Greenwich Parent Voice will be taking a group of twelve parents to the House of Commons for a private meeting with Matthew Pennycook, Member of Parliament for Greenwich and Woolwich and Teresa Pearce, Member of Parliament for Erith and Thamesmead. They will be telling Matthew and Teresa face-to-face what support parents and carers need to ensure the best possible life outcomes for their disabled children.
GPV asked SENCOs (special educational needs co-ordinators) in every school in Greenwich to nominate a parent who would like to meet their MP. Twelve parents from were chosen from this group at random and each was asked to contribute to an agenda of discussion points covering education, health, social care, housing and employment.
The diverse agenda covers issues ranging from the need for teen areas in paediatric wards in hospitals, to the introduction of Autistic Spectrum Disorder training for all teaching staff in schools. GPV will also be asking for MPs to support a new ‘Disabled People Community Inclusion Bill’ (LBBill). This draft bill aims to give disabled people new rights to make meaningful decisions about where they are living and how they are to be supported. The agenda points are listed in full at the end of this post.
Joanne Delap, Parent Director of GPV said: “In this age of austerity and government cuts, it’s even more important for carers of children with special needs to make their voices heard. Services need to improve and our children must have the same oppotunites as their peers. This meeting is a fantastic opportunity for parents to speak directly to politicians and get their message across.”
After the meeting with Teresa and Mathew, parents will be given a special guided tour of the House of Commons followed by lunch together in Westminster, travelling back in time for the school run.
Summary of discussion points
1. The LB Bill is a draft bill, produced and developed by family carers, people with learning disabilities and professionals. We think the proposals in the LB Bill are well considered and would work to truly improve the lives of people with disabilities. We urge the Government to consider adopting the LB Bill.
2. There needs to be better training in schools for teachers to recognise the indicators of special educational needs, so that interventions can be made as early as possible. As ASD affects more than 1% of the population all teachers and teaching assistants should receive specific ASD training. We would like support from MPs for a new ASD Accreditation Mark programme for schools. This would especially benefit the increasing numbers of pupils with additional needs who do not qualify for guaranteed support through an EHC Plan.
3. With regard to the new EHC Plans and the implementation of the Children and Families Act, we would like to see efforts being made to ensure that the new systems are not used to reduce support for children as a way of cutting costs. Parents have to fight, sometimes harder now, for support for their children and to access legal safeguards for provision. The reforms were supposed to change this. In some cases the new system is being used to manage parent expectations down on what statutory entitlement, if any, their child will receive.
4. We believe increased funding is needed for SENCOs to enable them to manage their workload and be effective. Often they are working in part-time positions and find the volume of demands on their time overwhelming.
5. Key stage assessments should take into account specific learning difficulties such as dyslexia. For example at Key Stage 2 a dyslexic student is given no concessions in the spelling test.
6. More initiatives and greater support for children are needed post 16;once they leave school there is very little help for them socially or to find meaningful fulfilling employment.
7. There is a real need for co-ordinated diagnostic pathways that are standardised across all Health Trusts. At the moment many children are waiting months for a diagnosis and then once this has been made, even longer for support to be put in place. There is a lack of co-ordinated communication to parents or single entity responsible for communication across social care, health and education. Lack of support can push families to crisis point.
8. Speech and language communication therapy should no longer be effectively withdrawn at age 16. For children with lifelong communication needs this needs to be provided according to need, without age limit.
9. Hospitals need to recognise that it’s not appropriate for teens to be cared for in either the adult wards or with much younger children.Teens need special areas within paediatric wards.
10. More support is needed for parents wishing to explore alternative therapies and alternative strategies for their children, and more research funding for alternative therapies.
11. There needs to be a visible commitment to improve consistency of quality of services across Education Health and Social care. Quality of service is not a priority and varies dramatically. Managers need to be obliged to improve quality.
12. More initiatives and support are needed for siblings to recognise the impact on them of having a disabled brother or sister and the caring role they may have for life.
13. Every child with a disability should have access to an allocated social worker if they feel they need one.
14. New rights for blue badge holders are needed to access affordable spaces in new housing developments. Blue badge holders who are road tax-exempt (those who have the greatest physical difficulties) need to be given more privileges in the Blue Badge scheme.
15. Parents of children with disabilities need more support in the workplace if they are to balance employment with the demands of caring. Employers need to be encouraged to offer flexible working arrangements and carers should not be penalised when, for example, they have to take children to frequent hospital appointments or attend necessary meetings.
16. Single parents of disabled children who are earning above the threshold for carers allowance may also have a demanding care responsibility. They should be able to access financial support for carers.
17. We are looking for recognition that parent forums are being used as a free resource by the DofE to support the implementation of SEND Reforms. Forums feel exploited and overworked and this undermines their sustainability.
More information about the proposed Disabled People Community Inclusion BIll (LBBill)