Here comes summer - Amaze
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NEWSLETTER MAY 2019
For families with children and young people with SEN and disabilities
so you have a the card in time for the
holidays. Both cards give access to
loads of great leisure offers.
swap ideas with other
parents on a parent
forum or Facebook
group
In Brighton be sure to pick up a
copy of the council’s great “Summer
Fun” booklet from a library if you
don’t get one via school. A good
Getting through the summer doesn’t have to feel like a marathon… See p15 for more on the
amazing folk who’ve been raising money running for Amaze. Pictured: Fleur Tindal doing a fab job website for accessible days out
running for Amaze in the Brighton Marathon 10k. around the UK is
dayoutwiththekids.co.uk and you can
Here comes summer get a free copy of the Rough Guide to
Accessible Britain here:
bit.ly/2IQdqcB
Summer is just around the corner and the school
holidays will be upon us before we know it. How can Summer schemes
we keep our children busy and ourselves smiling? These can offer fun for children and
a break for you, but if you’re looking
for specialist and inclusive schemes
Looking after Filling the day don’t waste any time as they get
ourselves Write a list of fine day activities and booked up early. The Local Offer in
rainy day alternatives that work for each area (eastsussex.gov.uk/
This is first on the list because we so
your child so you don’t have to think localoffer or brighton-hove.gov.uk/
often put ourselves last, but thinking
on your feet every day. Remember, localoffer) is the best place to start
through what helps us cope and be
you’re not the only one in this boat; your search. The Brighton Family
resilient is essential for summer
swap ideas with other parents on a Information Service
survival. We’ve shared some ideas
parent forum or Facebook group. (www.familyinfobrighton.org.uk or
throughout this newsletter to help,
If you don’t already have a Compass call 01273 293545) and ESCIS in East
including: planning ahead for
Card (www.compasscard.org.uk) or Sussex (escis.org.uk/category/family
changes, how to get a Carer’s Card
I-Go card (bit.ly/2H4I5E7) check to -information/) are also mines of
and thinking about befriending.
see if you are eligible and apply now, information.
Connecting with other parents is a
top tip; if you’re not already part of a
group now could be a good time to In this issue:
join, especially as some run social and Befriending launches in East Sussex p2 · Carers Centres &
family events in the summer. See this Carers Cards p4-5 · Transition tips p6 · Brighton PaCC pull-out
info on our website: bit.ly/2vyeHkf or
(feat. marchformASCot, Mental health consultation, Short
call the SENDIASS helpline (01273
772289) to get contact details for
breaks reductions) p7-10 · Changes at 16 p11 · Disability
groups near you. Pride p10, 12, 14 · Courses and workshops p16
2 • out of amaze MAY 2019 news
Peer power
Amaze’s befriending service for parent carers,
Face2Face, is expanding across Sussex.
The befriending service, which has “My journey began several years
been running in Brighton & Hove for ago when I found myself in the
six years, is working in partnership darkest of times and having a
with support charity Reaching befriender made me feel stronger,”
Families in West Sussex and is now says Louise. “I got a lot of help from We know that Face2Face helps
able to offer befriending with a team Amaze along the way and I felt I then parents feel more emotionally strong,
of seven West Sussex befrienders. could give something back as a resilient and good in themselves. We
In East Sussex, training starts next befriender myself. The training was also know that training as a
month in Eastbourne and we hope to excellent and helped me discover so befriender can have a really
be able to offer befriending from much more about myself and my life. transformational effect on our ability
September. The training is intensive After years of volunteering and to cope and see the future more
and runs over seven to eight weeks setting up the breakfast club I am now positively. “It’s made me really look
covering the core elements of the project worker and I have never at what I’ve been through and how I
befriending and peer support, active felt as much passion and commitment have come out smiling,” says Kelly,
listening, safeguarding, boundaries in a role before.” one of our recently trained
and the parent journey. Feeling stronger is a key outcome of befrienders. “It’s definitely made me
peer support. As part of the Face2Face focus on the positive.”
training, we run a session on
resilience and looking after ourselves, “Before your visit I had
one of the core concepts behind peer
befriending.
no hope,” said one
The magical ability to ‘bounce back’ parent we recently
when facing intense challenges visited. “Now I feel full
around parenting a disabled child can
seem elusive. Peer befriending helps
of hope so thank you.”
by offering key emotional support to Parents report that Face2Face peer
Local parent carer and new Face2Face project families, particularly around the time
worker, Louise Howe support gives them a sense of hope
of diagnosis or new challenges (such for the future, often at their most
Meanwhile, in Brighton & Hove, we as an additional diagnosis or challenging and lowest time. “Before
are delighted to announce that local difficulties at school). your visit I had no hope,” said one
parent carer Louise Howe has joined parent we recently visited. “Now I feel
us as our project worker. Louise full of hope so thank you.”
originally had a befriender when she East Sussex
faced her own challenges with her son We are very pleased to announce
and then went on to become a we are piloting Face2Face East Brighton & Hove
befriender herself. Sussex, in Eastbourne initially. We Befriending continues in Brighton
are looking for befrienders to join & Hove and we are also running our
our training course which starts successful groups (monthly
West Sussex next month. The training will be in breakfast club, autism group for
West Sussex Face2Face is now able Eastbourne but is open to parents under 8s, a group in partnership
to offer befriending to parent across East Sussex as long as they with PRESENS for under 5s and a
carers who live in West Sussex and are able to travel. monthly dads group).
have a child up to the age of 25. Please contact Amanda Mortensen Please contact Louise Howe for
Please contact Rachel Fielding at at amandam@amazesussex.org.uk more information at
rachel@reachingfamilies.org.uk for more information. louise@amazesussex.org.uk
news out of amaze MAY 2019 • 3
New SEND strategy for East Sussex Children’s
East Sussex has now launched its
new Special Educational Needs and
sections on how pupils and families
can be involved.
