Learning disability and autism keyworker programme

Our team work alongside the Dynamic Support Registers (DSR) for Hampshire, Isle of Wight, Portsmouth and Southampton. We work with DSR Leads and through discussion, consideration and agreement identify suitable CYP to be allocated to a Keyworker.

To be eligible for a Keyworker, the child or young person must meet the following criteria:

• Have a diagnosis of a learning disability and/or autism
• Be listed on the DSR
• Be at risk of admission to, or currently an inpatient at, a specialist hospital 
• Be up to and including the age of 25 years

We are a short to medium term (3 to 6 months) intervention service to provide holistic and robust support to children and young people (CYP), their family and the professionals working alongside the family.  

We link in with the CYP and their family, review their circumstances and connect with relevant professionals and community networks to create a coproduced person-centred  plan. This will include goal setting (which we encourage our CYP to work on) services and strategies to ensure the CYP has the right support in place to live with an increased quality of life in the community and reducing the possibility of reaching crisis and requiring admission to a specialist hospital.  

We approach our work through developing a complete overview of the CYP/family’s circumstances, and then to problem solve identified issues or concerns.  

We support the CYP and their family, with relationship building tools, techniques, and requirements including discharge planning, preparing for any transitions, independence planning and admission avoidance.  

We support professionals to communicate and collaborate more effectively to ensure CYP and family are better supported in the community. We raise awareness within professional teams and within educational settings to increase attendance in these areas. 

We support the building of bespoke tools, techniques and knowledge to support the complexity of autism and learning disability for CYP, their families and professionals.

We support CYP, families and professionals when stepping down our work with CYP, through creating a comprehensive sustainability plan that supports them back in the community, helping them maintain wellness and stability, and through any transitions they may face. This reduces levels of re-admission or increases in rag status within the DSR.  

We also recognise risks to other family members, i.e. siblings and support management plans to address these to ensure quality of life is increased for CYP and their families.

• To keep our young person safe and to advocate for them. To ensure the voices of our children and young people (CYP) are heard and understood.
• To ask, listen and act. Learn from CYP, and their families to really understand the reasons behind a crisis/need for admission. Understand the needs of our young person and be an advocate for them in relation to how their Learning Disability and / or Autism impacts the specific support they need.
• To be adaptable, flexible and person centred in our approach, putting the needs of the young person at the centre. To also provide support to the people around that young person with a view of creating wider positive impacts to the life of the young person.
• To be collaborative in our approach, to support and empower the services involved within the young person’s life. To build relationships and maintain professionalism with other professionals and statutory services as part of the integrated care system of the Keyworker function.
• To hold services across the system to account where necessary. To challenge and influence at a system level to unblock barriers and achieve positive change for children, young people, and their families.
• To work safely and within the framework of the approved SOP. To adhere to our own process and policies, to protect our own safety through measures such as safe working procedures, self-reflective practice and maintaining our own health and wellbeing. To recognise one’s own skills and limitations, seek appropriate support when needed.
• To ensure that we offer a consistent, equal and equitable service, communicating clearly and evaluating the impact and benefits to ensure the Keyworker Function is both equal and equitable and its performance is both qualitative and quantitative in relation to the delivery against the SOP.
• We signpost to training like Oliver McGowan and Adaptive Mentalization Based Integrative Treatment (AMBIT) training.

We work with the individual/family to:

• Provide targeted intervention to reduce risk of admission to a specialist hospital.
• Work with the individual and family directly and indirectly across settings and key transition points (e.g. inpatient within a specialist hospital, community, child to adult services).
• Build relationships to better understand the wants, needs, goals and aspirations of the young people we work with – specifically from an autistic perspective.
• Build relationship/s to support the individual’s own understanding of how autistic need impacts them. Identify ways to support the limiting elements of autism and build upon the strengths to build positive outcomes and support aspirations.
• Empower the individual through developing bespoke tools to support their access to services (e.g. hospital/communication passports).
• Work with the family to find effective ways to support the young person by pulling apart and working on what is required (for example sensory requirements).
• Empower young people and their families to advocate for themselves.
• Understand the holistic needs and identify ways to meet these needs across professional networks.
• Identify priorities in their service provision and reduce barriers to their access to these services.
• Signpost to services in response to personalised needs (including advocacy, employment, sport, education services).
• Represent their views and needs in professional multi-agency/multi-disciplinary planning forums

You can find feedback from families we have worked with, as well as an example from a young person's perspective, further down this page.

