Issues tracker

Issues raised by parents and carers

The Leeds Parent Carer Forum and Voice, Influence and Change Team (LCC) work in partnership to raise the issues and challenges faced by parents and carers of children with special educational needs and disabilities in Leeds across education, health and care. 

The issues tracker is a mechanism to log the issues raised by parents, carers and support groups against the local authorities and health responses and future plans to address the issues. 

All issues and challenges raised are shared with the Voice and Influence Transparency Working Group and subsequently with the Leeds Area SEND and AP Partnership Board. 

The Leeds Parent Carer Forum also share issues raised on the boards and meetings they attend across the local authority and health. 

If you have any further questions about the issues tracker please email LLO@leeds.gov.uk 

Parents and carers issues tracker

SEND Transport – home to school transport

What families have told us
  • At the start new school academic year the home to school transport causes a lot problems for families i.e. transport not turning up, families not knowing what is happening etc. 
  • Transport feels at arms length to provision / school. Families should receive information about home to school transport as soon as they are offered a place at a school. 
  • There is a lack of flexibility with transport if a child is on shorter or longer days, and is not available during transitions.
  • Not always a designated driver, can be a different driver everyday. 
  • Doesn’t cater for split families, and only pick up from one address. 
  • Families are not aware of the process for cancelling transport etc.
  • Need a user friendly transport application form.

 

The local authorities and health’s future plans 
  • Leeds City Council’s transformation team will be conducting a review of Children’s Transport. 
  • The Leeds Parent Carer Forum involved in meeting with Cllrs and reps from LCC’s Children’s Transport team. 
  • Further training and input to ensure that the health needs of children and young people who have SEND are met while they are supported by the escorts in the transport team.

Social care: Transitions

What families have told us
  • Families not understanding what support is available when a child transitions to adulthood across education, health and social care.
  • Transition supported should be planned and actioned. 
  • Support, information and resources for all key stages of transition. (primary to secondary, secondary to post 16, post 16 to next steps).  
The local authorities and health’s future plans 
  • It is a statutory requirement of SENDASS to provide transition information, advice and support to families. This is currently not being carried out by the team due to capacity. The SENDIASS Coordinator has put together a business case to request more capacity within the team. 
  • Further promotion and work with schools from our Learning Inclusion Service to promote transitions resources available, and identify gaps in support, training and resources available. 
  • Through workforce development working group identify ways that third sector providers can be supported to deliver transition processes more effectively.
  • Develop and embed a transitions policy into Adult Health Services and to develop a comprehensive pack of information to be shared with young people approaching Transition.
  • Increased offer of Supported Internships.
Updates

The Leeds Parent Carer Forum and Leeds City Council have reviewed and updated the preparing for adulthood transitions information on the Leeds Local Offer website to ensure families are clear of the support available to them. 

The gaps in transitions support is being raised at the Leeds Area SEND and AP Partnership Board in December 2024. 

 

Social Care: support for adoptive parents / carers

What families have told us
  • The support for adoptive parents of children with SEND isn’t clear. 

The Leeds Parent Carer Forum to will be speaking to adoptive families to find out more information about the issues experienced around support (July 2024).  

The local authorities and health’s future plans 

Information will be updated in due course. 

Health: waiting lists for diagnosis and support

What families have told us
  • The waiting lists continue to be extremely long, and families are not getting the support they need. 
  • The delay in diagnosis can affect self esteems and prevent children from learning. 
The local authorities and health’s future plans 
  • As the health issues are a challenge to the health system and will not be fully resolved easily, the Leeds Parent Carer Forum and the Designated Clinical Officer will review regularly and provide updates.
  • Additional funding for CAMHS to increase capacity.
  • 3 additional Occupational Therapists to increase capacity and reduce waiting times.
  • CAMHS are looking at a full service redesign. 
Update (December 2024)

The Leeds Parent Carer Forum and Health colleagues meet on a monthly basis to feedback parental voice and views. As part of these sessions we have themed updates where services from across Health are highlighted and discussed. More recently we have had updates regarding the following services. If these could be helpful to the families you are working with, please pass this information on or reach out directly to the service provider. Thank you 

Health: sleep and melatonin

What families have told us
  • Scope sleep service is no longer available to families. What support is available for families? 
  • Children not being prescribed melatonin, and no increase in dosage for those already prescribed. 
The local authorities and health’s future plans 
  • As the health issues are a challenge to the health system and will not be fully resolved easily, the Leeds Parent Carer Forum and the Designated Clinical Officer will review regularly and provide updates.
  • Development of pathways across services to deliver offers for behaviour, eating, drinking, nutrition, continence and sleep.