Disability Team
Disabilities Strategy 2019-2021 which The strategy will be subject to a change
can be found here: continuous review cycle, informed by
Brighton and Hove’s social care
czone.eastsussex.gov.uk/inclusion- focus groups for each of the four
teams for children’s disability and
and-send/send-strategy/ priority areas:
adult learning disability are coming
The strategy sets out the number of Building capacity for inclusion
together to be a life-long service.
children with SEND, the types of in schools and services
The new service will have 0-13, 14-
education provision and other High quality provision,
25 and 25 plus teams as a key aim is
services they are currently receiving, outcomes, and aspirations
to make transition to adulthood
and some projections for future Transition throughout the
work better. Parents and young
demand. journey of the child
people will notice the changes from
It highlights what the challenges Communication and
the autumn.
are and what will be prioritised over engagement with families,
the next three years, including children and young people ESPaCC Focus
What Amaze does and where Groups
The parent carer forum in East
Check out our quick guide:
Sussex (ESPaCC) ran three focus
Service Brighton & East Sussex West Sussex groups in March. The themes were:
Hove children’s mental health; children’s
SENDIASS disability services (social care); and
information, advice and support (Provided by West supported employment pathways. A
service for parents, children and Sussex SENDIAS) summary of each discussion and
young people next steps can be found here:
bit.ly/2GRwDwo
Compass disability register and (Provided by
Compass Card i-GO)
DLA and PIP but less (Provided by
intensive West Sussex
help with claims support County Council)
Face to Face Eastbourne with
Reaching
parent befriending area
Families
Amazing Futures (See West Sussex
Eastbourne
young people’s peer support Local Offer for Visual menu at Jigsaws Café, Eastbourne
area
activities alternatives)
Looking Forward
A cafe with a
difference to try
(See West Sussex
young people’s career support Local Offer for
programme alternatives)
this summer
Note: as well as our direct services, we makers and service providers.
Jigsaws Café in Eastbourne was
also work behind the scenes to try to This is a good reason to make sure
designed to provide a safe and
influence how other services, policies you’ve signed up to your local
welcoming place for children and
and practices are developed locally disability register: The Compass in
adults with autism & learning
and nationally. We use the Brighton & Hove and West Sussex or
difficulties. With a sensory room,
experiences we hear from parents and the iGO in East Sussex.
and two separate seating areas,
young people in our advice and We also work with the three Sussex
Jigsaws is the perfect place to
support work, as well as the data we parent carer forums – PaCC , ESPaCC
venture out. Find them at:
collect via the Compass, surveys and and WSPCF and we host PaCC in
74 Seaside, Eastbourne BN22 7QP
other feedback to influence decision- Brighton and Hove.
4 • out of amaze MAY 2019 feature
activities, days out, courses and
treats are an opportunity to have fun,
relax, or socialise with other carers.
Check what’s on via the Facebook
page @careforthecarers and website
cftc.org.uk or by calling 01323
738390.
If the young person you care for is
18 or over, Care for the Carers’ other
services are also for you, including:
Gateway – telephone (01323
738390) and drop-in (Highlight
House, 8 St Leonards Road,
Caring for you as carers Eastbourne, BN21 3UH) service
delivered by carer support
Have you heard of your local Carers Centre? You can workers, providing advice,
find one in both East Sussex and Brighton & Hove, information and support to carers.
offering a range of support, mostly to parent carers of Open Monday to Friday, 9am to
over 18s. 5pm. Use the Gateway to find out
more or book all other services.
If you care for someone aged 18 or thecarerscentre.org. Carers Information and Advice
over you could be using your local Via the Carers Hub, they provide Groups
Carers Centre’s services now as well as general information, advice, support Carers Wellbeing Groups
Amaze, and it’s reassuring to know and signposting for carers, plus help Mental Health Carers Support
they’ll be there when you “outgrow” with Carers Assessments. Call 01273 Groups.
Amaze as your child reaches 25. Both 977000 or email Young Adult Carers (YACs) Groups
centres offer a range of information, info@carershub.co.uk . – for carers aged 17-25yrs
support and activities, including a Carers’ Activities are peer-support Carers’ Clinics – one-to-one
couple even if your child is not yet 18. groups and workshops, social coffee appointments with a Carer Support
mornings, and information sessions Worker
Brighton & Hove on topics such as manual handling, Supported Self-Assessment – face-
The Carers Centre has been first aid and coping with stress. to-face or telephone support to
providing family carers in The Carers Reablement Service complete the Carers Self-
Brighton & Hove with matches volunteers to carers who Assessment
support and advice since 1988 and is want to achieve personal goals for Time to Talk Counselling –12
now a key partner in the Carers Hub change, for example to go to a gym, sessions of free counselling to
(carershub.co.uk) for the city. use a computer, attend a book group support you to cope with the
All parent carers, or learn to cook. emotional impact of your caring
whatever the age of role.
their child can sign up to receive East Sussex Healthcare Appointment Respite
Carers News, their quarterly Care for the Carers Grant – Funding to meet the costs
newsletter with local and national has been of respite so that you can attend
information for carers: supporting unpaid your own healthcare appointments
carershub.co.uk/members/. carers across East Sussex since 1989. or courses that help in your caring
Their Young Carers service is All parent carers whatever the age of role.
available to siblings of disabled their son or daughter can sign up for
children under 18 as well as young their CareLine Magazine for local and
carers of adult family members. national information for carers and
If the young person you care for is their monthly e-newsletter for regular
18 or over, the full range of Carers updates: bit.ly/2DDFqQO
Centre services are on offer. To find Carers’ Activities are also open to
out more look at their website: carers of under 18s. These social
feature out of amaze MAY 2019 • 5
iContact
celebrates autistic
women and girls
on World Autism
Day at the Depot
Cinema in Lewes
This Autism Acceptance Day (also
known as Autism Awareness Day),
iContact – a Lewes-based autism
support group – hosted an event at
the Depot cinema in Lewes. As
autism is under-diagnosed in
women and girls, they chose to
make autistic women and girls their
theme for the event.
