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Personalised care for children with special educational needs and disabilities

Following the Health and Care Innovation Expo last week which showcased progress across the country in delivering personalised care, Senior Commissioning Manager Amy Tinker from Salford City Council talks about how they are working to transform the lives of children and young people with special educational needs and disabilities (SEND), as well as sharing what personalisation means to her.

Tell us about the work you’re doing to personalise people’s care in Salford

Salford began working with the Greater Manchester Health and Social Care Partnership a year ago to explore innovative community approaches centred around individuals. We initially set out to develop integrated personal budgets (combining health and social care funding), but after working closely and speaking with families, Salford began thinking about personalised care more broadly. This means we’re now trialling the involvement of professionals from across health, education and social care to support people who have children with special educational needs – involving families from the very start. Additionally, Salford has awarded grants to community groups who are now delivering a wide range of local activities for children with disabilities, including cooking, computer literacy and drama.

One local father, whose daughter receives a personal health budget, said: “The benefits and outcomes of a personal health budget can only be a positive one for everyone involved in a loved one’s wellbeing and inclusion. It’s paramount that families and carers have flexibility and choices when using personal health budgets, as every family’s needs are individual to them.”

What’s your approach been locally?

We started by inviting local families to work together in a group to develop personalised care plans with their children. The first planning session was a steep learning curve for me, as an observer. A couple of the families became quite upset as they discussed facing fears about their children’s future. I realised that if we are going to plan together, the families will need support and must be comfortable working in a group with some shared objectives.

What difference do you think this is making locally?

One parent said: “I looked at the people involved in my son’s life and realised that he doesn’t actually know anyone his own age, out of school”.  But his personalised care plan is looking to change this. What I’ve seen over the course of the planning sessions is the emergence of a positive approach to care that focuses on the aspirations of the young people involved, rather than just the care itself.

What’s next in Salford?

We have many pieces of the jigsaw in place for more personalised approaches within the community, but it’s not yet complete. When we get it right it makes a difference. For example, one area of Salford has been looking at how to improve achievement of the SEND Code of Practice principles, to help children with special educational needs to go on to lead happy fulfilled lives.

What does personalisation mean to you?

For me, personalisation is a value. If we can support parents to understand their child’s neuro-diversity and enable people with learning disabilities to be independent, there is much less need for residential or out-of-borough placements. This support needs to begin pre-diagnosis, and front-line workers need training in disability as well as personalisation. It’s essential that we include the voice of the young person in our decision-making as their disability is unique to them. We must be good listeners at every level of decision-making, not just assuming we know what’s needed. Parents often talk about feeling disempowered when trying to get support, as opposed to being thought of as an expert representing the needs of their child.

As part of work to make care more personalised, Greater Manchester funded 11 places for Salford to take part in policy-making course ‘Rights of Passage’. The course brings together professionals, parents and young adults with a disability. It’s the most positive thing I have ever done around the topic of ‘disability’ because it focuses on enablement and what we can do to make a difference. Living with neuro-diversity can be unbearably hard; but it doesn’t have to be. The work we have done in Salford has shown me how much more we can do for people with learning disabilities if only we can focus on their individual aspirations and build on strengths.

For more information about the work Salford and three other areas in Greater Manchester have been doing to better support people with a learning disability and their families, see the Gloriously Ordinary Lives report.

Greater Manchester is one of NHS England’s Personalised Care Demonstrator Sites which is working to deliver personalised care at scale and demonstrate how it improves people’s health and wellbeing, joins up care, reduces pressure on the health system and drives efficiency. For more information visit the NHS England website or contact us, england.personalisedcaredemonstrator@nhs.net, to ask to join the Personalised Care Collaborative Network.

Amy Tinker

Amy Tinker works as Senior Commissioning Manager for Salford City Council. She specialises in projects that focus on neuro-diversity and mental health for children, young people and families.

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