Health: hydrotherapy

What families have told us
  • Parents been advised by professionals that Hydrotherapy cannot be documented as a support option as there no services available in Leeds.
The local authorities and health’s future plans 
  • As the health issues are a challenge to the health system and will not be fully resolved easily, the Leeds Parent Carer Forum and the Designated Clinical Officer will review regularly and provide updates.

School attendance: education other than at school (EOTAS)

What families have told us
  • Parents and carer are increasingly having to give up work to support their child at home as they cannot attend school due to school not being able to meet their needs. How do families challenge this? 
  • LA not supporting EOTAS packages and naming them in EHCPs. 
  • There is no support for families wanting to undertake the EOTAS package. 
The local authorities and health’s future plans 
  • The Educational Psychologist Team set up a working group with representatives from across services to consider service perspective and understanding. The working group will be looking at two areas: resources for schools and parental support / guidance. 
  • The Educational Psychologist Team have consulted with the Leeds Parent Carer Forum, to look at attendance barriers and what support can be developed for parents. 
  • Resources have been developed by the Educational Psychologist Team for school staff (and professionals) provide support with attendance. 
  • The Educational Psychologist Team have a central training offer to school staff and wider professionals on ESNA and how to understand and support the needs of C&YP and their families.
  • Work and consultation with families to find creative solutions to ensuring schools, settings and appropriate provisions are in place. 
  • The Voice, Influence and Change Team to explore how the voices of elective home educated and those in education other than at school are gathered. 

School attendance: extended school non-attendance (ESNA)

What families have told us
  • Children and young people are unable to go to school for a range of reasons, this may be due to anxiety.
  • More children and young people are being given part time timetables.
  • There is increased reports and concerns in relation to ESNA. 
  • Parents and carers report having to give up work to support their child at home. 
  • Not all children and young people have EHCP’s. 
  • Parents and carers have fedback a lack of understanding and/or support from school.
  • Families do not feel they are receiving support around exclusions. 
  • There has been a rise in families of children and young people who attend mainstream schools contacting the SILC Cluster.
The local authorities and health’s future plans 

Whilst our Area Inclusion Partnership (AIP) and Alternative Provision (AP) model is a strength within Leeds there are plans to review our approach to devolving funds to partnerships of school leaders in AIPs, responding to the national focus on the use of AP and enabling them to co-design an offer of inclusion support and alternative provision that reflects their local area’s context and needs. We are aware there are too many children within AIP settings that require more long-term support and AIP provision is not always been seen and used as an intervention. In addition, we have plans to develop a guidance document for schools and commissioners outlining the LAs guiding principles for alternative provision and emphasising the school responsibilities in relation to alternative provision. E.g., exit planning; expectations on use of provision maps, integration with Fair Access Panel; how to record in their school registers to improve data available in School Census and implications for CYP with EHC Plans.

Continued identification of where new specialist provisions can be established in within existing settings and continued expansions where able with our established SILC provisions.

 

  • A focus on attendance from our SEND teams when supporting schools and settings with individual case work.
  • Continued support from attendance team to improve attendance in schools and settings.
  • Review our approach to develop devolving funds to partnership of school leaders in AIP‘s enabling them to design an offer of inclusion support and alternative provision that reflects their local areas context and needs.
  • Guidance document for all schools/commissioners outlining the LA guiding principles for arranging AP and setting out schools responsibilities in relation to AP.
  • Health to be involved in the planning and development of Specialist places.
  • Review of AIP Offer -  strengthening the LA tracking of young people who have previously attended AP, destinations and end of KS4. Developing the monitoring of current attendance, length of time in AP, exit destinations. Providing models for schools to evidence the intervention plans for all pupils accessing AP.