Representatives from iContact
Don’t forget your Carers’ Card spoke in a Q&A before the showing
of the film Snow Cake, and were
thrilled to be joined by the film’s
Did you know that both East Sussex and Brighton &
screenwriter, Brighton local and
Hove have Carer’s Cards? Getting one is a resilient Amaze patron Angela Pell. The film
move to look after yourself as a parent carer without is a drama focused on the friendship
breaking the bank. between an autistic woman and a
man who is traumatised after a fatal
car accident.
The East Sussex Carers Card offers Brighton and special rates on
Over the past two years iContact
savings and discounts at shops, cafes complementary therapies,
has been working with the Depot on
and leisure venues around East meditation, yoga and more.
a number of projects, including
Sussex, including some lovely Young carers aged 8 to 25 can also
weekly autism-friendly screenings,
complementary therapies and treats, apply for a Young Carers' Card with all
as some people on the autism
and all day parking at the Conquest the benefits of the Carers' Card, plus
spectrum find ordinary cinema visits
Hospital and Eastbourne District special deals including free gym) and
difficult or stressful.
General Hospital for just £1.70. The free swimming at Freedom Leisure
The screenings offer a more
card is run by Care for the Carers. You centres in the city. The card is run by
relaxed experience, with an easy-
can sign up on online and view a Brighton & Hove City Council and the
going attitude to comings and
directory of where discounts are Compass Team at Amaze negotiates
goings, so people can move around
available at www.cftc.org.uk/get-a- the offers. There’s a guide to Carers'
or take a breaks if they need to.
carers-card or by calling 01323 Card offers here: bit.ly/2XNvtIe and
They also make sure the sound is not
738390. more information about the card on
too loud, the house lights are not so
Parent carers of Compass Card the Compass website here:
dark, and there are no trailers or
holders in Brighton and Hove, are compasscard.org.uk/compass-card-
adverts.
automatically eligible for a Carers' offers/carers-card-gullys-days-out/
The Depot’s autism-friendly
Card. It brings dozens of discounts
screenings run every Sunday - see
that focus on your health and
Look out for special Brighton & website for details: lewesdepot.org/
wellbeing including membership
Hove Carers’ Card offers to access/autism-friendly For info on
discounts at Freedom Leisure centres,
celebrate Carers Week 10 to 16 other autism-friendly
student rates on Brighton & Hove
June! We’ll be telling you all about screenings: bit.ly/2EWfvXa
Buses Key Card, concessionary rates
them in our e-newsletter, Compass For more information about
at The Duke's cinemas, 20% discount
News Brighton & Hove. iContact visit: icontactautism.org
at Venetian restaurant Polpo in
6 • out of amaze MAY 2019 feature
All change
A summer challenge for many of us is helping our child
be ready for upcoming transitions in September:
starting school, moving up to secondary or to college.
New starts can be positive and exciting, but change is
often hard for children with additional needs, so as
parents how can we help?
First, let’s check in with our own out where to go if you need to step in.
feelings. If we are worried about the Your child’s new setting should
next step for our child, they may pick have extra transition arrangements
up on it, so it matters to take care of for children with SEND and may well Your child may be more comfortable if
ourselves and do things that support invite you in. If not, try to meet you wash it and sort out scratchy
our own resilience. someone from their SEN team before labels. Practice the journey to school
Make sure you have someone you the end of this term. Write down what so it’s familiar.
can talk to about any concerns they should know about your child Give your child opportunities to talk
outside your child’s earshot. Parent (strengths, interests, medical or ask questions but don’t force it. For
Facebook groups are a good option to information, what works for them) some children it will help to look at
connect with people who share your and check the arrangements for your pictures; maybe look at the school
experience - local ones include child’s support. Make sure you and website together. Use visual
Amaze, ImPACT and mASCot. Bear in your child know the systems for things timetables or social stories. You could
mind if you ask “Does anyone have like lunches and using the loo. write or draw together some things
experience of this school?” you’ll get they are looking forward to at the new
some parents saying it’s great and Make sure you and school. This can be fun, but may also
others saying the opposite; every
child is different.
your child know the help you spot and deal with things
they are worried about or just don’t
systems for things like understand yet.
lunches and using the Before the end of the holidays get
loo. into a routine for bedtimes and
getting up so they won’t be overtired
Use the summer holidays to ease during their first week. Would
your child into the change. It’s helpful choosing a “transitional object” suit
if your primary-aged child can your child? That’s something they can
recognise their own name or a picture carry around at school that is a link
of themselves at school, so stick up with home, that they keep in a pocket
name and picture labels at home. If and touch or look at or smell when
It will help your peace of mind to be there’s a uniform, buy it early. Get they need to.
clear about practical info. For your child to try it on and see what And finally, plan an activity with
example, get the contact needs practising like buttons or a tie, them for the first weekend after they
arrangements with the new school or or adapting for their particular needs. start that is nice but also familiar.
college clear. At each stage there
tends to be less direct contact than
For more ideas:
before; at nursery you may talk daily,
at primary school you may need to “Starting Secondary” factsheet:
book a time to speak to the class amazesussex.org.uk/resources/fact-sheets/
teacher or SENCO. Email is a good way contact.org.uk/news-and-blogs/is-your-child-starting-a-new-school-
to communicate with secondary our-parent-adviser-offers-her-top-tips/
school staff, whilst colleges start by www.autism.org.uk/about/transition/starting-or-switching.aspx
assuming they will talk to the young The SENDIASS helpline offers information and advice: 01273 772289,
person not you, so you’ll need to find sendiass@amazesussex.org.uk
MAY 2019
Short breaks budget
reductions halved
following PaCC input
As in previous yearly budget
discussions, PaCC continues to
challenge short breaks savings
proposals in Brighton and Hove's
2019-20 budget.
