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

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.

What he can do, not what he can’t do

An example of how this mum has used one-page profiles to support her son well at school and to ensure that the family’s relationships with health professionals are equal and balanced. Marianne wanted to introduce her son by describing what he could do, not what he couldn’t do; the one-page profile was the perfect tool.

Written by mum Marianne

Alex’s one-page profile

When my son Alex was about to start pre-school I knew there would be things about his support needs that I needed to be able to communicate to his teachers.  However, I really didn’t want to introduce him or for him to start school life with a long list of things that he needed help doing. I wanted the new people in his life to meet him as the cheeky, funny, confident little boy that he is.

Alex has Down’s Syndrome and from the very early days it has felt like professionals can often be more interested in what he can’t do rather than what he can do. I just didn’t want his education experience to be the same.  Unfortunately it already felt like it was going to be. I found myself filling in statements of special needs for his assessments and I realised how easy it would be to fall into this mindset. I wanted to counterbalance this with positive statements. Starting school was a massive milestone for Alex and I was determined to start him off on the right foot.

Alex’s one-page profile sets out how we want him to be treated, what is important to him and how he wants to be supported. We had used the same profile when Alex attended a short term respite centre and had a very positive reaction, with staff feeding back that it really helped them to understand him.

Using a one-page profile with Alex and his school means that we can be sure that we are presenting him in the best way and have the confidence that people will support him well.  Alex loves playing with his friends, tasty snacks, TV programmes, bubbles, singing and playing with water. He can need support when eating – to be reminded to slow down, he doesn’t understand danger –  so needs people looking out for him and he uses Makaton to communicate so it is essential that people  use this method with him.  His one-page profile covers all of this and much more and is in a simple easy-to-read format so can be picked up and understood quickly.

We update Alex’s profile every  year and I love charting his development and growth in this way.  Each year we see he finds new interests and discovers greater independence. My favourite part of updating his profile is talking to his classmates about what they like and admire about Alex. It is so nice to hear that he is well liked and fun to be around.

Since using a one-page profile with Alex and realising its potential I have introduced one for our family too. We find that we interact with so many health professionals, it sets out how best those relationships can work for us. For example, it is easier for us to have meetings on Thursdays and we prefer to have the opportunity to review paperwork in advance of the meeting. Setting out our stall in this way is empowering. It puts us on a more equal footing and as such we are in a stronger position to advocate for our son.

Championing change

Written by mum, Kate

Kate

I have three children. My youngest boy is 6, a middle girl who is 10 and my eldest Alfie who is 13. All my children have one-page profiles and all for different reasons but it was because of Alfie, who has Down’s Syndrome and is on the Autistic Spectrum that I first heard about them and their powerful ability to communicate, advocate, and direct support.

I live with my family in rural east Suffolk by the coast. It is beautifully scenic and there are some wonderful things about our community that I wouldn’t change a bit.  However, and I don’t feel too bad in saying this, we are not exactly cutting edge in the learning disability and autism support world.  I go elsewhere in the country and person-centred practices have been high on the agenda for some time. Where I am, people still frown and squint slightly the first time they hear the term. Not to say that they are not open to it or indeed all-embracing of the opportunities that come from person-centred tools, they just don’t know about it. I’m hoping that I can help change this and therefore change the community that Alfie will live in so that he has a happy and fulfilled life and a future that we can all look forward to.

Up until Alfie was 9 years old he attended a mainstream School. It had felt important that Alfie was given the same opportunities as everyone else and at the time we thought that sending him to the same place as everyone else would ensure this. It didn’t. The school were not equipped to support Alfie well. Out of the 5 teachers he had during his time there only 2 tailored their lessons for Alfie’s Support Assistant to teach him one-to-one. Because of their lack of understanding of who Alfie was and what he needed, rather than being included, we found that he was being excluded and gradually becoming more and more isolated from his peers. It reached a point where he wasn’t allowed to touch or play with anyone –  Hardly the best thing for a young boy’s confidence and social skills.

