Here, Leah shares some of her story about caring for her three sons under the age of 18 who are all diagnosed with Autism and a range of other needs.
I have 3 children all of which have Autism, some learning disabilities and possible genetic syndrome. The boys are twins (age 15) and my younger son (age 6). They’re all amazing and despite having the same diagnosis and being twins they present in very different ways and have different needs. All 3 need to be kept safe due to a lack of understanding regarding dangers. All 3 require support to meet daily care needs and this varies from prompts to full assistance. All 3 boys attend special schools, (two out of area). This makes me feel very lucky as it means that their provision has all the adaptations and adjustments required to support them successfully. I stated that this makes me feel lucky and I say that as I witness other parents and carers having a daily fight to secure such a placement. I myself had a long battle too originally, and although it almost cost me my mental health I’m so glad I persevered.
For the time the boys are not at school, then they need support and I’m caring for them physically and directly- be that: sorting medication, clothing, cooking, personal needs, dealing with emotional difficulties…. there’s also tasks and appointments during the school day that need to be dealt with such as preparing for changes to routine, dealing with care plans, EHC plans, genetics, orthotics, OT, SALT, surgery, continence nurse, short breaks and the list goes on. Having said this, again- I’m lucky as I have all this professional input and undoubtedly it takes up so much time; but I know the benefits are immense and some other carers are left to struggle without this level of input. It’s hard to put any actual timings on my caring activities but needless to say that I had to leave my career 6 years ago due to the level of need so that I could become a full time carer to the boys.
All 3 boys are in receipt of Short Breaks and this provides a personal assistant for 3 hours each per week (term time) and 6 hours during school holidays. We also have an amazing family support network that allows us some overnight respite. When not caring, I like to walk and read. I also like to increase my skill set with training and courses (usually SEND related) to better stock my armoury in preparation for the next battle! I also volunteer within community protects and support 2 local SEND charities.
Recognition that having multiple children with SEND increases need. Not having to battle and fight for everything which is constantly the case due to such a lack of funding (so you’re either fighting to get a service or fighting to keep it). Better SEND (Special Educational Needs and Disabilities) guidance that is not open to interpretation; a more inclusive society, and for person-centred approaches to be used across all services. My children’s needs are not the issue. They’re different, not broken but what is the actual issue is a general lack of acceptance and understanding. Being a carer for my disabled children has been so difficult at times, taking its toll on my own health and wellbeing. However, the one thing I’m sure of is that it’s made me a better version of myself and for that (and so much more) I’m extremely grateful.
The reality is hard, the worry for now and for the future can be all-consuming. The constant needs and demands can be draining but each day arrives with some joys (be that a milestone or just a positive day generally). It also arrives with the hope that today is the day that paves the way for true acceptance and inclusion.
Sometimes I feel completely exhausted and out of my depth. Sometimes I feel like I’ve completely lost myself. I feel selfish because I want to take a long bath, wash my hair, wear unpractical clothes, see friends, take a road trip, have a conversation of my choosing; but then sometimes this makes me feel more upset as its a glimpse into another world. I never resent my children and that’s the truth. As I said earlier, they’ve made me a better person; but sometimes I feel tired and overwhelmed especially after a long period of no sleep and when big transitions are approaching as then the worry of the future seems all-consuming. Sometimes I just need a crystal ball to show me how they’ll manage when I’m not around; or if I become ill; or if services are cut any further; or if some parts of society become even less tolerant and more ignorant. Performing any physical and practical needs can be tiring but trying to constantly plan and pre-empt for me is the part that really wears me out- my mind feels to be in constant overdrive.
At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.
If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.
For more information about Carers Week 2021, visit: Carersweek.org
When we’re delivering training or webinars about Support Brokerage we often explain it using the analogy of a car and a journey.
The car represents a person’s life. The person is the driver of their own car. This represents the core principle of Support Brokerage, which is that the person is in the driving seat.
In other words, as Support Brokers- in all of our practice and interactions we are continuously revisiting the principle that the person we are working alongside is taking the lead in making decisions about their life- where they want to be going, what they want to be doing, how they want to be supported and who will be involved. This is a core principle of Self-Directed Support.
Now to continue with our analogy, all cars need fuel for the journey.
Some people need assistance with putting ‘fuel’ in their car. This is where the Support Broker can become involved. Support Brokers are multi-skilled individuals who come from a range of different backgrounds. They have knowledge and experience which they can bring to assist the person they work alongside. Support Brokers can be people with lived experience, people who have worked in the Social care sector, Health professionals, Housing professionals or Community/Third sector workers. The Support Broker brings their range of skills, experience and knowledge, and uses this to assist the person with adding ‘fuel’ into their car. The ‘fuel’ we see in the image is referencing a range of different ‘strengths-based’ approaches which a Support Broker can lean into as they are working alongside the person to assist them with achieving their objectives.
The term ‘Support Broker’ is neither a job title, nor a job description, because the tasks which a Support Broker carries out will vary with each person they work with. Remember that the person is in the driving seat, and they will determine the remit and involvement of the Support Broker.
Now that the fuel has been added to the car, it is ready for the journey.
Remember, the person is in the driving seat. Once they have fuel in their car, they may decide that they need no further assistance from the Support Broker and decide to continue the rest of their journey independently. However, they may require some support to plan their journey and/or navigate the various destinations. In the image below, you will see that there is a passenger in the rear seat of the car. This is the Support Broker, who is holding a map and calling out directions- all the time acknowledging that the person is still in the driving seat and they are in control of the journey. At any point, the person could ask their Support Broker passenger to get out of the car!
For some people, they may have multiple ‘passengers’ in their car- these may be close family members or friends & members of their local community who are very involved in the person’s life; alongside the Support Broker who is also a passenger. We sometimes refer to this (or formalise this arrangement) as a ‘circle of support’. The principle of ‘passengers’ and the person in the driving seat still applies.