We work with professional colleagues to: 

• Help professionals understand challenges that CYP and their families experience and how these behaviours are presented due to Autism or LD like:
  • Sensory overload - we have sensory documentation to raise awareness and provide guidance on how to minimise overload. In addition to this we can signpost to places such as Reminds and Aim who have sensory toolkits that they can lend to individuals).
  • Communication needs – in the form of Easy Read documents and producing pictorial instructions using Inprint software.
  • Structure and routine - documentation providing guidance and raising awareness of A&LD and how these diagnoses impact on daily routines.
• Provide opportunities for implementing new and different ways of working to support with the child or young person and /or their family.
• Work with other professionals across service boundaries and settings to support a more consistent level of support around CYP complex needs.
• Work with professionals to build a greater understanding of autistic needs, autistic overload and how autism influences a young person’s presentation.
• Support inpatient staff to create a low stimulus and autism safe environment in specialist hospitals to reduce overwhelm and autism meltdown.
• Work alongside the crisis provision professionals to offer a personalised autism-focused insight into needs.
• Advocate for the child or young person and their family around professional services to ensure the right information and help is in place at the right time.
• Supporting collaborative and cross system working with relevant teams to enable access to the right community services to keep young people safe and well in their local community.
• We collaborate with the following teams / attend the following meetings:
  • Multi-Disciplinary Teams (MDTs): We raise awareness of the needs of the young person and their family at meetings involving various organisations collaborating together to provide a family plan.
  • Special Educational Needs & Disabilities Information Advice & Support Service (SENDIASS) We engage with colleagues to ensure information, advice and support for parents and delivery carers is provided
  • Child and Adolescent Mental Health Service (CAMHS): We collaborate with professionals to ensure that our young people have access to assessments and treatment in relation to their emotional, behavioural or mental health difficulties 
  • Experts by Experience: By engaging with people who have experience of using services as either a service user or a carer, we ensure our communication and delivery of intervention is suitable to meet the needs of others
  • Local Authority Education Provisions: We link in with commissioners and educational settings to ensure the educational provision is suitable and meets the needs of the young person
  • Community (Education) Treatment Review (C(e)TR: We provide support and ensure the views and voice of the young person is heard to ensure the correct support is in place
  • Local Area Emergency Protocol (LAEP):  We support the professional network to in identifying and meeting he needs of individuals in crisis.

You can find feedback about our programme from professionals and further information about organisations we work with further down this page.
 

If you have any queries or would like more information relating to the Keyworker team, you can contact us at hiowicb-hsi.aacc.ldap@nhs.net 

Further information on the following areas can be found here:

Dynamic Support Register (DSR): This is a list of individuals who are autistic or/and have a learning disability who are at risk of admission to a specialist hospital if the right support and treatment in the community is not identified and provided. Find out more about the DSR.

Multi-disciplinary Teams (MDTs): These are meetings made up of staff who are members of different health and care organisations and professions (for example this can include Care Coordinators, Keyworkers, Occupational Therapists, General Practitioners, social workers, nurses), that work together to make decisions regarding the treatment of an individual they support.

Community Care (Education) and Treatment Reviews (C(E)TRs): These meetings take place to ensure that the support put in place for an individual is meeting their needs.  These are held for any individual who is autistic and/or has a learning disability and is at risk of admission or currently admitted to a specialist hospital. Find out more about CETRs.

Local Area Emergency Protocols (LAEP): These are urgent meetings, which may be carried out in person or online due to the need for a fast response to a request to hold one. The focus of the LAEP is to look at ways someone can be supported to remain in the community when they are in crisis, so that, if at all possible, admission into a specialist hospital can be avoided.

