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Report from the Chairs
This is our first annual report since we launched SEND Family Voices by merging the Richmond and Kingston parent groups in October 2015. We are very proud of what we have achieved so far. Who we are SEND Family Voices is a parent/carer forum within the national network of forums, many of which have come into being a result of the 2014 SEND reforms. A parent carer forum is a group of parents and carers of disabled children who work with local authorities, education settings, health providers and other providers to make sure the services they plan and deliver meet the needs of disabled children and families. We are currently a steering group of 19 across Kingston and Richmond; we are all parents of disabled children or young people. Many of our steering group members are also part of other disability groups such as Express CIC (Autism), 21and Co (Downs Syndrome). We have deliberately set up the steering group as a “hub and spoke” model so that we reach as many families as possible. We are all volunteers. We are entirely independent of Achieving for Children and other local service providers; the majority of our funding comes from the Department for Education via the charity Contact a Family. We do however work in partnership with service providers such as AfC as we believe that this is the best way of driving improvement for families. We ALWAYS put the interests of the family at the centre of our what we do. What we do We provide information to our members on matters both local and national relating to SEN and disabilities – currently approximately 600 people directly receive our email newsletters plus many more via the “hub and spoke” We engage in consultation – We ensure as far as possible that consultation on important matters takes place (we push for this) and where appropriate we organise the process of consultation with families We participate in decision-making – we sit on many committees and boards as representatives of the parent voice. What we have been up to this year We have put a more comprehensive list of our activities in section E of this report; here we will mention a few highlights. We try to reach as many parents in the two boroughs as possible through our regular “Dear All” e-mail updates, through open meetings and through consultations. We also handle direct queries via e-mail and telephone – many hundred so far. We work with many professionals in the field, in schools, in other organizations such as RCVS, Healthwatch, the Clinical Commissioning Groups and of course at AFC. This year we put together key information on reasonable adjustments and on the SEND reforms. We led consultations on SEN transport and free schools. We worked with professionals, health, SEN and social care to create the local, definitive guide to the EHCPs and SEN support in our boroughs. We have taken the issues raised by parents via phone, email and face to face and anonymised and aggregated them into an issues tracking log so that we can best present what parents are really saying to local decision makers. We are
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educating local service providers about what co-production and listening to the voice of families really means. However, we still have much to learn about the best ways to work and to use the strengths of our group as there are many challenges facing young people with special needs, their parents and those that want to help them. We know that there are many issues, which demand more work: around cuts to services, around academies, post 16 provision, continuing problems with the implementation of EHCPs - to name but a few. Focus for 2016/17: Our goals and aspirations are to change the world for the families that have young people with special needs but in the meantime, here are a few key things that we’re planning to focus on for the coming year: Continue to try to improve the way that EHCPs and in particular Transition Reviews are handled Focus on the offer for post 16 – which is developing but is still problematic for many young people Continue to challenge and improve services (eg Educational Psychology, Occupational Therapy, Short Breaks) Continue to develop our reach so as to be more representative through improved website and social media and a continuing programme of open meetings and information events Help us: We are a charity and really need all sorts of help so if you have time or experience we can use please let us know. We work out of our homes and our meetings are often in people’s kitchens or dining rooms so we truly can use all the help we can get. If you have any interest in working with us, please get in touch! In particular, we are looking for someone with accounting skills and someone who would be able to help with admin (a small salary is available to pay for this). If you don’t have time to offer, then we are very happy to receive donations which we can use to create resources for parents and families. Thank you: Thank you first of all to all the parents, carers and young people who found time to come to our open meetings and consultations. We know how hard it can be to find time and transport to do that. Thanks to all of our steering group and consultation groups who have put their time, expertise and energy into creating policies, solutions and resources for our community. Thank you to all at AfC who have invited us into their meetings, made time to listen to our views and worked with us on many of the resources this year. Thank you also to colleagues within the CCGs and other Health organisation who have made us welcome as consultation partners. We also owe a debt of gratitude to many other voluntary sector organisations who provide information, support and resources to our community: Richmond CVS, KVA, Council for Disabled Children, National Network of Parent Carer Forums, Contacta-Family and IPSEA to name a few. We look forward to taking our work forward into the coming year and hope that many more families will benefit from the work that we do and perhaps become more involved.