PaCC has reported year on year
that the Compass statistics clearly
show that a significant number of
families in the city are in need of
more support; parent carers need
essential respite and children and
young people need opportunities
to access the community with the
correct level of support.
The council’s short breaks saving
target in the 2019/20 budget was
£140k. PaCC talked at length with
councillors highlighting
significant concerns. In February's
full council meeting, a decision was
Connor, 11, waving his flag for autism acceptance made to reverse half of the £140k
saving to £70k.
First ever mASCot autism In making this decision
councillors listened to officers and
march is a great success! made the judgement that the
extended day (a plan to offer a mix
March 2019 saw the first ever children who attended had loads of of afterschool,weekend and
March4mASCot. This month long fun. March4mASCot ended with a holiday social care opportunities)
celebration was created to fundraise relaxed march, starting at Hove at the SEND hubs in the city will be
for the projects which PaCC partner Lagoon and finishing at Black Rock. more cost effective and increase
mASCot runs for their members, raise This was enjoyed by all the people social care opportunities for more
awareness of mASCot and autism, and who took part, including Connor, 11, families.
promote autism acceptance. Most who is autistic and has a diagnosis of PaCC remains concerned about
importantly, it was to show how proud ADHD (see picture). unmet need and will continue to
we are of our children and young mASCot is a parent-led peer to peer raise this priority issue.
people – particularly those who are support network for families who have PaCC will continue talks with
neurodiverse. a child or young person with an officers, maintaining a dialogue
During March, mASCot members autism spectrum condition or around the need to achieve an
arranged events to help achieve the neurodevelopmental differences. For inclusive broad range of short
aims of March4mASCot. One of these further details please visit breaks activities and provision for
events was a children’s party and the www.asc-mascot.com. families that need it.
These four pages are brought to you by Brighton & Hove PaCC who are hosted and supported by Amaze
8 • out of amaze MAY 2019
T21 families get their party on NICE news for
for World Down Syndrome Day deaf children
PaCC Partner T21 tells us about celebrating their loved Updated guidance from
ones on World Down Syndrome Day, March 21st. NICE for NHS provision
of cochlear implants
Every year, World Down Syndrome Day T21 Brighton & Hove was set up in leads to more flexible
is marked on the third month on the 2014 to offer friendship and support
21st day (March 21st). This day was to children and young people aged
approach.
chosen to represent the condition, 0-25 and their families. As time has Welcome news from 'NICE', the body
because a person with Down gone on, our membership has that sets guidelines for NHS
Syndrome (also called Trisomy increased and we are now so pleased provision. On March 7th, they
21) has three copies of chromosome that we have members with Down updated their guidance for the
21 rather than the usual two. Syndrome/Trisomy 21 who are in their provision of cochlear implants for
For the fifth year running, families 30s and 40s. deaf children and adults with a
and friends from across Brighton & We run a Bumps, Babies & Preschool sensory neural hearing loss.
Hove and surrounding villages monthly meet up, park play dates, The hearing cut-off level at which
gathered together to mark World twice monthly table tennis sessions, cochlear implants could be offered
Down Syndrome Day. We celebrated summer picnic, World Down Syndrome has been brought down significantly,
our loved ones with a disco featuring Day annual party and other social and the guidance recommends a
DJ Ross, a singalong music session meet ups. more flexible approach to analysing
with Dave from Little Pickles music, Anyone who has Trisomy 21/Down hearing patterns. This means that
ping pong with Brighton Table Tennis Syndrome or their parent carer who many more children and adults will
Club coaches and more. would like to join our group and fall within the criteria and be able to
As well as a table groaning with closed Facebook page (T21 Brighton & request an implant if they wish.
food, we had a spectacular cake from Hove) will be very warmly The change will take some months
Eclipse Foods, and an epic raffle, with welcomed. Please to be fully implemented into clinical
prizes donated by friends and local email T21Brighton@gmail.com. practice, but as implant centres
businesses. Thank you so much to all Belated happy World Down steadily increase their capacity over
our lovely donors. It was wonderful to Syndrome Day to any other folk who the next five years, the numbers of
bring everyone together, allowing old are also powered by that extra 21st patients per year receiving cochlear
friends to catch up, and new chromosome! implants is expected to double.
friendships to begin. We hope we can meet you soon.
T21 families celebrating their loved ones on World Down Syndrome Day, March 21st.
out of amaze MAY 2019 • 9
Mental health and wellbeing
services – prevention is the
way forward
Responses to our recent consultation on mental health
and wellbeing services in Brighton & Hove highlight that
parent carers continue to feel their children’s complex
mental health needs are not being met.
We know from the media that there is getting in touch with anyone at parent you have to bridge’.
a national crisis in meeting the CAMHS is very difficult.” Our recommendations underline
mental health and wellbeing needs of Waiting lists and scarce provision of the importance of prioritising support
children and young people across the services are seen as key challenges to for children and young people with
country. So it was timely that our accessing support. Parents reported SEND, as the issues they experience
latest Brighton & Hove consultation dissatisfaction with communication, are often so complex.
asked parent carers for their particularly in how families are kept These findings align with the
experiences of accessing these informed about referrals and waiting development priorities identified in
services over the last three years. This times. Parent carers feel that the the 2018 ‘Transformation Plan’
report builds on previous PaCC system fails children and young update. We hope the insights and
consultations and provides a good people by not providing support suggestions parents have generously
opportunity to reflect on progress quickly enough when needs have been shared will be useful to
made. agreed. Families commented that the commissioners in planning next
Amaze and PaCC representatives system continues to focus not on steps. The report will be submitted as
have been working with colleagues on prevention but on crisis. evidence to the Sussex-wide
the Brighton & Hove Children and Parent carers would like to see more independent review of children and
Young People Mental Health joined-up services: young people’s mental health
Partnership Group around ‘I think the system is fragmented. services. We also hope that the
implementation of the ‘Mental Health Whilst they [individuals working in Clinical Commissioning Group (CCG)
Transformation Plan 2015 – 2020’. health, education, social care] all will prioritise investment in the neuro
There have been various service greatly individually contribute, I think -developmental pathway, which has
improvement initiatives introduced in the funding structure goes for a been identified as a key area for
recent years, including a fragmented approach, which as a development.
