Our Voice Parent Forum Progress Report – March 2009

1. Our Voice Parent Forum Progress Report – March 2009 ‘I believe that professionals go into the caring professions because they want to help us and then they find that they have to defend a system that they have no control over. I feel like the system plays us off against each other and makes us enemies and wastes all our energies. But professionals are our natural allies and when we work together we are very powerful.’ Parent

2. Content • Purpose • Background • Approach • Parent perceptions – What is working well and what needs to change in Education, Health, Housing, Social Care and Leisure • The Forum • How the Forum wants to work with service providers • Summary

3. Purpose The purpose of this report is to provide an up-date on Our Voice’s progress in formalising its position as a Parent Forum by: 1. Providing a summary of parents’ priorities for service improvements in terms of; • Education • Health • Housing, Social Services and Leisure 2. Summarising how parents would like the new Our Voice Parent Forum to operate 3. Making recommendations for Joint Working (parent participation) between the new Our Voice Parent Forum and service providers.

4. Background • Enfield’s Joint Service for Disabled Children, Enfield’s Parent Partnership Service, Enfield National Autistic Society and Our Voice were successful in securing a bid for Our Voice to formalise its position as a Parent Forum under the Government’s Aiming High for Disabled Children agenda. Our Voice was awarded the full sum of £3300 for January to March 2009. • Aiming High for Disabled Children aims to ensure that in each local area parents are involved in strategic decision making about the provision of services that their disabled children need. • Involving parent carers at all levels of planning and developing services is the best way of creating cost effective and responsive services that work for families.

5. Approach - overview 3 Phases Phase 2 May/June/July Phase 1 February/March/April Phase 3 September onwards Create/Establish *Joint working with Services to agree parental involvement on priority decision-making bodies *Database and newsletter *Develop Parent Forum - remit, operational agenda, two-way communication *Appoint and train reps Develop *Establish Regular Meetings with Service Providers *Review Effectiveness *Lobby for change where appropriate *Develop one-stop shop web-site *Fundraising Consult with parents *Registration forms and Our Voice information sent to parents of children with Statements/Number on School Action Plus *3 Parent meetings to assess priorities for change and ideas for the Forum

6. Current parent perceptions • Overall, parents feel that they need to fight for everything for their child – education, heath, social care, housing. They feel they find out more from other parents than professionals. • There is some cynicism and lack of trust, particularly around mainstream parents and their perception of SEN services. Note, at the time of this report the majority of parents we have spoken with have children in mainstream provision. • It will be important for Our Voice to motivate parents to become involved with the Forum. We need to ensure that their involvement in consultations and training and at decision-making levels really makes a difference. This will be achieved with support from service providers enabling parents to influence a few quick wins ie where they are listened to about a specific issue that needs to change and then that change takes place quickly.

7. What did parents tell us? – What is working well? • Services cited as good were: • Pre-School Support • Capag and Cheviots holiday schemes/Activenture/Cross Roads • Tiger Team • ENAS • DAZU • SALT • Jo Atree, when available • Transport – this was considered vital by most • After-school clubs • LDA funding for child care

8. What did parents tell us about Education? • Parents felt particularly strongly that whilst Education was arguably one of the most important aspects of their child’s future, this was the biggest area of concern. Again, a reminder that the majority of parents at these early meetings (February and March) had children in mainstream schools, although there were a few in special or pre-school. Issues were particularly focused around: • SEN Services and their decision-making process, concerns about the Panel process. • Statementing process complicated with a lot of bureacracy and too many reception age children with high level needs in school unsupported. Attending only half-days against parental choice. • Mainstream SENCOs and staff often lack understanding and empathy. Don’t offer sufficient relevant information.

9. What did parents tell us about Education? (cont) • Mainstream school rules/polices at odds with child’s particular needs and could be unlawful such as nappy changing and food warming. • Perceived need for training in alternative teaching methods appropriate for disabled children with a range of conditions. • Insufficient SALT input. Parents and schools complaining about this yet SEN services saying that SALT provision in Enfield is not perceived as a problem by schools and parents generally. • Lack of real action to prevent bullying (other than policies on paper). • Lack of support and information during transition phases (pre-school to primary, primary to secondary and secondary to college/adult services). • Lack of education of young adults regarding such things as sex and relationships. • Need to promote more sharing of resources, skills and knowledge between special and mainstream schools.

10. What did parents tell us about Health? • Parents generally felt that when services were provided, these were good. However, parents cited a lack of resources and long waiting lists were real problems. Additional issues were particularly focused around: • Resources cited by professionals as a reason for poor service when it is often the case that a number of professionals chase up appointments and/or equipment and get back to parents and others do not. • Lack of understanding of dealing with children with disabilities in some general hospitals/GP surgeries/health professionals. • Cost concerns around car parking, particularly at hospitals (but elsewhere also) when there are a significant number of appointments. Insufficient number of blue badge bays. • Perceived lack of parental choice/control eg it is parents who suggest that a parent might want to get a second opinion or investigate an operation offered by a hospital, say Great Ormond Street.

