Participation, Co-production & Moving On 7th October 2015 Dear All As the SEND Family Voices team expands and we develop our understanding of how local services operate, individual parents are taking leadership for specific projects…. As we typed this, it’s remarkable to note just how much we are involved in on behalf of families; and this isn’t all of it!
Let’s start with Chocolate Cake What does Accessibility mean to you and your family? In particular, accessibility within schools… so, is that about ramps for a wheelchair, classrooms on the ground floor, brightly coloured warnings on steps & stairs, a quiet route to a classroom? Please come to one of our ‘Chocolate Cake Consultations’ on this subject - rsvp to this e-mail or telephone 07469 746 145. Thursday 8th October
10am to 12noon
Room F, Guildhall 2, Kingston
Tuesday 13th October
6pm to 8pm
Room 7, York House, Twickenham
Thursday 5th November
10.30am to 12.30pm
Bedelsford School, Kingston
Tuesday 24th November (especially for young people, no parents expected)
6pm to 8pm
Langdon Down Centre, Teddington
Preparing for Adulthood (post-16 etc) Prisca Cox and Caroline Bern are leading a working group on Preparing for Adulthood and all this entails… from post-16 provision through to employment (or other) opportunities. Prisca is chairing a meeting next week with Eamonn Gilbert (whose responsibilities include 1419 Commissioning and SEN Transport) and is keen to widen the discussion as far as possible. If you have any specific questions on this subject, or would like to get more involved in this group, please reply to this e-mail.
Short Breaks # 1 Rachel Derrick is leading a working group on developing Short Breaks and is keen to expand this group to include a family (in either Kingston or Richmond) of a child with ADHD and/or high functioning autism. Whether that fits your family or not, if you would like to get involved in this working group, please reply to this e-mail and we will put you in contact with Rachel. Our understanding is that Rachel and the group will be working in close partnership with Achieving for Children (AfC) on leading the wider consultation with families, all the way through to this group providing advice on the commissioning of short breaks. This is coproduction and participation as it should be!
Short Breaks #2 Bringing two teams together, from two boroughs, to provide short breaks and social care has had teething problems. Last summer, we took concerns to a public forum with the Councillors in Richmond (there is no a equivalent in Kingston). The initial concerns and a pdf
of the subsequent minutes and feedback on the short breaks programme are available on request. The next meeting is on 14th October and if you wish to have any points clarified, please reply to this e-mail.
Short Breaks #3 AfC have a statutory duty to consult on their Short Breaks Statements and there are currently two versions, see this link to the Local Offer: http://www.afclocaloffer.org.uk/site_search?utf8=%E2%9C%93&search_site%5Bterm%5D=shor t+breaks+statement AfC’s two Short Breaks Inclusion officers, David Arrow and Jodi Williams, are very keen to make this as easy to understand as possible and are seeking parents to contribute to a multiprofessional meeting. Details are: Wednesday 4th November - 10am to 12.30pm Moor Lane Centre, Moor Lane, Chessington, KT9 2AA If you would like to participate, please contact David or Jodi direct: For Richmond: Jodi.williams@achievingforchidlren.org.uk For Kingston: David.arrow@achievingforchildren.org.uk If you are happy to do so, please let Jodi or David know your child/young person’s gender, additional needs and which short breaks they currently attend.
Education, Health & Care Plans (EHC Plans) Penny Hoffmann-Becking is leading our work on EHC Plans and is currently focussing on how Health integrates into the plans. (Social Care is to follow!) If you would like to contribute to this work, please reply to this e-mail and we’ll put you in touch with Penny.
The Care Act Alison & Kevin Sears, whose joint knowledge and experience knows no limits, are our leads on the Care Act and how this impacts families and young people. Any questions at all on this… please reply to this e-mail.
SEN Transport Romany is leading this consultation and there is a working group meeting early November, with Eamonn Gilbert, to steer the wider consultations programme during November. Please reply if you would like to join this group.
The Local Offer Sam is our lead parent on this, and this working group has a very productive, well developed relationship with Karen Lowry, AfC’s Local Offer Content manager.
Family voices on the SEN Panel Some of you may remember that we have begun a project with Anna Chiva (AfC’s Head of SEN) on developing the parent’s representation within the SEN Panel. This work is ongoing – we have to take great care on the governance - and is led jointly by Harry James and Penny. We hope to have more news on this in the future; realistically in the New Year!