• National Disability Card and National Carers Card fequently asked questions

DSR teams

• CETR team: hiowicb-hsi.cetr@nhs.net
• Hampshire and Southampton: hiowicb-hsi.ld-s117chc@nhs.net   
• Isle Of Wight: hiowicb-hsi.learningdisabilitydrr-iow@nhs.net
• Portsmouth: jenna.szymanski@solent.nhs.uk 

Information hub for families:

• Family Assist

Organisations we have engaged with (please note this list is not exhaustive and subject to amendments):

• Autism Community Research Network (ACoRNS)
• Autism Hampshire: Phone: 023 9250 1733 (Gosport), 01489 880881 (Fareham)
• Bringing Us Together
• Fareham Autistic Spectrum Support: 01329 829522, Merryfields Sure Start Centre, St Anne's Grove, Fareham, Hampshire, PO14 1JJ
• Fareham and Gosport integrated learning disability: Wickham Road, Fareham, Hampshire, PO16 7ET
• Go Create
• Hampshire Outdoors
• Havant Mind Wellbeing Centre: The Hub, 39 Park Parade, Leigh Park, PO9 5AA, phone: 023 92498916, fax: 023 92481886, email: wellbeing@easthantsmind.org
• Koala
• Mencap Southampton: 187a Portswood Road, Southampton, SO17 2NF, 02380 584 088, admin@southamptonmencap.co.uk
• National Autistic Society South Hampshire Branch
• NXT
• Music Fusion
• Newbold Hope
• QE2 Activity Centre
• ReMinds
• Reach Out Caring Adults With Learning Disabilities (Fair Oak Farm)

Download our poster for professionals here.

Social Worker – Hampshire County Council

“I would love you to pass this onto your managers if possible so they know how amazing and what an impact you have had for the family we have worked together on. Before the Keyworker came on board, I was having to try and overcome big barriers between different professionals and settings in order to get the right support for the young person. They have made the connecting bridge between all professionals accessible and possible. They have been available and supportive towards myself as a professional giving me guidance and ideas to use with the young person, but also giving this and their time to the family in order to help them make progress and prevent the child from being admitted to hospital. The Keyworker has chased the professionals they have needed to and got positive results, e.g. the young person has not been to their educational setting for over 3 years, they have not put anything in place instead, but the Keyworker has managed to get this sorted and as of September the young person will be able to access 3 activities off site a week! The Keyworker has managed to speak with SEN team and get things in place for the young person. The family have been grateful to have them on board and feel that a lot of stress has been taken from them and they are able to put things in place to help the young person at home. The Keyworker has been a big support for them and a breath of fresh air with new ideas for them to try, but has supported to put these in place too. They have been a big help and an amazing asset to the young person’s professional network and I need you all to know and understand how grateful we all are for her support and work.” 

Children’s Continuing Care Clinical Lead

“I recently met with a Keyworker regarding a young person we are both working with at the moment and it was really evident that they have gone above and beyond to support this family. Their passion was really shown through the conversation. They clearly have incredible knowledge around ASC and applies this knowledge to their practice (by even ensuring they wear the same clothes & scent on visits).”

Learning Disability and Autism Programme (LDAP) Lead Practitioner (adults)

“I wanted to give you written feedback about the keyworker programme so far. It has only just rolled out into adults, and so I have not had much involvement with the programme yet. However, the was a recent transition case, where a young lady had just turned 18 and was transferred over to our Adult LDAP team as she was an inpatient. We had a handover from the CYP team and received some information. However, usually, when we add them to care track, we have no existing information to go by and often have to start case management from scratch. 

In this instance, it was so very helpful to log on to the lady’s record on care track and see so much information from her allocated keyworker, clearly explaining the situation and who was already involved and in what capacity. 

This has been a clear example of how the keyworker programme has improved the care and support for our young people from a case management perspective, and really helped with consistency and oversight.”

Childrens Commissioner 

“I am in Clinical Activity Panel and Consultant Paediatrician for QA has just made a lovely comment about the impact of the Keyworker Programme supporting a young person whilst she is stuck on an adult ward. Really helping with strategies and the communication.

