Specialist respite services

One of the priority areas for ESPCF is around social care and respite for families with children and young people with SEND (special educational needs and disabilities). As with all our work, our priorities are based on feedback and experiences we hear from ESPCF members and the wider parent carer community. Read on for the latest update following our meeting with the Children’s Disability Service.

Earlier this year we provided an update on short breaks following our work with East Sussex County Council (ESCC) to try and bring improvements to their short breaks offer. That work did not include more specialist services such as overnight respite.

We then arranged to meet with the Children’s Disability Service after hearing from parent carers that more information is needed about the threshold for specialist services and if there are plans to improve and expand provision.

The Children’s Disability Service (CDS) is responsible for children who have severe and long-term cognitive delay and severe learning disability, low functional abilities and who may also have physical disabilities. It assesses children up to 16 years old, and their families, for social care support. It previously sat within ISEND (Inclusion, Special Educational Needs and Disabilities) at East Sussex County Council. This has now changed, and it sits within the wider social work service.

We met with the Head of Service for Children’s Locality Social Work Services, and with the Operational Manager for Children’s Disability Services to discuss where improvements are needed.

Gaps in services

There is recognition from the local authority of the gaps in specialist respite services and we were told that plans are being developed to rectify these. We were told that one of the priorities will be to reinstate overnight respite provision for severely disabled children where they and their families need that respite support. ESPCF will be following up for more detail and updates.

Regular respite

A review is currently underway to see whether dedicated places can be found that can offer regular respite support. The Children’s Disability Service is looking for an option that can be started quickly but that will also provide quality provision to meet the needs of children and families. It is hoped there will be an update on what can be provided in the next three to six months.

Threshold for support

Meeting the criteria for specialist respite in East Sussex does require the child or young person to have a severe learning disability with the threshold set at the ‘higher end of complexity and need’. ESPCF raised the concern that this excludes many families where a child or young person does not have a severe learning disability but has extremely complex needs that can have an exhausting impact upon the family. We will continue to highlight this and use parent carer voice to try to influence change.

New support service

There is a relatively new intensive support service called Connected Families. This has been set up to up to help support children and families who are struggling and where there is a risk of family disruption and a need for alternative care. We were told that Connected Coaches work intensively with young people delivering interventions to stabilise, reduce risk and enhance relationships. They also support families to navigate complex services and smooth pathways, focusing on helping families and young people to identify their own solutions and aspirations.

This service is open to disabled children who have been assessed at a *Level 4 continuum of need and a service can be provided whether or not the child has a social worker in the Children’s Disability Service. *East Sussex level 4 indicators are described here

Accessing this service needs to be via the East Sussex Single Point of Advice (SPoA). This is a combined front door for both Children’s Services and CAMHS (Child and Adolescent Mental Health Services) and the team consists of practitioners from across Children’s Social Care, CAMHS and Early Help. At the moment, we think the SPoA webpage is a bit confusing because it seems to be written only for professionals. However, anyone can contact the service directly. SPoA’s role is to look at all requests for services, including the needs of children and young people with social, emotional and mental health needs, whether requests are from professionals or parent carers.


Some review work is also taking place on how the Transition service works with Adult Social Care: whether they have the best model of how those two services interact and whether they are delivering that service in the right way. Parent carer views will be sought as the review progresses.

The review is expected to be completed by June/July and will incorporate an event for key partners, including parent carers, to feed back their views on what currently works well with children moving between the Transitions service into Adult Social Care, and what they would like to see improved.

Parent carer voice

The Children’s Disability Service has assured us they are keen to hear from parent carers and welcome ESPCF’s participation on projects as and when they develop. We have also agreed that ESPCF and the disability service will meet on a quarterly basis to ensure that dialogue is kept open and that information is shared.

We will continue to keep you up to date. Please do get in touch to share your views and experiences so we can represent these in our meetings in order to try and ensure these services can best meet the needs of local families.