friend. There was no room in our preoccupied short term memory to store our own memories that we had had a life and aspirations for ourselves and our family before this.

We were taken on a personal journey that for some was quite emotional but most importantly for all, liberating.

As we talked over the weeks we realised  the way in which systems of support within services were set up, had gradually deskilled us and the ownership of  ‘any future’ we might get, now belonged to services

The aim of the course was to introduce us to some person centred planning tools and how we could use them to gain back some of that control and determine our own future  outcomes for our  family

In order to do this for our children, the facilitator wanted us to look at ourselves first. Enable us to see ourselves as individuals.  We were asked to write our own one-page profile. Believe me when I tell you – it was like pulling teeth!

It was as though we had all ‘archived’ that part of us in order not to get distracted from our advocacy role by our own hopes and dreams and also, if I’m honest, to protect ourselves from continuous disappointment when our personal goals  were constantly sacrificed.

We were all so exhausted by the system  that we had forgotten the many skills and assets we had and it was very rewarding to recall and record them.

We all left this project changed people.

For some it was an awakening to a lost identity inside themselves but most importantly it helped us all to separate ourselves from our child, enabling us to step back and allowing them to build their own.

Having a one-page profile for myself helped me to find a healthier caring/ life balance. It gave me back perspective, this in turn gave me renewed strength and purpose to work towards my own goals as well as those of my sons

Up until now I had not even thought there was a future for my son. Now I realised that not having a plan for him and constantly reliving his past whilst working with services, meant he was unable to move on as I (his identity) was risk averse and stuck in the past.

Whereas before I could not see the wood for the trees, with clear positive statements within our one-page profiles, I would see solutions instead of problems. I now saw services around my son as ‘tools and resources’ to achieve his aspirations. The one-page profile was the guide that his supporters could use along with his 247grid which I used to map his progress and where he still needed extra support. At last we felt more in control as a family.

My son’s one-page profile also supported me to have a better conversation with schools who began to see me as a partner.  We were at last  ‘Singing from the same hymn sheet’ (page 37)

I truly believe being introduced to one-page profiles changed my life and the continuing life journey we took as a family to achieve what we have to day.