CAMHS (Children & Adolescent Mental Health Services) In partnership with Healthwatch Richmond and the Richmond ADHD and NAS parent groups, we conducted a parents survey into how people experienced CAMHS. At the same time,
SFV conducted a schools survey (also with Healthwatch Richmond). We have since fed back some of the key findings to the Local Children’s Safeguarding Board Quality Assurance Group (that’s LCSBQAG for short!). The highlights – which we presented – are below. Romany currently leads this work with Keisha from Healthwatch Richmond.
Wiki’s Showcase – last reminder… Jonathan Rix, Professor of Participation and Learning Support, The Open University, will give a brief introduction, followed by an address from his father Lord Brian Rix. Professor Andy Minnion MBE, Director of RIX Research and Media, will show how we can use Wikis to transform the lives of those with learning disabilities. All attendees will get the opportunity to get 'hands on' with a Wiki so don't forget to bring your tablet or smartphone. It promises to be a useful, informative and rewarding experience. Attached is the agenda for the event and registration details follow: Monday 12 October - 5:00pm to 6:30pm. Langdon Down Centre, Normansfield, 2A Langdon Park, Teddington, Middlesex, TW11 9PS To register go to: https://www.eventbrite.co.uk/e/afc-wiki-showcase-event-tickets-18625648817 Or contact: wikis@achievingforchildren.org.uk
Moving on… We talk to a lot of parents, either at meetings or perhaps they call or are referred to us. Our children take different paths and there are points in their lives when it can be hard to predict their future. This is a helpful article that may resonate with those of us with ‘challenging’ children. With thanks to Express CIC for sharing this. http://www.telegraph.co.uk/education/universityeducation/11916871/The-joy-of-waving-myautistic-daughter-off-to-university.html As ever, if you have any queries at all, please ask and we'll do our best to find an answer. With best wishes, Romany (for Richmond) and Caroline North (for Kingston) Phone: 07469 746 145 www.sendfamilyvoices.org
Highlights for LCSB – 24th September 2015 Introduction Survey requested due to high levels of concern following CAMHS Transformation in Spring 2014. Parents’ survey; SEND Family Voices, Richmond ADHD & Richmond NAS & Healthwatch Richmond. Schools’ survey; SEND Family Voices & Healthwatch Richmond Previous work by SFV indicated high levels of concern from schools due to pastoral duties for pupils. Response rate bears this out: Parents 10% of total (50 of 500) Schools 25% (13 of 54). LCSB has a Safeguarding brief: a good emotional state keeps children/young people safe A bad emotional state carries safeguarding risks. Additional funding from Central Gov’t for five year Transformation is an opportunity.
Highlighted feedback Reception areas not welcoming, often inhibiting Medication focussed Lack of support from Initial concern….[= gap] to Initial Referral …[= gap] to assessment/diagnosis …[= gap] to what next/yearly appointments Communications between CAMHS and schools poor (schools left without knowledge of treatment) Access to information (you don’t know what you don’t know) What does good look like? Welcoming family friendly reception and entrance (including SPA!) No stigma around mental health. Acceptance that is happens to a lot people (1:4) Good communications – from initial referral through to diagnosis and treatments (or not) to finish Good early support & understanding from all = prevention, rather than treatment Investment in people / 1:1 support (eg just saying to families “you’re doing the right thing”) Technology doesn’t cut it. Holistic, systemic referrals process that includes all (schools, CAMHS, families) as equal partners, places young person at the centre & respecting dignity and anonymity of young person Easy access to prescriptions and a clear path on how to collect them Recommendations (& we’d like to come back in 6 months) 1. Affect Richmond Royal entrance & reception (already being actioned by Trust) 2. Make SPA web interface family friendly. Limit the need for ‘Health Warning’ being given to families before self-referral. This has been ‘being done’ since October 2014 and it limits access for vulnerable families who may self-refer 3. Include feedback to referrer (eg schools) after initial referral & CAMHS appointment 4. Pathways for Schools & SPA to have immediate help & support to offer families after making a referral into the SPA, to include: Access to information (Local Offer?) Signposting and support from voluntary organisations