A Day in the Life of…….A Life Plan Facilitator

By Sam Sly

I am a Life Plan Facilitator and I love my job because through it I get to really know people. I get to see through the labels to the real person and then I get to help them plan for a better future than the life they are currently living in a Specialist Hospital.

What is a Life Plan?

A life plan is just what it says on the tin! It is a plan made by a person and the people that know them best detailing where they want to live (and what their house needs to be like), what they want to do with their life (jobs, hobbies, ambitions) and what help they need to live a great life (paid help, unpaid, family, technology). The plan when written up can be used by the person or family with a personal budget to set up what they need, or by commissioners to find a housing and a support provider and then use the plan to tell them what they want to commission and how much they have to spend.

I sometimes describe Life Planning as sorting out ‘what’; what does the person need to live a good life? It is difficult to contemplate ‘how’ to support someone until you know the ‘what’.

Life Plans are not just useful for people in Hospitals either, I have facilitated plans for lots of different people including children, people with physical disabilities and people with mental health needs.

Preparation is everything

Getting ready for a Life Planning day starts months before the actual day, as preparation is key. People are used to having professionals led meetings to plan for the future and therefore introducing the idea of a whole day centred around the person, led by the person, attended by the people that they want and who know them best, and instead of talking about risk, talking about strengths, hopes and a life can take a bit of getting used to for some. I sometimes get told by professionals that they can’t spare a whole day, but I argue that we get more information in one day, thinking together with the right people involved than through months of ‘assessment and treatment’.

I send easy read preparation information to the person and their family (if they have one) to enable them to start thinking and to get their thoughts on paper before the day as for some the thought can still make them nervous, as they expect a traditional meeting and trying to recall information from sometimes decades before can be difficult on the day.

The right time for a plan. When is the right time?

One of the challenges I often get from professionals is that it is not the right time to do a Life Plan and therefore planning should be put off, either because the person will think they are leaving immediately, or the person hasn’t finished their ‘treatment’ yet or that ‘professional clinical opinion’ is that involving the person in planning their own life is not appropriate. I would argue that if good discharge planning was embedded, as it clearly should be, in a Hospital treatment plan it would be started as soon as the person was admitted and there would not be these discussions. But it isn’t, and many people get poor discharge planning as a result. It is better to plan and be realistic about timescales for things to happen than to not plan. Also most of the people I plan with are desperate to get out of hospital, and it is often a lack of planning that is holding them back.

Who? Where? and When?

The decision on who to invite, where it will be held and belongs to the person and their family. Because life planning is about the person, people attending have to know them really well or it is pointless them coming. People attending will have to contribute to thinking about what the person’s dreams for the future are and what their skills and talents are so if they don’t know the person they will not be able to contribute. The only exception to this is where a professional needs to hear what is being said because it is their job to make it happen. The golden rule (which after reading this you will see is not really a rule but common sense) is that I would not facilitate a planning day if the person and/or their advocate, and/or their family are not attending. I have had planning days where the relationship between the person/family and professionals has been so broken that the family could not be in the same room and these planning days have been facilitated in different ways, but where possible I have tried to get people in the same room because the process of Life Planning can build bridges, give time for reflection and help relationship building.

I have facilitated plans in all sorts of places, as the person is asked to choose somewhere they will feel comfortable and relaxed. Places like village halls, rooms in pubs, a railway carriage at a steam railway and a room at an airport so the person could watch the planes in the breaks have been venues for planning days.

Getting a date when everyone can attend can take time, but it is worth the wait.

Tissues, photos, biscuits and lunch

I always bring tissues, because talking about bad stuff even when it was many years ago is very hard. I ask the person and their family to bring photos from the past so that participants get to see the person enjoying life and perhaps doing things that they would not believe now that they had ever done, because they are only seen through the lens of a Hospital. Biscuits and lunch too are important, because I want the day to be a good day, a day to celebrate the person and to look positively to the future and sharing food is always a good way to do this.

What do we talk about during the day?

The principles I hold dear to my heart are those of Simon Duffy’s Citizenship and the keys to Citizenship are Freedom, Purpose, Money, Home, Help, Love and Life and a Life planning day is framed around these principles. The day is guided by the discussions of the participants, however there are key areas we must cover to be able to write a plan that is meaningful and doable. Those areas are what the person wants to do with their life, where they want to live, and what help they need to live a good life and who is going to pay for what.

We do not talk in great detail on the day about risks. Some professionals think this is wrong, however I believe that to get a great life for someone you need to build it on the positives. Building a life on risk alone never works because it does not take into consideration the strengths, ambitions and hopes the person and their family have for the future. Sadly though this is how a lot of ‘discharge’ planning is done. Once the day is over I will add enough information from the professional’s assessments and care plans about risks so any new support provider is clear about these areas but also reads about it in a document that is bursting with the person’s strengths.