Romany Wood-Robinson Chair – Richmond
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Caroline North Chair - Kingston
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A: Charity Trustees – who manage the charity Trustee name
Office (if any)
Dates acted (if not for whole year)
Romany Wood-Robinson
Joint Chair – Richmond Business Planning & Strategy Treasurer (interim) Marketing (interim) Joint Chair – Kingston Business Planning & Strategy Secretary Governance Evaluation, Impact and Measurement
April 2016
Caroline North Lisa Train Sophie Camilleri Penny Hoffmann-Becking Rachel Derrick Sam Rospigliosi Kevin Sears Caroline Bern
April 2016 April 2016 April 2016 April 2016
Social Media Safeguarding
April 2016 April 2016 April 2016 April 2016
Steering group member
Lead for…
Other roles
Romany Wood-Robinson Caroline North Sophie Camilleri
SEND Ofsted, CAMHS SEND Ofsted Dyslexia
Sylvie Harding Penny Hoffmann-Becking
Sam Rospigliosi
Physical disability EHCP/SEN Support Health Short Breaks/Social Care Downs Syndrome/MLD Social Media
Joint Chair, SFV Joint Chair, SFV Chair of Richmond Dyslexia Association & SENCo Founder: Phyz Founder: Phyz
Alison & Kevin Sears
Information & Research
Jo Dixon
Special Schools
Teresa Jones Nicola Staines Tracey Gaggiotti Annette Williams
Post 16 Hearing Impairment Autism and adhd Autism and adhd
Caroline Bern Prisca Cox tbc Kate Thomson
Post-16 Post 16 (MLD) Early Years Respite & Residential (new provision)
Steering Group leads
Rachel Derrick
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Rep. for 21andCo Local Offer development group member Local Offer development group member Richmond NAS committee members Chair of Governors, Clarendon special school CEO, Richmond Mencap Chair, TRAPHIC Founder: Express CIC Founder: Express CIC Governor: Rise School
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B: Structure, governance and management Type of governing document
Foundation Model Constitution
How the charity is constituted
Charitable incorporated organisation (CIO)
Trustee selection methods
Every trustee must be appointed [for a term of [three] years] by a resolution passed at a properly convened meeting of the charity trustees.
Additional governance issues and responses Policies
Operational Policy (How our Constitution works) Purpose and Values (Guiding Principles and Values)
Procedures
Complaints Procedures Induction and Training Procedures Data Protection Policy
Wider networks
Detail our spoke and hub model
Risks & Protections
DBS’s to be obtained (approx. 75% have current) Public liability insurance (detail policy = £5m) Level 1 Safeguarding a minimum (x4 have Level 2) IPSEA legal Training (x 4 have Level 2)
Guiding Principles
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We are independent of the statutory services and we believe constructive challenge is healthy.
Our approach is based on transparency, mutual respect and trust.
We work collaboratively and in equal partnership; we expect the same in return
We are parents of children or young people with SEND and collectively make certain decisions
Our roles are to contribute different perspectives and be as representative as possible of the families of children and young people with SEND in Richmond and Kingston
We reach wider than our direct contacts through bringing representatives of local disability-specific groups and specialist schools into our steering group
We have a flat, fluid structure
We seek to increase family’s participation and coproduction in the developing & commissioning of services that affect us
We work on a pan-disability basis, without exclusion or bias
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Values / Code of Conduct
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We are all volunteers and abide by the Nolan principles of public life. These are our values:
Selflessness – we take decisions in terms of our values and mission, for universal benefit (not personal benefit)
Integrity – we do not place ourselves under obligation to individuals or organisations that might influence us
Objectivity – we ensure that we are representative of SEND and our localities
Accountability – we accept accountability for our decisions and actions and submit ourselves to appropriate scrutiny
Openness – we are open about all decisions and actions that we take; and where required give reasons for our decisions
Honesty – we declare private interests relating to our duties and takes steps to resolve conflicts in a way that protects our reputation, values and missions
Leadership – we promote and support these principles by leadership and example
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C: Objectives and Activities Objectives The objects of SEND Family Voices are to relieve the needs of children and young people with Special Educational Needs and Disabilities and their families in the London Borough of Richmond and The Royal Borough of Kingston, in particular, but not exclusively by all or any of the following means: 1. Providing specialist advice and support to such children, young people and their families 2. Working in partnership with the local authority (Achieving for Children) and other public services to develop measurable changes and improvements of such children, young people and their families Richmond SEND Family Voice formed end June 2014. RSFV received charitable status 11th April 2015. In summer 2015, RSFV received DfE grant, via CaF for parent participation. Soon after, RSFV and LEAD Kingston joined forces into one forum - SEND Family Voices - October 2015. SEND Family Voices (SFV) bring people together into a community to improve services, share support and strengthen our common voice. By ensuring families are heard, we empower children, young people and their families to obtain the best possible care and services. We work independently from, but in partnership with the providers of children's services. Approach SEND Family Voices believes that by working collaboratively as a ‘critical friend’ with a constructive, solution focussed approach we will best serve the families we represent. Our intent is always to serve the best interests of families. Information, Consultation & Participation These three elements underpin the activities of SEND Family Voices: Information All families need to be provided with relevant, timely information. The better informed families are, the more confident and empowered they are. Consultation Consultation is a two-way communication and the wider membership of SEND Family Voices will always be provided with the opportunity to have their voice heard. We will invite all families to be involved in consultation processes as and when these come up to ensure that voices beyond the Steering Group are directly involved. We will reply to families’ responses and explain what has changed as a result of consultations (or where & why it has not been possible to make changes). Many families don’t have time to get involved in full participation, however all families have opinions. Participation Participation is a significant step on from consultation and requires a commitment. The steering group for SEND Family Voices take this role. Members of the steering group undertake to devote the necessary time and commitment to becoming actively involved in SEND Family Voices through attendance at meetings and training; keeping themselves informed and supporting planned activities, engagement and outreach.
