Notes from the Autism MK Partnership Board
Tuesday 20 October 2015 at Milton Keynes Council, Civic Offices
People who were there:
 Anne Matthews, Carers MK
 Anthony Tull, Board Co-chair / Autism Trainer
 Bernard Atkins, Autism Trainer
 Beryl Claydon, Grandparent
 Billy Shipp, Community Support Worker (Autism), Milton Keynes Council
 Bryony Parsler
 Catherine Lee-Delisle, Parent
 Chris Ford, Autism Social Worker, Milton Keynes Council
 Emma Austin, Parent
 Florinda Talbot, Rhodsac Care
 Irena Butterworth, Parent
 Jane Lynds, Board Co-chair / Disability Consultant
 Janet Dawe, MK Healthwatch, Spouse and Parent
 Julia Frank, Care Support MK
 Kevin Mangan, POhWER
 Lisa Munro, Specialist Teacher Communication and Interaction, Milton Keynes Council
 Lucienne Dunlop, Acting Joint Commissioner
 Michaela Gallimore, Talkback
 Nigel Brown, Talkback
 Nikki Parsler, MK Private Landlords Association
 Nir Leuchter, Autism Trainer
 Norman Cummings, Community Development Worker, Milton Keynes Council
 Rachael Sherratt-Smith, PACA / Carers MK
 Rebecca Parsler
 Robin Goold, Joint Commissioner
 Simon Rice, Autism Trainer
 Sue Sapwell, Employee Support Assistant, Milton Keynes Council
 Teresa Harvey, NAS Rep and Parent
 Tracy Jennett, Parent
 Tracy Bayley, NAS Rep and Parent
 Trevor Thompson, Head of Service Mental Health
 Zoë Jones, Social Care Transformation Project Manager, Milton Keynes Council
Autism Partnership Board
October 2015
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People who told us they could not come:
 Ann Spencer, Disability Employment Advisor, Job Centre Plus
 Carolyn Pierson, Healthwatch Milton Keynes
 Hayley Lucas, MIND BLMK
 John Head, Parent
 Jon Wood, Partnership Manager, DWP
 Kerry Thomson, Parent
 Lorraine Hicks, Parent
 Louise Taylor, MacIntyre
 Michaela Cole, Choice Support
 Nina Soloff, Speech and Language Therapy
 Paulette Tull, Parent
 Teresa Kingwell, PeoplePlus+
Action
1.
Introductions
Jane Lynds and Anthony Tull co-chaired the meeting. Meetings will be
held at Civic Offices so people can use public transport.
2.
The Care Act and services for people with Autism
Zoe Jones (Social Care Transformation Project Manager) gave a
presentation on the Care Act. The presentation will be circulated with
these minutes.
Trevor Thompson (Head of Service – Mental Health) is leading work on
operational services for people with Autism. Trevor is looking
strategically at the Autism Service. The Autism Pathway Review
describes services now. Three Heads of Service are reviewing the
recommendations; looking at the Autism Strategy, pathway review and
the best way to provide a robust service. More people on the spectrum
are coming forward and services need to specialise. Trevor felt the
Partnership Board is a good place to discuss and will attend future
Board meetings.
LD
TT
People with Autistic Spectrum Conditions, parents and carers, and “The
Others” did group work to:
1. list questions about the Care Act for Zoe to answer
2. list 3 priorities for Trevor to feedback
Feedback - Parents/Carers
The parents group had a list of questions on the Care Act.
Q. Who does the Carer’s Assessment?
A. This can be done through Carers MK or Milton Keynes Council. If the
person is under 18, transition work should provide an assessment of the
individual and their carer. The Care Act covers adults. Support for a
Autism Partnership Board
October 2015
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Action
parent of someone under 18 would be provided by Children’s Services.
This is linked to the Children and Families Act. Zoe to clarify.
ZJ
Q. Does transition work only come in when the person wants to move out
and become more independent?
A. No, it should be as early as possible.
Q. It would be helpful to have examples/case studies.
A. Some examples are given in the guidance. Zoe will find these.
ZJ
Q. What is the definition of “substantial difficulties”?
A. There is a definition in the Care Act. Zoe will find the links.
ZJ
Q. How do people get an advocate?
A. Advocates are provided by POhWER. Zoe will see if there are any
fact sheets on advocacy.
https://www.pohwerreferrals.net tel: 0300 456 2370
ZJ
Q. What is the process for decisions?
A. People receive a letter with the outcome of the assessment. It will
show what needs are and are not being met. Decision panels are only
held when a package of care is being decided.
The group’s final comment was on the diagnostic pathway and how to
address the backlog.
Please see attached sheet with further information from Zoe.
Feedback – ASC
The group had asked Zoe questions directly. Their 3 priorities were:
1. Diagnosis – the process needs sorting out. It is unclear how to
self-refer and the waiting list is too long. If people have
difficulty communicating there needs to be an option for email
for those who will not use the phone etc.
2. A funding stream for Autism services
3. Supported Employment – Equality Works have been told they
cannot work with people with Autism (this would be cheaper than
making a new service though)
Feedback – The Others
Q. Transition – clarification is needed on where we are now and what
needs to change.