The person’s life so far

Although most of the day is positive and enjoyable the first part when the person and their family tell us about their life experience so far is often not. Most of the people I work with and their families have had heart-breaking events in their lives, more often than not precipitated by failures by those supposed to be caring for them. This is where the tissues are needed. Allowing a person and their family to talk through their life experience is also quite a cathartic process and the professionals in the room often learn things about the person that they did not know before. We discover the things that went wrong that we do not want to repeat and we also discover positive things about people that have been over-looked or forgotten because of all the trauma and grief. Recording events from birth to present day, conveyed directly by the person and family also means they will hopefully not have to keep repeating it to every new person they meet in the future. It also stops the reliance on the ‘Chinese whisper’ type cut and paste negative chronology of risk that is traditionally used in Hospitals to portray the person’s life so far. Of course not everyone wants to recount their life, especially if it has been a traumatic one and so sometimes the person will come in after their family have told it, or they want to write it down and others to read it.

The important thing is that the person and their family are given the opportunity to tell us what they want to so that lessons can be learned and mistakes not repeated and so that those professionals that meet someone for the first time do not take them at face value but understand why they might do what they do and say the things they say.

A good life

To understand what a good life will look like for someone I find out what people admire about them, what they enjoy doing, what they are good at and most importantly what their ambitions for the future are. This gives a great framework to start to help people settle into their new communities, and contribute hopefully to making friends and connections along the way.

Home

I would say that nailing down where someone wants to live is one of the hardest parts of being a Life Plan facilitator because often professionals, sometimes families and even the person themselves have views of home that are tainted by ‘serviceland’. Serviceland is the world we have made for people with disabilities that is full of things we would not want for ourselves but think are OK for people with disabilities and this includes housing. For example I wouldn’t want to share my home with someone who gets distressed, breaks things and scares me but it is seen as OK for someone with a disability to. I wouldn’t want to live somewhere with people I don’t know but it is seen as OK for someone with a disability to. Equally if I am planning for someone who, when they get distressed, hurts other people, it is very unfair to expect those people to have to live alongside them. These are tricky subjects to discuss but are so important in getting things right for a person. The person’s life so far will usually give us lots of clues as to where someone would be best living from what has worked and not worked in the past.

A real home is somewhere we feel safe, we have privacy, we have control over what happens and is a base for our life. As a facilitator sometimes I have to remind participants of this.

Other regular themes that arise from Life Planning participants and need talking through are that the person needs to live with other people so that they are not lonely, or the idea that people are safer from abuse in a home shared with other people and multiple staff, or that extra staff needed in emergency situations are more readily available if people live in a shared home and have a shared staff team around them and not a dedicated staff team in their own home. I would argue that all of these situations have evolved through poor quality support and budgetary constraints steering decision-making and that is what we have to change.

I have found professionals sometimes have views on where someone should live tailored to what they know is available in their area, rather than what the person really needs. As a facilitator my job is sometimes to challenge perceptions and to open up to participants the varied housing options that are available including shared ownership. Once we have decided whether the person wants/needs to live alone or not, a housing specification is put together by the participants for the person detailing where, what kind of house, and what needs to be in the house. We also talk about whether the person has capacity to understand a tenancy if that is needed.

I often get told by professionals not to raise certain housing options because they are not available in a particular area, or because they are seen as too expensive. My opinion is that if people don’t know what is possible, and if we don’t push for the best options for people then nothing will ever change.

Help

The Life Planning day will detail what help someone will need and that may be paid help through a support provider, natural support from friends and family or assistive technology. As a facilitator I help the person think about the help they need and how it is best given. My experience is that people have often not had any control over the help they get; when, what and who. Participants explore all of this. People often have no choice over who helps them and this causes major issues. If I spent 8 hours of my day with someone I did not like I think I too would find a way to express my frustrations and it may involve a lot of swearing! Sadly, again because of serviceland we expect people with disabilities to accept strangers working with them. During the planning day we put together the detail for a team specification and a job and worker description. I usually start by asking the person and their family to describe who they get on with as this is the most important thing. A support provider can give any amount of training to a staff member but if the person does not get on with them, and they do not like the person it will never work.

I also ask the person how they want themselves and their family to be involved in the recruitment and training of their team. This is sometimes a revelation to people as they have been so used to being excluded. There is very few people who chose not to be involved in recruiting their team. My experience is that when a person and family recruit a team member they start with a connection, and this cements a relationship that will usually stand the test of time.

Making it happen

As a facilitator it my responsibility to make sure everyone is clear on what needs to be done next to make the plan a reality. A clear action plan with timescales is the last bit of the process. Sadly, as a facilitator I am not responsible for making things happen, and if I was honest about any part of the process that I worry most about, it would be that those professionals tasked to make things happen sometimes don’t.

Raising expectations

A facilitator’s role is to raise expectations both for the person, but also for those professionals in the room. At times this has been thrown back at me as a negative and a reason not to plan in the ways I do, but if at the end of a planning day I did not leave hoping I had helped people think a little differently and see the future a little bit more optimistically, I don’t think I would be able to carry on.

Sam Sly Enough is Enough Time4Change & I’m Out of Here Ltd