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D: Funding & Costs The majority of our funding comes from a grant, provided by the Department for Education and administered by Contact a Family. The value of this grant is up to ÂŁ15,000 available for one parent carer forum in each Local Authority area of England. The stated aim of this grant is to strengthen parent carer forums, so that parent carers can participate in planning and decision-making about services in their area. As SEND Family Voices represents parents in two local authority areas, we apply for the funding for both Richmond and Kingston boroughs. We receive no funding from Achieving for Children, although they sometimes co-fund initiatives with us (such as production of the Golden Binder). Our funding is enhanced by individual donations. We are not currently in receipt of any other grant funding. Our Steering Group members are all volunteers.
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E: Achievements and Performance This is a summary of the needs in our parent / carer community that the Steering Group identified during the previous year and what actions the charity has undertaken. Needs Communicate the SEND reforms to the parent carer community in a way that can be easily understood. Need evidenced by the number of queries received just asking what the EHCP etc was all about.
Create a strong parent / carer community and voice so that the forum is as representative as possible. Reach as many parent carers as possible across as wide a range of SEN as possible
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What we did Created a SEND Family Voices guide to the SEND reforms for parents & carers – over 5000 distributed
Outcome Widely requested by SENCos, parents and professionals. Is the de-facto communication relating to the SEND reforms in Kingston and Richmond
Set up a series of 10 open meetings involving the Head of the SEN team from AfC to inform parents of what the changes mean and to give them an opportunity to ask questions directly of the SEN team. The Open Meetings also involved the lead commissioner for Post-16 commissioning to discuss post-16 provision in light of the SEND Reforms
Attended by circa 150 parents and carers. Very robust discussion and real dialogue. Very positive feedback from attendees. Visible reduction in levels of anger as the meetings progressed. Created a more positive relationship between parents and the SEN team as well as being a good way of sharing information
Ran a full day event with Steve Broach (leading SEN barrister) to communicate the legal framework around the SEND reforms
“Sold out” – attended by ca 100 parents and carers and professionals. Feedback was extremely positive,
Expanded the Steering group to cover Kingston and to better cover some disability groups (e.g. physical disability). Working relationships developed with all local disability groups to ensure appropriate information sharing.
Kingston and Richmond now equally represented. All local disability groups (except 1) represented directly on Steering Group. Good representation across our target group
Open meetings deliberately held across all locations in the boroughs to encourage as many of parents and “ hard to reach” parents to attend as possible. Held both during the day and evening meetings
Circa 150 parents / carers have attended our Open Meetings over the year. A few of those attending could be categorized as “hard to reach”. Feedback was positive and on the whole people found some answers to their questions
Held open meeting within a Twickenham school locality group (involves several schools) at the invitation of the school.
50 parents attended the two meetings. Most had had no previous contact with SFV as their children were within the “SEN Support” category and therefore cannot be reached
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Needs
What we did
Outcome through the Local Authority SEN database.
Website development, which joined up parent/carer communications across Kingston & Richmond
Receive large numbers of hits when particular topics are posted (e.g. easy read guide to short breaks.) Starting to be recognised by on-line community (eg several invitations to advertise as a ‘small business’) – suggesting that the website is receiving some attention.
Provide an independent parentled place to get questions answered, get advice and signposting; and sometimes just provide someone to talk to who “gets it”. A parent/carer forum can be seen as “safer” than professional advice and guidance services precisely because we are “just parents”
Provide an e-mail address where parents / carers can ask questions and receive support and advice
Circa 300 separate queries from parents / carers answered by email and telephone.