recommissioned Community
Wellbeing Service, the Schools The CCG have responded:
Wellbeing Service and a redesign of Thank you to all parent carers who contributed, the CCG welcomes your
the Specialist CAMHS service. feedback. We recognise that the next phase of improvements must take into
However, despite these changes our account the specific mental health and emotional needs of children and young
report highlights a desperate need for people with SEND, including:
more services, in part because of the The re-commission of the Children and Young People’s Community Wellbeing
rising levels of poor mental health in Service (new contract to begin by June 2020); this offers an opportunity to
children and young people with SEND. address known gaps like access to services for children and young people
Very few parents who responded to with SEND.
our consultation reported an A bid to be part of the second wave of “trailblazer” areas offering expert
improved experience of mental health mental health support in schools; this will include a specific focus on special
and wellbeing services: schools and the needs of vulnerable groups, such as students with SEND
“Time taken between referral and Continuing to improve the neuro-developmental pathway
receiving treatment [and] access to
therapy was lengthy.“
You can read the full report and its recommendations here:
“Getting through the barrier and
paccbrighton.org.uk/reports
10 • out of amaze MAY 2019
Coffee morning groups become community groups
During the past few months both sessions and decided to get involved The Hangleton & Knoll Parent Carer
the Hangleton & Knoll parent carer and grow it into something more - talk Group takes place every third Tuesday
group and the Sunflower support about parent carers’ empowerment! of the month at St Richards Church
group in Moulsecoomb have become A big thank you to Claire Johnson, and Community Centre.
community groups, with their own Community Development Coordinator There is also a monthly coffee
constitution, committee and bank at The Hangleton & Knoll Project that morning in Whitehawk which takes
account. The groups can now apply supported and facilitated the group in place every last Thursday of the
for funding to support extra West Hove and to Helen Jones, a month at the Whitehawk Inn.
activities, planned and organised by Community Development Worker who If you want to find out more about
parent carers involved with the helped the parent carers attending the coffee mornings please email
groups, whilst Amaze and PaCC the Sunflower Group in East Brighton Paolo at paolo@paccbrighton.org.uk
continue to support the monthly to navigate the complexity of or call 07484
sessions. becoming a community group. 051753.
This fantastic achievement was The Sunflower Group takes place
possible because parent carers every second Tuesday of the month at
connected with each other at the Moulsecoomb Primary School.
PaCC plans for the year ahead
Every year the PaCC Steering Group We know our influencing work
meets to review what we’ve achieved around SEND services can sometimes
over the past financial year, and what feel slow, and there is a long way to
we want to focus on going forward. go. This is why for the coming year
This year, towards the end of March, we’ll continue our involvement with
Sunflower Support Group in Moulsecoomb we gathered in the Friends Meeting the Brighton and Hove SEND
House and talked about our strategy to ensure parent carers
accomplishments over the previous voices are heard when making plans
year (2018-19). We looked at how for the city.
suggestions from our November Other priorities for PaCC include:
PaCConnect are shaping the Brighton working to improve post-16
& Hove SEND strategy. provision so that young people can
We discussed PaCC involvement with have a better future and access
Blowing bubbles at the Pacc Picnic last year the merging of special schools into training and employment, plus a
hubs, as well as successful focus focus on kids who ‘fall between the
Disablity Pride groups on Pathological Demand gaps’, particularly around mental
returns! Avoidance (PDA), and Education
Health and Care Plans post-16. We
health and education.
Thank you for supporting us
also celebrated helping to prevent during the past 12 months, we
After two scorching summer successes
respite budget cuts by reducing the believe that together we have a
we’re looking forward to more fun
proposed savings from £140,000 to stronger voice. See below if you
events at Disability Pride 2019.
£70,000. would like to join PaCC.
The event will run at Hove Lawns on
the 14th July from 11.30am to 7pm.
Last year PaCC held our picnic and Make your views count
we’ll be there again, so come along Join the PaCC by emailing admin@paccbrighton.org.uk or tell us what is
and find us. concerning you at paccbrighton.org.uk/get-involved/your-views
Keep an eye on our Facebook page You can also join our closed Facebook group at
for more details nearer the time: facebook.com/groups/parentcarerscouncil
bit.ly/2UHjeLn
You can also follow Disability Pride PaCC’s pull-out supplement is funded by the Department
on Facebook: bit.ly/2ISiccS of Education through Contact a Family (now Contact).feature out of amaze MAY 2019 • 11
No surprises—be ready for
changes at 16
One way to stay resilient as parents caring for children
and young people with SEND is to make sure things
don’t take us by surprise. Here’s the heads up on some
key changes around decision-making and benefits that
come when our children reach 16.
Start young Benefits Personal Independence Payments
(PIP) replaces DLA at 16 but it’s
When our children are little it’s hard At 16, young people have the right harder to claim. Most young people
to imagine them being expected to to manage their own money. Most are expected to start their own claim
make decisions for themselves when don’t feel ready to take on this over the phone and will be required to
they turn 16 but that’s what the responsibility, but to continue to attend a face-to-face assessment.
Mental Capacity Act says must manage your child’s benefits means Don’t expect to make a successful
happen, unless it’s clear that they taking on the role of ‘appointee’. An claim without recent supporting
don’t have the capacity to do so. appointee acts on a young person’s evidence. Timescales are short so it’s
And if they don’t, as parents we behalf in all benefits matters, not just worth getting prepared ahead of
won’t automatically be able to carry PIP. time. If your teen doesn’t have an EHC
on making decisions for them, so it plan or recent reports from a health
makes sense to teach them how to to continue to manage
professional, you will need to think
make choices and express an opinion. your child’s benefits how to get up-to-date evidence,
This is especially important for
children who don’t find
means taking on the maybe even use some of their DLA to
pay for an assessment.
communication easy; we want their role of ‘appointee’. Getting DLA for your child is no
voice to be heard when we can’t speak guarantee of PIP at 16, so be
If you haven’t had a letter from the
for them. forewarned, this benefit is hard won.