We felt that our only other option was a special school for children with moderate learning disabilities. We knew at least here that Alfie would be with people who understood about his specific needs and would encourage and teach the social aspect of school as well as support him in his learning. In many ways this new environment has been better for Alfie.  Now that he is older, his lessons are just 45 minutes long and then he gets to walk to the next class – this type of structure, scheduling and activity is very good for him. Sadly though, despite this being a school designed for children with different support needs I still feel they are lacking in their approach and certainly not at the point where they could be described as personalising the support or the education they offer their pupils.

Alfie is fluent in Makaton but chooses not to use it. He communicates mainly through behaviour and for the school ‘behaviour’ seems to equal ‘bad behaviour’. I regularly get notes about ‘incidents’ that Alfie is involved in – usually relating to him being over familiar with another pupil, hugging them too tightly, or holding on to their earlobes (he gets a great deal of comfort from earlobes). I never hear about the why? What led up to the behaviour? How he was in himself immediately before or after? What can be understood about what he might need from how he has acted?  I just hear about the what. To me this shows a real lack of understanding about Alfie, who he is, what is important to him and what good support looks like (all the things that are recorded on a one-page profile).

I’ve recently started to co-facilitate the ‘Better Life Programme’ – an 8 session  training course for families to introduce them to person-centred thinking tools, what personalisation actually means and how to access things like personal budgets and support from Local Authorities. It is a course that I myself attended and it changed my world. Alfie’s school has given us permission to use their building to deliver this to parents. It is my hope that the learning will spill out into the corridors and become absorbed by the foundations of the school (or maybe that the head teacher will sit in on a session and take something away from it) and this will lead to change.

When Alfie was younger I thought we had to fit him into the world that already exists. I now know that it is the world, our communities, schools, places or work, people’s perceptions that need to change to fit in with him and all the rest of our children. I give Alfie’s one-page profile to people because I know that if they read it they will understand him better, be able to make  a few small adjustments and this will automatically improve their experience and time with him. Alfie’s school were very positive about his profile when I first introduced it and I strongly believe that if they learnt more about this approach and adopted it for more of their pupils it would change the way they support and teach because they would see and understand each child for the unique individual that they are.

Enhancing relationships between families and providers

By sharing her one-page profile with her brother’s support provider, Liz is able to concentrate on being a sister not a carer.  An example of how one-page profiles can improve communication and enhance relationships between families and providers.

Written by Liz Wilson

I am passionate about person-centred ways of working which I have used in my professional and personal life for over a decade now.  My brother and daughter both have Downs Syndrome.  Sarah Jane has grown up with the values of inclusion and person-centred thinking.  Tommy has had a very different life but a move to supported living last year has opened up his world.

About six months ago a new service provider took over Tommy’s contract.  I had been very engaged with the previous provider and began to feel quite cut out of his daily life.  I work full time and can rarely answer a call during typical working hours.  I found it very frustrating to have ‘missed calls’ with no messages or indication of urgency and worried that staff would think I didn’t care.  I am a Family Consultant at a social care provider, Dimensions, where staff share their one-page profiles with families. Working there and seeing the benefit, I realised how valuable it would be for families to share one-page profiles too.  We started doing this within Dimensions and I took the idea to my brother’s provider.  I wanted communication to be constructive and effective, and for people to value my involvement.

I sat down one evening and created a one-page profile for ‘partnership working and fluid communication.’ The profile is about supporting family relationships so I included things that build connections.

To begin with I shared the one-page profile at a review meeting and staff really appreciated knowing a bit more about me and my busy lifestyle.  I gave a copy to the regional manager as well.  I can easily tell the members of staff who have seen and read the profile and those who haven’t.  I keep a copy on the notice board by my desk at home and I jot down the new things I learn.  I plan to give an updated and visually different copy to the team every six months.  I’m going to stick the next one inside Tommy’s wardrobe door as a daily reminder for staff.

Sarah Jane and Tommy often have conflicting needs so a member of staff always supports our time together.  Support staff don’t often co-work with family members and many were uncomfortable with hanging out at home or on family trips.  Now we have a delightful balance of professionalism and friendliness which is much more relaxing.  Niece and uncle have strengthened their relationship because their conflict of interests has been minimised and I can be mum and sister not mediator!