The journey of Support Brokerage may include visiting one or more destinations which help to bring the person closer to achieving their objectives. These include the ‘keys to citizenship’ of: Life, Love, Help, Purpose, Money, Home and Freedom.
The Support Broker may be tasked with carrying out specific actions as part of this journey, which could include person-centred planning, support with navigating the social care or health assessment process, identifying resources which help to achieve the person’s objectives and developing a support plan. The range of tasks is broad and should not be defined as an exhaustive list.
As with any journey, the longer we spend in the car and in the driving seat; the more confident we become and the more skilled and experienced we become at driving the car. This is also true of the input of a Support Broker. As the person becomes more confident and skilled at advocating for themselves, knowing and understanding their rights and being able to take the lead in discussions about their own support, the Support Broker is able to step back with the aim of not being needed at all in the end. For some people, it may be that they will always need some element of involvement from their Support Broker, but this should never be assumed and should regularly be revisited as a conversation with the person about how they feel things are going and how confident they feel about doing things independently.
Imagineer offers a range of training & mentoring services to support the knowledge and practice development of practitioners; and also to help people to know and understand their rights. Our next Support Brokerage course is running in February 2020. Consider signing up for our ‘Quick bite for lunch’ webinars which explore practical ideas taken from Independent Support Brokerage. These practical approaches can be embedded within your practice. We are also planning a series of ‘Deep Dive’ webinars for the new year, which will be advertised on the ‘Webinars’ page of our website.
You can also subscribe to our mailing list if you would like to be kept up to date with what we’re doing.
If you can’t find what you’re looking for on our website, please send us an email: info@imagineer.org.uk
Liz Leach Murphy is the Founder of Imagineer Development UK CIC, Chair of the National Brokerage Network and a Freelance Consultant working on personalisation within the Health and Social Care sector/community space.
Sarah Holmes is a Freelance Consultant working on personalisation within the Health and Social Care sector/community space; and a Director of Imagineer Development UK CIC
Both Liz and Sarah are practitioners, trainers and coaches in Independent Support Brokerage and consultancy for Strengths-Based Approaches with collectively over 40 years of experience in the Health and Social care and community sectors.
Imagineer Development UK CIC is a social enterprise based in the North of England with a national reach; originally set up as a test bed for Independent Support Brokerage in the UK. Imagineer is the hosting organisation for the National Brokerage Network, which is a community of practice for Independent Support Brokers. Imagineer provides a range of training & consultancy services in Support Brokerage, Person-Centred and Strengths-Based Approaches.
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Leaders and decision-makers within the health and social care sector generally grasp (and subscribe to) the concept of Personalisation and Self-Directed Support; but often feel ‘stuck’ in relation to the systems, structures and processes that they are required to work within.
Having a simple lens by which to review policy and practice could be a catalyst for real and lasting change.
Let’s explore this in a little more detail.
Independent Support Brokerage is an approach which strongly aligns with the theory of self-determination and was first developed by families of people with complex needs, called the Woodlands Parents’ Group in British Columbia, Canada in the 1970s.
When the person is in the driving seat of their own life, amazing things can happen; and solutions and opportunities can be discovered which were not even considered through the narrow lens of commissioned provider services and statutory provision from Health and Social Care. Elements of Support Brokerage exist in many different models and approaches, but authentic and truly Independent Support Brokerage is rooted in a wide range of Person-Centred Practice and Strengths-Based Approaches such as:
Some of the barriers and challenges presented by the current Health and Social Care system include:
Our experience as practitioners of Independent Support Brokerage has shown that many of these barriers and challenges can be overcome when the following conditions are present:
The mechanisms and legal structures enabling these conditions to be present already exist, and it is happening in small pockets around the UK.
So why isn’t it happening everywhere? There is a growing groundswell of momentum towards the radical transformation of the welfare state. The Health and Social Care sector forms one part of the puzzle. There are many refrains of ‘Coproduction’, ‘Personalisation’, ‘Strengths-Based Approaches’ and ‘community development’ being sung by different groups wanting to see change. If we gather our voices together collectively and sing as a choir; we could weave our harmonies together to create a symphony of citizenship, inclusion and equal rights for all.
Do you want to join the chorus?
We are in the process of developing a set of quality standards which map across to other aligned quality standards and outcomes indicators for the health and social care sector. Visit our website: https://www.imagineer.org.uk// to sign up for updates; and read our latest paper: ‘What does ‘good’ look like? to find out more.
About us:
Liz Leach Murphy is the Founder of Imagineer Development UK CIC, Chair of the National Brokerage Network and a Freelance Consultant working on personalisation within the Health and Social Care sector/community space.
Sarah Holmes is a Freelance Consultant working on personalisation within the Health and Social Care sector/community space; and a Director of Imagineer Development UK CIC
Both Liz and Sarah are practitioners, trainers and coaches in Independent Support Brokerage and consultancy for Strengths-Based Approaches with collectively over 40 years of experience in the Health and Social care and community sectors.
Imagineer Development UK CIC is a social enterprise based in the North of England with a national reach; originally set up as a testbed for Independent Support Brokerage in the UK. Imagineer is the hosting organisation for the National Brokerage Network, which is a community of practice for Independent Support Brokers. Imagineer provides a range of training in Support Brokerage, Person-Centred and Strengths-Based Approaches.
Further reading: What does ‘good look like?: https://www.imagineer.org.uk//wp-content/uploads/2020/08/What-does-good-look-like.pdf
Sign up to our mailing list to be kept updated on our work in developing quality standards for Person-Centred practice and Self-Direction: https://www.imagineer.org.uk//
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