Provide a telephone number to call with questions or problems. Phone back service within 48 hours – however most answered same day.
Numerous issues expedited and sometimes solved as a result of SFV intervention
Provide independent information to parents on the SEND reforms. Other relevant legislation or implementations, both at local and national level.
Distributes (weekly / fortnightly) Dear All communications containing a wealth of information that may be of interest to the community
Recognised as de-facto source locally for SEN information by both parents and professionals; also by individual professionals and parents in other boroughs.
Regular contributor of content to the Local Offer. SFV has a Local Offer working group that continues to monitor and
Local Offer recognised by London meeting as an example of good (best) practice
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What is offered: Signposting to statutory and voluntary sector services. Helping parents find the right person to address their concern or query to (SFV is well connected within many organisations and can often find a short cut that helps) Putting parents in touch with other parents who may have had similar issues or have some expertise. Sometimes just being someone who listens and says ‘you’re doing everything you can’ which many parents find reassuring.
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Needs
What we did recommend changes as well as advocate for the Local Offer
Outcome
SFV jointly funded the Local Offer launch to ensure that it was event suitable for parents, carers and young people
Attended by over 100 parents and professionals and recognised as a relaxed, family event by all. A great success!
Provide information on local services from both statutory, commercial and voluntary sectors. This need increased during the year as the information and advice services (SENDIASS) was re-tendered and there was a hiatus period during which many parents were no longer receiving the Information Service email
Co-produced SENDIASS service specification to ensure parent/carer needs were included and measured.
We continue to challenge the quality of local services. SFV attends SENDIASS Contract Monitoring meetings as parent representatives.
Ensure that the parent voice is heard when major policy or strategy changes are being discussed by AfC or other key bodies
Developed an issues tracking log that records (anonymised) all issues and queries received by SFV and shares this consolidated information with decision makers at AfC, the Council and other important forums in order to demonstrate what the parent community is concerned about, and their current experiences with services.
Over 400 separate issues logged so far. Taken seriously by decision makers in terms of understanding where changes are needed. Has been used to galvanise change around guidelines for the SEND reforms and Short Breaks provision (or lack of).
Co-produced (with Richmond HealthWatch) a local survey of the CAMHS service
SFV and CAMHS reported to the Local Safeguarding Children’s Board, Quality Assurance Group (LSCB QAG), who used the data to influence policy and commissioning decisions
Organised a steering group and consultation process for the SEN Transport policy review. Facilitated the meetings
Around 70+ families directly involved. In attending meetings or providing written feedback. Robust discussions but agreement reached and cost efficiences made. Joint Kingston and Richmond policy for SEN transport has been agreed. Parents have thanked the Commissioner for listening to
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Needs
What we did
Outcome them. So far no complaints received about new policy.
Organised “chocolate cake’ Consultations (to encourage young people to attend) relating to revised accessibility strategy.
Around 40 parents, carers and young people were involved in the process. A new accessibility strategy has been created. A brochure has been produced from the work called “I just want to be like everyone else” which has been recognised by the DfE as an example of national good practice and is a first of its kind. Brochure has been distributed by SENCOs to all teachers at schools.
In the process of organising and running consultation meetings on new Free Special Schools proposed within the boroughs
These have been well attended at short notice (due to posting problems) with over 100 parents taking part. A robust debate ensued, chaired by SFV (commendation received). The results are being collated and will be reviewed by the Auriga trust. We will continue to monitor the process.
Provide a “single version of the truth” around the EHCP / Transfer review and other SEND reform processes so that parents do not receive conflicting (and sometimes wrong) information.
Worked with SEN team and other professionals from health and education to create a definitive guidance document (the Golden Binder) with detailed chapters on: Early Years, SEN support in School, EHCPs, Transfer Reviews, Annual Reviews and many other aspects of support.
Extremely positive feedback from the professional community as well as parents
Also empower parents to understand what they need to do to get the best possible outcome from the process.
In order to write the guidance; set up and facilitated multi-agency workshops with all involved professionals to agree the correct processes and guidance
Presented at a “Westminster Briefing” as an example of national good practice relating to co-creation.