A. Trevor said more information has been gathered and the Transitions
Protocol updated to cover more than Learning Disabilities. Earlier
identification helps. More people with ASC are coming through.
Autism Partnership Board
October 2015
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Action
Priorities:
1. Family support
2. Diagnosis
3. Post-diagnosis support – Autism Social Workers face barriers in
getting specialist support from other teams e.g. OTs, psychology
etc.
3.
Aspects Youth Club
Norman Cummings, Community Development Worker, explained the
background to Aspects Youth Club. He was approached by a parent
looking for somewhere for her autistic son to go. Norman felt the team
needed to do something to meet wider needs and started a youth club
for people 11-19 years old and on the spectrum. The club has been
running for 19 months. People come from across the whole of MK (about
20-30 people). There is also a parent support group (with tea coffee
and biscuits), where people can network, share ideas and create
friendships. It has been very positive.
Norman is in the process of setting Aspects up as standalone
organisation. They are also looking to provide a group for 6-10 year olds
and a transition group 19+ to look at employment etc. The club meets at
Broughton Pavilion and would like a second base in west MK.
Activities include ten pin bowling (helps overcome anxiety in crowds of
people), trips to great Yarmouth twice per year, a Christmas Meal to
encounter the social side. Members get along very well, with very few
incidents, there are lots of activities. Friendships are formed and
maintained.
Julia asked about the membership capacity. Norman said they have a
large facility and do not like to turn people away. If more space is
needed they can expand the hall.
Nigel asked about staff and funding. Norman said staff are paid and
they are looking at funding sources to bring in more staff. Aspects
want to grow and become a recognised service. Funding bids are being
written. Aspects also have a tuck shop which generates income.
There isn’t a referral system. People contact Norman or turn up and fill
in the registration form on special needs and behaviours (need
knowledge to deal with issues). They have a very calm team.
Sessions are on Tuesdays from 4.15pm to 5.45 at the Broughton Pavilion.
For more information, please contact Norman Cummings on
Autism Partnership Board
October 2015
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Action
01908 254042 or 07946470918.
4.
Adult Carers Training – Anne Matthews
Carers MK are running courses on autism awareness for carers
supporting people over 18. People will be able to share their experiences
too. Next sessions are on 8th and 22nd March (start 5-5.15pm) at
Margaret Powell House, 439 Midsummer Boulevard, Central Milton
Keynes, MK9 3BN. 10 people per session due to size of room. Training
provided by Milton Keynes Council and the Autism Trainers has been
adapted slightly. Sessions will be advertised in the January Carers MK
Magazine. Booking is through Carers MK on 01908 231703. Anne hopes
this will become part of the post diagnosis process.
5.
Talent Unlimited Update
Jane said work continues on crowd-funding to gain a charity number.
There is £1000 left from the Autism Conference and they need to raise
another £4,000.
We watched a YouTube video produced by Simon Rice and Cullen Palman
(https://youtu.be/2qO-eT3q0WY) .
If people want to be part of it they need to contact Simon or Jane.
There is a form to fill in and they will contact the person once they are
setup. Nothing can happen until TU have a charity number and then
they will look for accommodation and a manager.
TU will be a place to access information, a social place and a place to do
things together. They are looking for low cost/free accommodation. In
the short term they will hire accommodation and meet 1-2 times per
week. Simon said it will be user-led and the people using the service will
decide what they want.
There will be individual contracts with people about the percentage of
money people get from sales etc. They will also apply for funding and
contracts in future. Jane asked for anyone with web design experience
to contact Simon as they need help with the webpage.
6.
Minutes and Matters Arising
www.mkautismdirectory.com
The Autism Team in ASCAT have been signposting people to the
directory. Luci will ask Chris Stelling at Autism Bedfordshire how many
hits the site has had, any progress on an events diary, any other
feedback that has come to them.
Anthony will talk to Robin Goold (new commissioner starting 2nd
November) about having Autism Experts by Experience.
Autism Partnership Board
October 2015
AT
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Facebook: Autism MK
LD
Twitter: @AutismMK
Action
Disability Action MK (DAMK)
On 16th July Jane attended training about how to put a campaign
together to make it effective.
7.
Any Other Business
Bernard said Disability Awareness Day 2016 will take place on a
Saturday. Organisation meetings started in September.
This is Luci’s last Partnership Board as she moves on to another job.
Michaela thanked her on behalf of everyone for her hard work. The
Board would like to know if there will still be someone to support them.
Rebecca Parsler spoke to us about her range of sensory jewellery. Any
questions please contact rebeccaparsler@gmail.com (Facebook
https://www.facebook.com/chainmailjewellerymk
8.
Date of next meeting
Tuesday 26th January 2016, 9.45am - 1.00pm at Milton Keynes Council,
Council Chamber, Civic Offices, 1 Saxon Gate East, Central Milton
Keynes, MK9 3EJ
Autism Partnership Board
October 2015
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Facebook: Autism MK
Twitter: @AutismMK