Education, Health and Care Plans

What families have told us
  • Application process not clear for families, and professionals not understanding the process. 
  • Long waiting times for assessment. 
  • Poor case worker communication. 
  • Case work officers lack of awareness of law and practice. 
  • Outcomes not consistent within EHCPs. 
  • Health and Care should be as equal as Education in EHCP’s. 
  • Children and young people are not involved in their plans and have a lack of understanding about them. 
The local authorities and health’s future plans 

Following an increase in demands on service and workforce challenges resulting in a drop in statutory performance, Leeds City Council commissioned a review of its current EHC assessment, plan and annual review processes to identify key opportunities for change. The review so far has highlighted areas for improvement in relation to the Council’s communications, processes, support provided and consistency in approaches.

Our aim is to implement changes and improvements, to help the Council achieve its vision, that children and young people in Leeds with SEND, have the best possible start to life and equal opportunities to learn.

The Children and Families Department will keep you updated throughout the process and this webpage will serve as an information hub about the changes.

https://www.leedslocaloffer.org.uk/education/send-and-inclusion-transformation 

  • A review of end-to-end funding and assessment processes to decide how inclusion funding is issued in the future, in order to ensure legal compliance and move away from the existing dual process for assessment of need. With a single process for assessment of need agreed. Implementation of a new operating model and a transition of people and teams into new functions is predicted and will release capacity through improvements to technology and process, to enable a focus on value-adding effort.
  • Investment in Educational Psychologists capacity.
  • Additional capacity in SENSAP team.
  • Embedding of Moderation process and scrutiny of EHCPs to ensure quality.
  • Additional capacity within health to ensure timeliness and quality health advice for statutory assessments.
  • SEND transformation programme to ensure timeliness around statutory assessments and annual reviews.
  • Work to support join up between PEPs and EHCPs.
  • Move towards a needs led approach rather than diagnosis.
  • Bringing together EHCP and funding processes through SEND.
  • SEND lead and SEND Coordinator employed by health to improve timeliness and quality of health advice for statutory assessments.
  • Multiagency audits and identification of where processes can be improved across services for earlier identification of need.
  • Further development of processes for electively home educated young people with an EHCP.

Preparation for adulthood: information and provision

What families have told us
  • There is no preparation for adulthood for children who are highly anxious. 
  • Lack of post 16 provision. 
  • Careers advice given in schools but families not aware of the options available for their child.  
The local authorities and health’s future plans 
  • Ensuring there is an emphasis on PFA throughout all the identified workstreams.
  • Further promotion from One SEND teams of our locally developed PFA resource and certificate.
  • Continued collation of voices of YP and their families through the SEND Employment forum.
  • Build on the work implemented by the Employment and Skills team – continue to run SEND Next Choices Events and gain feedback from CYP from SEND Employment Forum.
  • Working with Lighthouse Future Trust and Post 16 Settings to increase the offer.
  • Virtual School/Care Leavers Service EET Panel and EET Surgeries to provide a problem-solving forum to explore Education, Employment and Training opportunities for all care experienced young people but in particular those with SEND.
  • 14-19 Strategic Partnership SEND action plan delivered upon which seeks to address the challenges faced by SEND young people linked to their post 16 EET progression.

Training and awareness: Professionals’ knowledge of SEND services

What families have told us
  • SEND training for school staff.
  • Professionals knowing about all SEND services – families find this isn’t always the case.
  • Families receive different messages about service depending on who they speak to i.e. GPs, schools etc. 
  • Awareness of masking and need to reduce parent blame.
  • Professionals get training, but doesn’t always reflect in practice. Systems don’t always cater for the wide range of needs. 
  • Professionals to show understanding and empathy to families. 
  • SENCOs lacking in knowledge. 
  • Health staff require knowledge of SEND systems and processes. 
  • Professionals to listen to families, and not ‘parent blame’. 
  • Training should be led by people with SEND / lived experience. 
  • More knowledge and understanding of the Child Friendly Leeds 12 wishes. 
  • Lack of neurodivergent expertise within leadership.
  • Training for all services not just SEND i.e. housing. 
The local authorities and health’s future plans 

SENDIASS to be the first point of contact for young people, parents, carers and professionals about education, health and care processes and support available.