Evidenced by very large numbers of complaints / issues and queries relating to the EHCP / transfer review and other SEN processes
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Too early to tell whether it will have the intended impact on number of queries received by SFV relating to the SEND reforms
Published on the Local Offer and distributed to all SENCOs and professionals involved in the SEN reforms Instigated the setting up of an ongoing multi-agency process governance group to own future amendments to the guidelines to
First process governance group meeting scheduled for September. Everyone invited so far is attending
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Needs
What we did ensure that everything stays aligned
Outcome
Build links and influence with local statutory service providers (AfC and CCGs) in order to ensure that the parent voice is heard when decisions are being taken
Attendance at SEND Implementation meetings chaired by AfC Ofsted readiness Meetings chaired by AfC regular meetings with Head of SEN / SEN management team to discuss issues and try to resolve problems Regular attendance at ISCD strategy meetings regular meetings with Health commissioners for both Richmond and Kingston regular meetings with Richmond Council to discuss Children and Young People with Disabilities and Learning Difficulties (CYPwDLD)
Present concerns that come up in the parent community. Attempt to position these in such a way that action is taken. Recent topics that have been raised are: 1) EHCP / Transfer review process – still many complaints – not meeting statutory duties 2) Short Breaks – lack of consultation relating to changes / not clear whether provision has been mapped to need / general dissatisfaction with social work 3) Concerns relating to change of location of social work team to Moor Lane 4) Concerns relating to lack of Education Psychology resource
Set up and facilitated workshop to discuss role of parent participation with representatives of AfC / Health and other professional organisations
Set of principles for working together developed
Build links with SENCos and schools to better support the wider SEN community and ensure that messages relating to inclusion, SEND reforms and coproduction are also being hear within the school community
Attended all SENCO forums as observers and more recently as presenters of short segments of the agenda
Gradually starting to see SENCos referring parents to SFV to help with issues and provide support
Maintain knowledge of background to SEND reforms. legislation / government policy etc etc
Attended many Parent Carer Forum and DfE events to stay on top of changes in legislation and better understand the reforms
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Delivered copies of the Golden Binder to all schools in Richmond and Kingston.
Extremely positive feedback from the SENCo group on the Golden Binder. A significant number have volunteered to be part of the Process Governance Group going forward. A Steering Group that is well informed about across the spectrum of the reforms Information gathered at these events is disseminated in userfriendly form to the community via the “Dear All”
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Needs
Get more help for parents and carers that are struggling with their responsibilities – in particular against the backdrop of changes in thresholds relating to social work
What we did Many steering group members have done IPSEA level 1 training and some are undertaking level 2
Outcome Certainty of professional knowledge for the community we serve.
All steering group members expected to have done level 1 Safeguarding training, and some have completed level 2
Certainty of professional understanding for the community we serve.
Identified the statutory duty to have a “Parent Carer Needs Assessment”
A first: nationally. Richmond and Kingston have the first Parent / Carer Needs Assessment.
Co-developed the assessment with Strategic Lead for Family Support
Too early yet to know whether it is making a difference to the support that parent / carers receive but early indications are encouraging
Communicated the new assessment to the community (Dear All and Open Meetings) Ensure that families’ voices are heard, and listened to, at a strategic decisionmaking level to directly influence commissioning and improve local services.
Whilst we are a relatively new organisation, our professionalism, integrity and evidence based approach has attracted positive attention. We are now routinely invited to take a seat, or contribute on decision making boards and forums.
SEND Family Voices have participated & contributed to the following boards and forums over the past year:
As a group, SFV are made up of individual parents, plus representatives from all (bar one) major disability specific support groups across both boroughs. As such, our reach is significant and our voice pan-disability.
SFV have strengthened and created a network of VCS groups across the two boroughs of Kingston & Richmond. This enables better partnership working, and is recognised as a collective, professional and powerful voice. Our sustained influence – through participation - is improving services for families locally.
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SENCo Forums (termly) Joint Chair; Process Governance Group (EHCPs) SEND Ofsted Readiness Board ISCD Management Board Accessibility Strategy Steering Group SENDIASS commissioning and contract monitoring panel Short Breaks commissioning board (for 2018 commissions) Local Offer Development Group Health & Social Care CoProduction Group [Richmond] Autism Programme Board (Richmond) Strategic Managers Network (NW Cluster parent rep) Community Paediatricians commissioning panel (Kingston)
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Needs
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What we did
Outcome Children’s & Young People Emotional Health & WellBeing Board (Richmond)
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F: Financial Review Income
CAF Participation Grant
Total Income
£29,098
£29,098
Expenses Web Development
£ 719
Staffing Costs
£5,215
Develop Info and Resources
£5,532
Events Open Meetings
£1,934
Events large one off
£4,023
Hard to reach
£1,307
Parent Carer Expenses
£777
Infrastructure
£4,172
Additional Projects
£1,608
Training
£3,563
Total Expenditure Income vs Loss
£28,850 £248
G: Declaration The trustees declare that they have approved the trustee’s annual report above. Signed on behalf of SEND Family Voices
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