DWP to ask whether you will be your
It’s hard for young people to make That said, if it feels right to claim then
child’s appointee, call a few months
big decisions if they haven’t had do it, don’t be put off. Call the Amaze
before your child turns 16. The DWP
plenty of practice as a child making helpline for advice.
must visit to arrange this and unless
smaller ones. Summer can be a good But if your child no longer needs
your child has an EHC plan, they will
time to practice as we’re usually in the extra support that held them
need to meet you both.
less of a hurry. together in earlier years: if they have
If a young person tells the DWP
representative they want to take flourished into a healthy, resilient,
Education Health responsibility for managing their own capable young person, enjoy the
and Care plans money, the DWP will pay their benefits moment! Have fun helping your child
plan for the future you hardly dared
direct to them. So it’s worth having a
SEND law says that your child hope for in the past and be glad you
conversation about this ahead of
becomes a “young person” at the end don’t need to claim PIP for them.
time!
of the academic year after they turn
16, and can make decisions in their
own right, including taking control of Find out more:
their EHC plan if they are able to, so Mental Capacity Act:
the local authority should start scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance
addressing things direct to them.
Amaze factsheets on “Involving Young People”, What is PIP”, “Tips for
But your youngster can choose to
Claiming PIP” and “PIP Face to Face Assessments”:
say they want you to do this on their
amazesussex.org.uk/resources/fact-sheets/
behalf, and if they don’t have capacity
to do it themselves the local authority Gov.uk—Become an appointee for someone claiming benefits:
should continue to ask you. www.gov.uk/become-appointee-for-someone-claiming-benefits12 • out of amaze MAY 2019 young people
Celebrating young people at Disability Pride
Young people who come to the Amazing Futures Brighton peer support activity
sessions are looking forward to celebrating Disability Pride on Sunday 14th July.
We’ve been talking together about the things they’re each proud of – which is what
Disability Pride is all about.
We love hearing about the many Blackpool for a national advocacy
achievements of the young people conference, and more.
with additional needs at Amazing Danielle says doing the internship
Futures Brighton. at Amaze has given her the confidence
A number of the young people who to do so many things she’s never done
have trained as volunteer peer before. She’s a fantastic role model
Shamann
supporters have gone on to get paid for young people coming to the
work at Legal & General, Screw Fix, Amazing Futures Activity Sessions, a Music Production course. As part of
the Dharma School, and early years and we’re so pleased she still his internship, Amaze and
nurseries. Some young people are at volunteers despite all her other AudioActive have been supporting
university, others are still at college. commitments. Danielle is a shining Shamann with his professional
We’ve checked in with our current example of a young person with development. He has been mentored
and past interns: disabilities working hard to achieve by a worker from AudioActive to help
Danielle, Amaze’s first intern, runs the things she wants in life. run music production workshops for
training sessions with a number of young people at mASCot, and recently
organisations she volunteers with. ran a music and lyric writing
She’s helped adapt and run workshop for Amazing Futures.
workshops with YMCA’s Right Here
mental health & wellbeing project for Danielle is a shining
pupils at Downsview Hollingdean
School and for young people at Danny example of a young
Amazing Futures Brighton, helping to Danny, the second Amazing Futures person with disabilities
build their resilience. intern, has had a few jobs since working hard to
leaving Amaze and is hoping to work
as a Leader for Camp Canada this achieve the things she
summer. wants in life.
Amazing Futures is supporting
some of our peer supporter volunteers
Danielle
to become workshop leaders, learning
She helps Carousel run training how to plan and run sessions for
sessions with cinema staff on how to young people. Jesse plans and leads
Eliph
make their cinemas more accessible the drama group, and young people
to people with learning disabilities. Eliph, our third intern, is working will be running art & crafts and sports
She also helps Speak Out provide very hard doing her Art & Design sessions over the summer.
training for the Thumbs Up Scheme, Foundation Course at the Met, as well
raising awareness of how businesses as working for Amaze helping develop We’ll be celebrating all young
can provide a better service to people the Looking Forward project. Eliph people’s achievements – whatever
with learning disabilities. also runs art workshops for Brighton they might be – at Disability Pride on
She volunteers at Mymarc’s art Museum & Art Gallery. 14th July. Please come and meet
workshops for young people with Shamann, our fourth intern, is also some of these very remarkable and
SEND, helps select films for the Oska a student at the Met, at their resilient young people and see their
Bright film festival, has gone to Northbrook campus, where he is doing Celebratory Self Portraits.
Many thanks to the National Lottery Community Fund for funding our Amazing Futures project in Brighton & Hove.young people out of amaze MAY 2019 • 13
Looking Forward support available in
Brighton & Hove and Eastbourne
Support now available for young people with SEND as they look to their future
As part of their preparation for one to one action planning to The project supports young people
adulthood young people need to encourage aspirations and look to develop their resilience so they
think about their next steps in at ways to move towards their feel more confident in moving
education, employment and goals toward their goals and the
training. 49% of people with training sessions on skills challenges that go with this.
disabilities are not in employment, needed to find a job, college, or Looking Forward is available in
so it’s vital that young people with training placement e.g. CV Brighton and Eastbourne. Any
SEND get the support they need to writing and interview young person aged 14-18 with SEND
figure out the best path for them. techniques is eligible. Young people aged 19+
The choices ahead can seem Workshops to look at choices can also attend if they have an EHC
overwhelming, so we’ve set up the and next steps (which parent plan. It’s a rolling programme so
Looking Forward project to work carers can also attend) young people can access activities to
with young people and help them to Young people can choose to attend suit their needs.
identify their next steps. the sessions that interest them and we
Looking Forward offers a variety of will support them to identify what For further information, please
options for young people to choose they want to do, and how they’ll get contact Liam on 07483 111659 or
from: there. liam@amazesussex.org.uk
Young people tell us what they want
Young people with special educational needs and disabilities (SEND) across Brighton
& Hove and East Sussex have been helping Amaze to shape the information, advice
and support service we offer to young people directly.