I have high expectations about the quality of support and communication between families and services, and quite rightly so.  However, having my values and needs expressed on a one-page profile enables me to clarify my expectations. When people know what I want and expect they are more likely to give it – and if I haven’t been clear I can change the profile instead of getting frustrated and coming across as a nag.  I now get text messages that are much easier to respond to in a quick break, and voicemail helps me sort the rare urgent issues from those that can wait a day or two.  It is really lovely that Tommy now initiates visits with support from staff and I get good news, not just issues to deal with. When I make suggestions about ways of working or activities to try they are taken as offerings from a partner.  Tommy is more relaxed when we are all together.  He doesn’t use verbal communication but he picks up on tension so I can tell he appreciates the new relationships as much as I do.

Since sharing the one-page profile with the people who support Tommy daily I feel like things are more straightforward.  I would strongly recommend it as a way of enhancing the relationships between families and providers. I love that my views are being sought on things that are important to Tommy.  My role has undergone a transformation too, I feel like I can be a more ordinary sister alongside managing his personal budget and finances.

Sharing a mum’s rich insight – Using one-page profiles with your child

How one-page profiles can help parents feel confident when entrusting others with the care of their children. This story illustrates the benefits of capturing the rich information that a mother knows about her child on one page to help others support, play and communicate with her children.

Written by Alfie’s mum.

My son Alfie is a cheeky seven year old boy with a mischievous personality, a wonderful laugh and all the usual sibling rivalry you would expect between him and his twin sister. Alfie has Downs Syndrome and as well as receiving ‘Carers Support’ funding we have access to various activities and clubs which he loves to attend.

I first realised the value of a one-page profile for Alfie when taking him to these clubs. It isn’t always possible to tell someone all the important information they need to know about his likes, dislikes and triggers for behaviour in a conversation.  We used the profile to capture this information and share it easily with the people who would be looking after him.

As Alfie does not talk, I wrote down everything I could think about him.  At first, I had difficulty differentiating between ‘what is important to’ Alfie and ‘what is important for’ him.   I sent it all to our Family Footings Facilitator, Yvonne, who guided me and supported me to condense my statements.

Eventually I detailed on a single sheet of A4, with special Alfie photographs, ‘What I love about’, ‘What is important to’ and ‘What is important for’ Alfie.  I printed copies to hand to carers, church, school, and all his activity clubs; which included, cookery, street dance, football, acting classes, special needs group and baby ballet.

At some of the groups that Alfie attends parents are not allowed to stay and observe.  Leaving the one-page profile with him gave me confidence that Alfie would be treated as an individual even when I wasn’t there to help him communicate.

It makes a huge difference to me to know that the person caring and looking after Alfie has been given some insight and knowledge of him as a person.  They do not need to ask, “What does he like to do?”, they know.  This enables me to concentrate either on his twin sister or to use my ‘respite’ time to do what I need to do.  By having this tool, it visually reminds the people spending time with Alfie what they can do to make it more enjoyable for him.  It gives them options, if necessary, to help lead and guide him in his play and it enables them to communicate with him in a way that they know is important to and for him.

Alfie’s profile achieved everything we wanted it to achieve. It captures the rich information I know as his Mum and helps me to share it easily with others.  Even his grandparents have one and use it.  I appreciate it so much that I made his twin sister one too. She doesn’t have a disability but it saves me having to explain about her as well and she is as important to me as Alfie so it wouldn’t be right to do for one and not for the other.

I share the concept of the one-page profile with others whenever I can and explain the benefits and simplicity of such a succinct piece of information which is readily at hand.  If we have a babysitter I just give them their profiles, saying this is very useful and you will refer to it.  It gives me time to then explain routines etc.  Before knowing about one-page profiles, I was forever telling people what he did and didn’t like and although the lists were not exhaustive I would always forget an important bit and then have to ring back with “just one more thing”.  Now I know for sure that when I entrust the care of my children with someone, especially with Alfie, as he cannot talk, they can easily refer to the one-page profile and as such will be following my beliefs, wishes and respecting me as a parent and person, as well as respecting Alfie and Alice.