Evidence, short breaks, respite & a guardian angel

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Evidence, Short Breaks, Respite & a Guardian Angel 11th March 2017

Dear All We open with national news, and then move onto meetings about local respite and dates for support groups…

Call for Evidence The deadline for contributing to the Lenehan Review is fast approaching (17th March 2017). SEND Family Voices will be able to submit a local response using our own evidence base.

If you would like your views to contribute to this, please reply to this e-mail by Tuesday 15th March. Here follow some snippets from the very readable review: “These are our children and they are known. They occur in every area and they often follow a well-trodden pathway out of their local authority area, never to come back” (page 3) “These children are a part of our community, not external to it.” (page 4) “23. One service said “Success needs strong commissioning relationships. Key to these is a strong parental engagement and models based on being respectful to families” (page 14) “27. In many areas, each agency believed that the other should be more engaged, more proactive, more responsible. This was even the case when I [C Lenehan] spoke to all partners in a locality” (page 15) “32. The system has a number of built in barriers which restrict access to supportive interventions.” (page 16) “48. When children are diagnosed with cancer we rightly assign the child and family a keyworker who stays with them through their journey. If we support that group of children, we should be able to do the same for this group.” (page 19) 80. One parent said: “I’ve struggled to get £18,000 of care for my son in the community. I can’t get any more so he is moving to a placement costing £200,000. What happened to the middle? 81. There is something fundamentally wrong with a financial system that appears to reward crisis but disincentives early intervention.” (page 29)

You can read a copy of the full review here: https://www.afclocaloffer.org.uk/blog_articles/943-these-are-our-children-a-review-bydame-christine-lenehan-director-council-for-disabled-children


SEND Decision Making and the Law “In January/February 2017, workshops were held across the 9 regions to assist Local Authorities in interpreting and applying the legal requirements of the Children and Families Act 2014 to some of the key decision points The workshops were led by the Department of Education SEND Adviser team and IPSEA*, facilitated by Mott MacDonald. All resources that were either used or referred to across these workshops are now available to download on the Mott MacDonald website” http://www.sendpathfinder.co.uk/send-decision-making-and-the-law-workshops. * IPSEA = Independent Parental Special Educational Advice www.ipsea.org.uk

Respite…. Provision, Changes & Possibilities SEND Family Voices, with MeToo&Co are hosting a meeting on Respite Care:

Friday 24th March, 10am to 12 noon The CrossWay Centre, Richmond Road, Twickenham, TW1 2PD

What does ‘overnight respite’ mean to you – and for you? Does your child have complex health needs, severe or complex learning difficulties, a life limiting diagnosis or other complex additional needs? Does your child receive ‘overnight respite’ (that’s an overnight break for you and them!). If not, would you like them to? There has been a certain amount of interest locally regarding overnight respite; whether that be the proposed closure of Croft Cottage or the proposed new provision in Moor Lane. We all have our own experiences and we’d like to hear yours. So, together SEND Family Voices with MeToo&Co will be exploring five questions: 1. 2. 3. 4. 5.

What does overnight respite mean to, and for, you? What works? What doesn’t work? What respite is available locally and what are the criteria to access it? Is there anything else you would like us to know or to ask?

And more… We will be inviting staff from the various local providers and organisations involved in respite care. More information will follow, so please put the date in your diaries and watch this space! A few places will be available in the crèche. Bookings for the meeting and the crèche will open soon, so please wait until the next email to book your place. Here’s a bit more information about Croft Cottage: http://www.richmondandtwickenhamtimes.co.uk/news/15148853.Families_of_disabled_childr en_to_travel_13_miles_away_to_Chessington_as_respite_care_home_to_close/ Here’s a bit more information about the proposed new provision in Moor Lane http://www.sendfamilyvoices.org/overnight-short-breaks-proposals/


