We recently held drop-in sessions for parent carers focusing on early years, post-16, and the neurodevelopmental pathway. It was an opportunity to share experiences, provide feedback about what is going well or not so well, and generally have a chat in a supportive and understanding space.
Read on to see the main topics which came up at the different sessions.
Early years services and support
We held a drop-in session for parent carers to come and share their views and experiences of early years support and services. This is an area where we identified some gaps in the amount of feedback and engagement we’ve had with families, so it was great to focus on this phase and hear from parent carers directly.
There were some clear messages which emerged from the discussions:
Clarity about pathways for early years support
More information is needed on the Local Offer about what different pathways mean and what happens when you are ‘on’ them. It can be difficult to understand the system – “it feels like a maze” – particularly when a family is in the early stages of needing support and information.
Clear & accessible information about points of contact
As above, parent carers said they are unclear on where to find information. For example, who to speak to about the referral process for diagnosis if nursery does not support it.
Quicker, more streamlined processes
EHCP (education, health, and care plan) processes can be incredibly lengthy. One parent carer reported that their child, who is currently at nursery, is unlikely to start school in September because the EHCP process has taken so long and nothing has yet been finalised.
Transition from nursery to primary school
More information is needed about what to expect during the transition phase from nursery to primary school. What can parent carers ask for? What are nurseries and schools required to do? How much is dependent on where the child is on the pathway for a diagnosis?
Consistent information from service providers
One parent carer reported receiving conflicting messages from different teams within the local authority.
Help to cope with behaviour that challenges
A parent carer shared that they were struggling to access any support for their pre-school child who is showing behaviour that challenges. They are worried about the impact of the change in routine during the summer holiday and the lack of SEND (special educational needs and disabilities) clubs available.
Transparency about funding for support
How can parent carers find out more information about any funding which has been allocated to support their child? Several parent carers said they were not clear about what exactly the funding was for, and who they could speak to about it.
Post-16 services and support
It was good to meet with the parent carers who joined our drop-in session on post-16 services and support. We have heard before about problems facing this age group and it is clear there are some concerning themes:
Lack of provision
Lack of provision for young people who are academic and have additional complex needs.
This is a major problem for those aged 16 and above. The requirement to provide transport has not been updated since the change of legislation was introduced which now requires young people to continue in education, employment or training until the age of 18.
This is severely lacking and would in some instances help alleviate the above problem.
Mental health support
Many young people with SEND (special educational needs & disabilities) have experienced a disrupted education and as they mature can become more aware of how the system has let them down. Depression and mental health problems are often intensified by the acute lack of mental health support and this can mean young people find it difficult or even impossible to engage and participate with provision, or even with everyday activities.
Quality of EHCPs
EHCPs (education, health, and care plans) are often not updated and do not accurately reflect the support a young person needs. This has resulted in colleges/provision offering a placement which then breaks down as needs cannot be met.
These are just a few examples of the difficulties faced by young people with SEND with too many of them finding themselves without education, employment or training. The forum’s view is that this is not talked about enough and is not the priority it should be. We are gathering as much information and evidence as we can and plan to raise this with the local authority in the new academic year.
The neurodevelopmental pathway
This drop-in session was an opportunity for parent carers who were unable to attend daytime events to come along and ask questions or share their experiences about anything to do with the neurodevelopmental pathway. It ended up being a valuable space for parent carers to share their personal stories and ask for information and support.
A lot of the issues raised are mirrored in the feedback we hear regularly from families as part of our work on this topic. Over the last year, ESPCF engagement workers Karen and Serene have been out and about hearing from parent carers to identify what families need in terms of support and information. There have been some loud and clear messages coming through:
Long waiting times
Many families are frustrated by long waits for assessments and diagnosis and are often unable to get through to speak to staff on the phone and are not kept informed. The long wait often means having to re-do long forms as circumstances change.
Lack of understanding
There is a lot of feedback saying that parent carers are not given enough consideration of their knowledge and experience – there is little empathy for parents and no understanding of the demands on families. One parent commented, “I feel we have to diagnose our children ourselves and then fight to get this recognised”.
Isolation, information and advice
Some of the parent carers who came along to visit Serene and Karen over the last year spoke about how isolated they had felt and had not previously been aware of where and how to get information and advice. Even those who have not felt isolated have told us how difficult it can be to navigate a complex system of where/how to access support. It is often unclear and confusing.
All the feedback we hear contributes to the development of the Amaze NDP Family Training and Navigation Service. It also provides evidence of real-life experiences to the professionals who lead on neurodevelopmental services. We’ll be continuing this work in the coming weeks and months, so keep an eye on our social media pages and our email updates for news of where we’ll be.