In February, students at East Sussex activities. We designed these to be
College in Hastings and the Met fun, inclusive, and accessible. We got
College in Brighton took part in some great feedback—one young
consultations with Sally, our Young person taking part told us, “I’m really
People’s Worker, about how they find enjoying this, it’s really fun.”
out information, and how they would Claire from our Amazing Futures
like support from Amaze. East Sussex project, and Bryony (our Sally, Bryony and Claire (left to right)
Amaze also participated in the East Sussex Young People’s Intern)
way. Listening two ways”. They often
Speak Up Speak Out event in helped out and provided an area
want us to involve their parents too.
Eastbourne on 21st March. This youth where young people could just relax
The top three ways in which young
voice event was co-produced by the and create art.
people seek information about their
East Sussex disabled young people’s
What has Amaze found out? additional needs, or about support
voice group The Able Group and East
Young people want support from an available to them is to ask their
Sussex County Council.
Amaze advisor by meeting them in parents and carers, staff at schools or
58 pupils with SEND aged 12-18
person, and to be able to text them colleges, and turn to YouTube. We are
from a range of 13 mainstream and
beforehand. One student explained: now planning to create some YouTube
special schools attended to give their
“So you can tell them how you’re information clips which will be
views on a number of topics and take
feeling, get advice and support and available for young people.
part in Amaze’s eight consultation
they can give advice about the best Watch this space!
Many thanks to our Amazing Futures East Sussex funders, East Sussex County Council, Global’s Make Some Noise, and the Insurance Industry
Charitable Foundation, and to our Looking Forward funder, the Careers and Enterprise Fund.14 • out of amaze MAY 2019 compass
Let’s hear from our Compass Compass Card
Card team in Brighton & Hove... discounts are the
tip of the
Want to be in a Live in East Sussex? Apply for an i-Go iceberg…
card for great leisure discounts:
film? bit.ly/2H4I5E7
If you thought the Compass Card in
The Compass Team at Amaze is asking Brighton & Hove was all about
young people to video themselves leisure discounts, think again. True,
using their Compass Cards, visiting there are discounts at around 300
Compass Card venues and having fun venues across Sussex and beyond,
so they can star in a cool film that will but underpinning the card is a
be launched later this year. The team sophisticated database, ‘Compass
is asking young people and their B&H’, the disability register for the
friends and families to send short city.
video clips to Katie at the Compass So when a young person or parent
Team by Monday 10 June 2019. in Worthing carer applies for a Compass Card by
There’s a prize draw for everyone A bouncing session for two filling in a Compass Registration
who sends a clip, so you could win: people at Air Arena trampoline Form, the information is transferred
Two pairs of tickets to the park in Chichester to the disability register by the team
Connaught Cinema in Worthing A go karting session for two at Amaze. No one’s personal details
Five family tickets for a City people at Selsey Go Karts are shared outside Amaze, but the
Sightseeing open top bus tour collated data is a powerful tool that
Full details here: bit.ly/2LfJQ6x or
in Brighton & Hove can directly benefit disabled
email katie@amazesussex.org.uk
A go karting session for two children and young people by
For information about the Compass helping local services plan better.
people at Brooklands Go-Karts
Card, visit compasscard.org.uk The i-Go scheme run by East
Sussex County Council works the
Celebrate Disability Pride with the same way, supporting an East Sussex
disability register.
Compass team! Not only is the Compass Card
expanding leisure opportunities,
We’re pushing the boat out for Brighton Disability Pride Compass data is working hard below
this year with a range of special Disability Pride the surface to bring real change and
Compass Card offers and ‘Disability Proud’ prize draw. improvement. Win-win!
Disability Pride Compass Card offers educational needs to two ‘Blue makes you burst with pride as a
There are a range of unmissable, Oasis’ screenings at The Capitol in Compass Card holder or as the parent
time-limited Compass Card offers from Horsham during July of a Compass Card holder and we’ll be
our lovely Compass Card Partners to Compass Card holders already get running a prize draw for everyone who
help you get into the party spirit for a free carer ticket at Sussex Prairie contributes.
Disability Pride. The team was still Garden near Henfield, but they’ll Again, we’re indebted to our
confirming deals as we went to press, also be able to take a friend for Compass Card Partners for their
but here’s a quick snapshot of those free too over the weekend of 13 donations. Prizes confirmed so far
that are confirmed already: and 14 July include a year’s membership to
Wheelchair climbing session for Disability Proud prize draw Freedom Leisure centres in Brighton
£10 and a £5 climbing taster & Hove, two family season tickets to
You’ll find information about our
session for Compass Card holders Sussex Prairie Gardens and two family
glorious Disability Proud prize draw
with High Sports at Withdean day tickets to Bocketts Farm.
on Compass Card and Amaze social
Sports Centre in Brighton media and through our weekly e- Check out our e-newsletter
Free cinema tickets for Compass newsletter, ‘Compass News B&H’. Compass News B&H for full info on
Card holders with autism or special We’ll be asking you to tell us what offers and prizes closer to the time.fundraising out of amaze MAY 2019 • 15
Beach Life Festival
Bungee Jump
Calling all thrill seekers: bungee is
back at this year’s Beach Life Festival
in Eastbourne on Saturday 13th July.
Do you dare take on the 175ft
challenge to raise money for Amaze?
Brighton Marathon bike riders: #teamAmaze If bungee’s on your bucket list, like it
was for 16 year old Jack Collington,
Marathon efforts for Amaze now’s your chance.