Kites, Ribbons and Flyers Clubs – and more on Short Breaks & Respite Kites, Ribbons and Flyers are free clubs run by EnhanceAble in both Kingston and Richmond. Kites is an after-school group for young people (aged 11-18) with Asperger’s Syndrome or high functioning Autism. https://www.afclocaloffer.org.uk/organisations/19073-enhanceable-kite-club?term=kites Ribbons is an after-school group for younger children (aged 6-11) with Asperger’s Syndrome or high functioning Autism. https://www.afclocaloffer.org.uk/organisations/14453-enhanceable-ribbons-group Flyers is an after-school group for children (aged 5-11) with complex health and / or physical disabilities https://www.afclocaloffer.org.uk/site_search?utf8=✓&search_site%5Bterm%5D=flyers Last week, current users of these groups in Richmond received a letter saying the Richmond clubs would be closing due to insufficient numbers attending. A number of parents have contacted SEND Family Voices regarding Kite club. SFV have inquired and asked that the closure of Kite club be delayed, and that AfC carry out some targeted marketing to those families for whom the service would be appropriate– we have yet to hear back. In the meantime, Richmond families CAN use the service in Kingston. We have heard from some families who say they’ve been told they can’t (this is incorrect, they can) or that there are no spaces. If this applies to you, please contact: Caroline Jager, Short Breaks Manager: caroline.jager@achievingforchildren.org.uk and/or Heather Anderson, Head of Integrated Services for Children with Disabilities (interim): heather.anderson@achievingforchildren.org.uk

More on Short Breaks & Respite Here are the Short Breaks pages on the Local Offer. This page offers links to providers and the inclusion officers. https://www.afclocaloffer.org.uk/pages/home/leisure-activities-and-short-breaks/shortbreaks Please note the deadline for applications for Aiming High funding for Easter was 10 th March (yesterday) – however, it may still be worth putting in an application over this weekend as realistically the managers may not look to these until Monday morning. This page takes you straight to details for the GEM Club (for children with moderate learning difficulties): https://www.afclocaloffer.org.uk/pages/home/leisure-activities-and-short-breaks/shortbreaks/after-school-clubs-and-specialist-holiday-clubs This page will give you alternative sources of funding for short breaks: https://www.afclocaloffer.org.uk/pages/home/leisure-activities-and-short-breaks/otherfunding-and-grant-sources If you would like to talk to SEND Family Voices about short breaks, please reply to this e-mail, or contact Rachel Derrick, our Short Breaks lead on: rachelsfv@outlook.com

What’s new on the Local Offer?


Family Support Do you have a child with additional needs? Pop in and meet Ruils family support worker, Sian Austin, talk to other families, share experiences, get advice, have a cup of coffee and a cake. https://www.afclocaloffer.org.uk/events/20259-family-matters-drop-in?term=family+matters

Online counselling for young people (Kingston) The Kooth website/service is up and running in Kingston. You can find out more here: https://www.afclocaloffer.org.uk/organisations/24684-xenzone-kooth?term=kooth

Kingston Wildcats Pool Club for people with Learning Disabilities Come along play some pool. Meet new friends. https://www.afclocaloffer.org.uk/events/23507-kingston-wildcats-pool-club-for-people-withlearning-disabilities?date=2017-03-15

Kingston Mencap …is a local registered charity which supports adults and children with a learning disability, and their families and carers. The charity always offers a warm welcome to new people. https://www.afclocaloffer.org.uk/organisations/7847-kingstonmencap?term=Kingston+mencap

Kingston Carers Network “Support Group for parents and carers of children with additional needs -Monday 13th March Come along and meet other parents/carers in a similar position. We can also offer advice on a wide range of issues including benefits, allowances and carers’ rights, help to access benefits, including appeals, counselling services and signposting and advocacy to access services and support.” Contact Clare Keogh for more information on this and future meetings and/or look at their website for more: T: 020 3375 8227 E: carers3@kingstoncarers.org.uk W: www.kingstoncarers.org.uk

Parent Carer Needs Assessments – a focus group “Richmond Carers Centre are holding a Focus Group for Parent Carers in the Richmond borough to gather their feedback on the new assessment for parent carers known as the Parent Carers Needs Assessment (PCNA). The purpose of the Group will be to find out how effective and supportive this assessment process was for parent carers and, also, to hear from those who did not know about the PCNA or chose not to complete it. We are planning to use the feedback from the focus group to inform further discussions with other professionals in the borough and the local authority.” If you are interested in attending this group, or would like more information, please contact Tanya by 31st March 2017 T: 020 8867 2380 E: support@richmondcarers.org W: www.richmondcarers.org

Caddie – The Guardian Angel Thank you to the parent that sent this in… heartwarming (and just over one minute long)


"Caddie is my special friend, my super dog. This world we live in I find hard, I find everything hard, but Caddie keeps me calm and keeps me safe." http://www.bbc.co.uk/news/uk-england-cornwall-39157773 As ever, if you have any queries at all, please ask and we'll always do our best to find an answer. With best wishes, Caroline North (for Kingston) and Romany (for Richmond) Phone: 07469 746 145 www.sendfamilyvoices.org


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