  • Through workforce development workstream ensure those across the partnership are aware of the Graduated Approach.
  • Plans with health to co-produce a training framework with the Parent Carer Forum and Learning Inclusion Service, aiming for alignment with the planned release of a national SEND training framework by NHSE.
  • Working groups as identified in overarching plans – Joint commissioning, ND and mental Health, VI and transparency, data and intelligence.
  • Themes from SEND audits around partnership working and planning addressed through working groups.
  • CPD through the workforce development group for staff across the partnership to embed Leeds Practice Principles beyond Social Care.
  • High support and challenge to our third sector EY settings to ensure inclusive practice.
  • Support from SEND Teams to schools and settings to support early identification and graduated approach to meeting need.
  • Development of the workforce to ensure that families are involved in decision making.
  • Refresh of Best Strat Plan.
  • Continued support and offer from SEND Teams and learning Inclusion to support inclusive practice in schools.
  • Continue to embed practice around being a trauma informed city  - joint funding for  initiatives designed to improve the wellbeing of children, young people and families in Leeds.
  • Ordinarily Available Toolkit developed so all schools, settings and other services across the partnership are clear on what inclusive SEND provision looks like.
  • Planned work in partnership between the LCH occupational therapy team, SENIT team and SENCos in mainstream schools - seeking to establish a system-wide approach to sensory differences with a clear offer at universal, targeted and specialist support.
  • Leeds City Council’s workforce development team are developing a level 1 basic SEND awareness universal package of training for children and families staff. The Leeds Parent Carer Forum will be involved in proofing the training before it is launched. 

Training and awareness: Terminology used by the Local Authority, schools and parents.

What families have told us

Some families have told us:

  • A setting can be neurodiverse - having different neurotypes - as long as it isn’t, say a setting just for Autistic child or young person. Then it would be a setting for Autistic children and young people. 
  • A person can be neurodivergent - having a neurotype which differs from the majority. 
  • A person cannot be neurodiverse. 
  • Most mainstream schools are neurodiverse with a proportion of neurodivergent children and young people. 
  • Most mainstream schools are neurodiverse with a proportion of neurodivergent children and young people.
The local authorities and health’s future plans 
  • The one SEND team inclusivity working group are completing a focused piece of work around language and terminology. 
Updates

Information advice and support: information about SEND services

What families have told us
  • Advocacy for families attending meetings with schools and SEND services.
  • Support for families to navigate SEND services and not just signpost. 
  • Sharing information about SEND school support with families.
  • Information about youth groups and activities available. 
  • Groups to support siblings. 
  • Language and culture barriers when communicating with families. 
  • Families continue to receive mixed messages depending on who they speak to. 
  • Too many over lapping services which makes it hard to navigate the system. 
  • Language used can be quite clinical and difficult for families to understand, especially when English is not their first language. 
The local authorities and health’s future plans 
  • A new Leeds Local Offer website was launched in April 2024 based on feedback from families www.leedslocaloffer.org.uk 
  • The Leeds Local Offer information booklet has been updated (October 2024) and can be downloaded here.
  • The Learning and Inclusion one SEND service are developing an ordinarily available toolkit to outline to schools and families what they can expect from schools and what to do if this is not happening. SENDIASS and the Leeds Parent Carer Forum will be involved in the developments. The toolkit will be made available on the Leeds Local Offer website. 
  • Continuation of SEND Navigator Pilot.
  • Officers challenged and supported through supervision processes in respect of communication with families.
  • Early communication group and offer of additional support whilst families wait for SALT assessments.
  • Continued engagement with children, young people and their families to ensure voices are heard and used to inform plans and service offer.
  • Additional capacity at the front door in terms of Early Help provision. 

Information advice and support: mental health support

What families have told us
  • Adult mental health support not appropriate for young people with autism. Support needs to be tailored to the individuals. 
  • Mental health support for parents and carers. 
The local authorities and health’s future plans 
  • Review of MindMate SPA.

Information, advice and support: families where English is a second language accessing SEND services and information

What families have told us
  • Families where English is a second language struggle to access SEND services and information. 
  • Families cannot always read written information and require it in a different format. 
The local authorities and health’s future plans 
  • SENDIASS, the Leeds Parent Carer Forum and the Leeds Local Offer are exploring ways to ensure information is accessible to all families.