Jack’s little sister Katy, 3, was
Brighton Marathon day on Sunday the 14th of April saw diagnosed last year with autism and
a great deal of action for Amaze. global development delay. Their mum
Rebecca Reilly applied for DLA but
Six dads from Amaze’s Face2Face was rejected, so she called the Amaze
project, Adrian Elkin, Darren Walker, helpline. “Amaze helped me to claim
Neil Man, Paul Nelson, Peter DLA for Katy. Lizzie was really great
Mapledoram and Rob Boulton, at following up and helped me double
whizzed around the very chilly check all the forms. I wouldn’t have
marathon route in the first ‘BM Ride’ - been able to do that without you,”
a 50 kilometre bike ride at the crack of she said.
dawn - raising over £2000 as a team! Katy attends the Hopscotch
Not far behind Children’s Nursery in Peacehaven,
were heroic 10K where with specialist one to one
Last year’s Eastbourne 10k quick out the gate support she is learning to
runners Caraline
communicate using Makaton and
Glass, Magdalene Eastbourne 10K PECS.
Haywood and Paul
Amaze is excited to be one of the
Mickleburgh. Hot
beneficiary charities of the popular
on their heels came Harvey with dad
Malcolm Stringer Eastbourne 10K. If you’re an
our inspiring
Eastbourne local, come out and cheer
marathon runners: Aaron Smithson,
with us! The race starts and finishes at
Holly Cleasby, Ian Peggs, Malcolm
the Middle Prom between the RNLI
Stringer, Michael Tink, Paul Evans and
museum and the bandstand on
Toby Merrett.
Eastbourne seafront on Sunday 30th Katy and Rebecca Reilly with Jack Collington
June from 9am.
Huge thanks to Sue Fry from Small “Because of the DLA money, Katy
Fry Fitness Events, and Liz Lumber for can now go to nursery four days a
organising this seafront race and week.” Rebecca explained.
raising awareness of Amaze and of our Jack has never done a bungee jump
Amazing Futures project in before but as soon as he heard about
Lisa Smith-Wallace, London Marathon runner
Eastbourne. the Beach Life bungee said, “I’ll do
Thanks to Lisa Smith-Wallace, that!” He’s proud to be doing the
Amaze also had a super speedy jump for his little sister and Amaze.
London Marathon runner. Lisa’s time This race is full now, but we’re
Fancy taking the plunge? Register
was an amazing 4 hours 33, and she’s always looking for people willing to
today via VisitEastbourne.co.uk and
individually raised well over £1,400. get their running shoes on for Amaze,
select Amaze from the dropdown
Thank you so much to all our so get in touch if you think this could
menu. Registration is £20.
runners and riders for your hard work be you. Or if running isn’t for you, how
Alternatively contact Jo for more
raising money for families with about cycling? A bake-off more your
information and a Bungee Jump
disabled children. A fantastic team, style? Contact Jo on 01273 234014 or
Fundraising pack (contact details in
keeping Amaze running in many ways. email jov@amazesussex.org.uk
the green box.)16 • out of amaze MAY 2019 events, courses and workshops
Amaze workshops this summer
SENDIASS workshops DLA and PIP workshops
Free sessions for parents from our SENDIASS advice team: Free for parents and professionals from Amaze’s disability
SEN Support - what to expect from SEN Support and how to benefits expert Lizzie:
make sure it is working well to help your child in school. How to claim DLA - identify whether your child is likely to
Brighton Thurs 13th June get DLA and learn how to make a strong claim.
Bexhill Thurs 23rd May (next in September) Brighton Weds 26 June
Education Health and Care plans (EHCPs) - how to request Crowborough Mon 8th July
the Education Health and Care needs assessment, get the How to claim PIP – learn how claiming PIP is different from
most out of the process and end up with a good plan for DLA and how to involve your son or daughter so they are
your child. ready for the face to face interview.
Brighton Thurs 20th June Brighton Tues 4 June and Weds 3 July
Eastbourne Thursday 27th June Crowborough Tues 25th June
Annual Reviews - understand the Annual Review process
and get tips on how to use it to get the best from your All these Amaze workshops are free and
child’s plan. available to families in Brighton & Hove and
Brighton Thurs 4th July East Sussex.
Crowborough Tues 9th July To find out more and book, email
Preparing for Adulthood and Annual Reviews from Year 9 info@amazesussex.org.uk
onwards – will run in Brighton and East Sussex in
or call 01273 772289.
September. Reserve a place now.
amazesussex.org.uk/events
Seeking East Could you help sponsor this newsletter and get great
Sussex Trustees publicity? Email nickyb@amazesussex.org.uk now.
We’re seeking three people living
or working in East Sussex to join our We’d like to thank Wellesley Charitable Foundation,
Board of Trustees to help ensure we the charitable arm of Wellesley Wealth Advisory, Sussex
make the best possible use of our -based financial advisers, for its contribution towards
funding to help families there. the costs of producing this newsletter. Wellesley
We particularly welcome Charitable Foundation helps ill or disadvantaged
applications from parent carers, children and their families in Sussex and the surrounding counties. For more
business owners or SEND information, visit wellesleycharitablefoundation.co.uk
professionals.
If selected you would be provided
with a comprehensive induction and
join our fabulous trustee team
Amaze helpline:
(currently all parent carers, but also For information, advice and support, call 01273 772289.
skilled professionals in accountancy, Monday to Friday, 9.30am to 2.30pm
law, PR, marketing, strategy and
SEND). Brighton East Sussex
This is a voluntary role, requiring Community Base, Suite 11, Highlight House,
you to attend five meetings a year 113 Queens Road 8 St Leonard’s Road,
(normally during the school day). We Brighton BN1 3XG Eastbourne, BN21 3UH
can pay travel expenses. T: 01273 772289
To find out more, or express an E: info@amazesussex.org.uk
interest, please email W: amazesussex.org.uk
rachel@amazesussex.org.uk. Amaze Brighton and Hove • UK Company Limited by Guarantee no: 3818021 • Registered charity no: 1078094You can also read
