ESPCF has published a report highlighting the difficulties that families who have children and young people with special educational needs and disabilities (SEND) often face when trying to access mental health and social care support, including overnight respite.
ESPCF would like to thank all the parent carers who responded to requests for feedback and shared their experiences.
The report looks at the Single Point of Advice (SPoA) service and explains what it is and which services can only be accessed via SPoA.
It concludes that:
- The local authority SPoA webpage is not at all helpful for parent carers. The webpage is not in any way user friendly and is commonly interpreted as the place to report safeguarding concerns. This is completely off-putting for families who can often see safeguarding as meaning a child at risk from their parents or other family members. Feedback shows that some families believe there is a risk that engaging with the service leads to ‘losing control’ of their family.
- The Sussex Partnership NHS Foundation Trust has a website for the East Sussex SPoA. However, parent carer feedback indicates that SPoA itself does not always meet the aims set out on this website.
- The Children’s Disability Service (CDS) criteria is very specific and does not offer support to families in need where the child/young person does not have a severe learning disability.
- ESPCF was told that families in need of social care support who do not meet the CDS criteria need to contact SPoA. However, for some parent carers this has not been at all helpful.
- Currently there is no single webpage/website that accurately explains which services can be accessed via SPoA and specifically which services can only be accessed via SPoA.
- ESPCF has on several occasions outlined these concerns and has requested precise information about when to use SPoA and asked that the local authority SPoA webpage is updated and made accessible.
- ESPCF parent carer feedback is varied on whether contacting SPoA has been useful, but even when it is, the criterion for support is high and there are gaps in services, leaving some families struggling and heading towards risk of breakdown. The information and signposting provided for those who do not meet the required criteria is not consistent and sometimes signposts families to services that have long waiting lists.
- ESPCF has repeatedly requested more information about what overnight respite support is (or should be) offered to families who do not fit the CDS criteria and has not had adequate answers.
- The feedback ESPCF has received from parent carers about the difficulty accessing support and services via SPoA is quite extensive and very concerning. The long waiting lists to access CAMHS (for mental health support and for neurodevelopmental assessments) are already well documented, but the data is lacking on social care support and services in regard to unmet need.
- ESPCF has raised concerns that there is a lack of discussion and data on those families needing respite who do not meet the CDS criteria. ESPCF has asked that this data is captured and acknowledged.
- ESPCF will continue to request information, to highlight the gaps in services, and try to influence services to meet the needs left by these gaps, and keep parent carers informed.
ESPCF has met with the professionals responsible for SPoA and associated services, and presented the feedback from parent carers, along with its conclusions. As outlined in the report, ESPCF still has concerns on behalf of SEND families which it will continue to pursue.