11. What did parents tell us about Housing, Social Welfare and Leisure? • Parents being told their unsuitable accommodation is suitable for adaptation even when the family’s living room needs to be converted to a bedroom. • Need for a parent rep to sit on facilities grant decision-making panels due to limited number of children being dealt with under this system ie mainly elderly. • Lack of parental awareness about what social workers do. • Long waiting lists following assessments. • Lack of counselling and support/training for parents, the children themselves and their siblings. • Lack of appropriate leisure activities for 5-11s and young teenagers and adults. • Limited places in after-school clubs/holiday schemes.

12. Our Voice Parent Forum; Aims • Work with providers to improve services by via parent representatives sitting on planning and decision-making bodies, training professionals, interviewing key staff and responding to consultations. • Provide information & advice/support to parents (via professionals and trainers attending forum meetings), sign posting them in the right direction. • Providing support to complete applications and paperwork such as DLA, Statement process, Bus passes etc. • Provide training and counselling for Parents, siblings and disabled children. • Provide a social network for parents/siblings/disabled children. • Medium through which to reach Black and Ethnic Minority groups.

13. The Forum; Structure & Meetings • Parent Representatives on Enfield Service Provider decision-making bodies (e.g. SEN Panel Review Group, SEN Inclusion Strategy Group, ESWRAP, Children’s Trust) • Termly Parent Forum meetings where issues raised are noted for reps to take to decision-making bodies • Coffee mornings, work-shops, guest specialist speakers/advisors • Creche facilities for parents to be able to attend above meetings • Councillor surgeries/Joint Service surgeries • Reps at SENCO meetings • Fund raising events • Organised trips

14. The Forum; Communication • Create an up to date website/ one-stop shop • Newsletter via mail and email (once a term) to feedback on developments lobbied for by the Forum as well as othrr local information • Chatroom/message or information board • Email information/flyers • Meetings during school hours and evenings • Provision of leaflets and brochures on services and benefits

15. How Our Voice wants to work with Education • Parent Representative on SEN Panel Review group and on SEN/Inclusion Strategy Group. • Training SENCOs and professionals in inclusion, disability awareness and how to work with parents. • Responding to consultations. • Creating opportunities for parents to attend meetings with SEN services staff. • Enabling a reduction in unnecessary tribunals by encouraging a transparent decision-making process, more face-to-face communication, and eliminating potentially unlawful practices. • Working with Special and mainstream schools in terms of sharing resources with schools and parents.

16. How Our Voice wants to work with the PCT • Parents sitting on Children’s Trust and PCT boards. • Lobbying for funding for OT (via Councillors?). • Training health professionals, Local hospitals/GP surgeries etc in disability awareness (Model Pre-School Support and Jo Attree approach). • Inviting specialist speakers to Our Voice meetings to enable them to see several parents at one time rather than individual ways of communicating advice eg talks on continence, manual handling, challenging behaviour. • Look at ways of improving parking at hospitals for parents of disabled children and of fast tracking children who attend too many appointments, at GPS, A and E etc.

17. How Our Voice Wants to work with Housing, Social Services and Leisure • Parent reps to sit on decision-making bodies for example transition planning, commissioning groups, bodies relevant to housing disabled children, facilities grant panel and so on. • Training professionals re issues affecting families of disabled chdilren such as the facilities grant assessors. • Recruiting key staff. • Involvement in commissioning and with providers to ensure schemes are suitable for a range of disabled children • Working with services to streamline systems to ensure parents receive a quality service within given resources. • Ensure parents can contact service providers directly via e-mail rather than relying on an “old-fashioned” system of one number suits all.

18. Summary Progress to March 2009 As at March 2009 we have a database of 250 new Our Voice Parent Forum members plus at least 100-150 existing ones that will still need to sign up to the new Our Voice Parent Forum. We have met with in excess of 40 parents via three meetings to explain what parent participation is all about including providing information about the impetus from the Aiming High Agenda and models of good practice from other boroughs. We have used those meetings to find out from parents what the priorities are in terms of service developments, how they want to forum to operate and whether they want to volunteer any support. We are meeting parents in special schools during April and May. EDCM have asked us to track short breaks for the next three years, SEN have asked us to comment on a leaflet around transition Working on next newsletter, website and recruiting new Development Coordinator IPSEA workshop .

19. Summary (cont) Aims for April to July 2009 • Agree at least three panels that parent representatives can sit on from SEN Inclusion Strategy Group, Panel Review Group, Children’s Trust and relevant Social Services, Housing and PCT ones. • Parent Forum meetings with special schools during April and May and a meeting for all parents in May/June to report progress. • Hold a joint meeting for parents and professionals to launch a joint commitment to parent participation. • Agree process for enabling parents to be involved in training professionals. • Seek support from Service providers for the Forum via office systems, space, meetings rooms, admin support, stationery, equipment or financial. • Agree bid for 2009/2010 with partners (ENAS, PPS and Joint Service).