This is a very challenging environment and complex dynamics, well-done”

Parent’s feedback

“In terms of working directly with S, this has never been successfully implemented before but, because of S’s complex needs and the level of attention he requires on a daily basis, we have been desperate for this kind of support. However, anyone involved directly with S needs to have a really solid understanding of his needs and particularly the risks, due to his susceptibility and emotional dysregulation; these are not obvious and require the person working with him to be able to ‘read between the lines’ at all times and understand the level of impact that their interactions with S can have on him. With this in mind, I cannot exaggerate my sense of relief at having S’s keyworker because they get it! They fully understand the risk involved with supporting S, the nature of his PDA profile (most professionals aren’t even aware of PDA, let alone how to support someone with this presentation, so this on its own had a huge impact on my confidence in our Keyworker) and how to best interact with S in order to build a trusting relationship with him, which is absolutely crucial!

In addition to the above, our Keyworker does what they say they will do; this might seem trivial, but it is not! As a parent of children with additional needs, having complete confidence in someone makes a tremendous difference to me, allowing me to have peace of mind and increasing my capacity to be there for all of my children when they need me. Their role in coordinating support – not just for S, but for my other two children as well – is something I really value, too. There is always lot to coordinate, in terms of meetings, information-sharing and consistency among professionals working directly with S, and I feel like a significant amount of this work has already been taken off me, which, again, has such a positive impact on my state of mind.

I would also like to comment on the positive relationships they are building with S’s siblings. They always make time for each of them, to listen to them, spend time with them and take into account their needs and how they can be better supported. In meetings, our Keyworker advocates for all of them, as well as us, as a family unit and I am delighted to have their involvement in our various meetings.

In conclusion, I honestly could not find anything remotely negative to say about the Keyworker Programme because our experience so far has been so positive. We are extremely fortunate to have S’s keyworker and having them on board has renewed a sense of hope for our family’s future.”

Parent’s feedback

“Our Keyworker has given us back a little hope. They have been empathic, caring and informed. They are managing many of the tasks which we are too exhausted to pursue and their knowledge of support options is excellent”

Parent’s feedback

We have only received good and positive support from our Keyworker. When they first came on board M was still in hospital and it was extremely helpful for us to have someone build a plan for M when they came home. We also felt that our Keyworker was a real advocate for M when they were in hospital and for us as a family. They have taught both us, and M, more about what services are out there for autistic children and about autism in general. For example, we didn’t know anything about the benefits M can claim, or much about EHCPs. As parents we sometimes find the area quite overwhelming therefore it’s very reassuring having someone we can contact as we didn’t have this when M was in hospital, and we felt very lost. Our Keyworker has been an invaluable support to us all, as a family, in a very stressful time, we cannot praise the services, and our Keyworker, enough.

Our Keyworker regularly takes M out where they can chat about anything they want to and feels in a safe space to chat about anything that is bothering them. They advise M about services out there for autistic children in an education or social setting. They are also helping M make contact with other young people and groups which may interest them. They are helping them begin college and start building evidence for an EHCP. They also helped the process from M leaving hospital to coming home.
 

Here is the story of how this team has changed one young person’s life, and that of their family, for the better, in their own words: 

“I am a young, autistic person with other complex conditions. Life has not been easy. For years I’ve struggled with friendships, social interaction and have been in and out of hospitals for an eating disorder. I found this extremely difficult to deal with, the trauma is something I think about almost daily.

“Throughout my life people have tried to help, but nobody seemed to understand me or what I what I was going through. It made me feel like an outcast, like nothing could ever get better and that there was something majorly wrong with me.

“I have struggled with self-harm for six years. I use self-harm as a coping mechanism and for release of built-up emotion and stress but the feelings of stress and emotion always comes back, leading me to self-harm again. As a result of this sometimes I end up in hospital needing stitches.

“My mental illness has led me to do many things such as drinking perfume, hand sanitizer and alcohol to get drunk. For me, getting drunk numbed everything I was going through. 

“I’ve had a keyworker for around five months, and I’ve noticed such a positive change within myself and my behaviours. We meet up weekly and we talk for about an hour/hour and a half. My keyworker listened to me and understood me, someone who actually offered me advice and help.

“She helps me see things from a different perspective, my previous coping mechanisms have been replaced with healthier ones which offer me a way to deal with my emotions better. My attendance at school has improved greatly, I’ve been engaging with therapy, I’ve been able to open up much more and my social skills have improved.”