easter newsletter 2013 - Parent Carer Council for Cornwall

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EASTER NEWSLETTER
2013
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Directors Report
Well lighter evenings and warmer weather are hopefully on their way and I
imagine you are all looking forward to the Easter break with your families.
There has certainly been a lot happening since I last wrote to you all, and like
many organisations in Cornwall we are concerned about funding for all
support groups, who have been there to support families in Cornwall. Parent
Carer Council will work hard to ensure the views of parents are heard when it
comes to organisations losing funding and will support them however we feel
appropriate.
We have continued to be busy in the Pathfinder project and are pleased that
additional funding from the Department for Education has been made
available to the local authority to ensure the work is supported until 2014.
We Contact a Family and Face 2 Face will be holding a family fun day in
April to help raise funds for Ellies Haven details are available in this
newsletter and we look forward to seeing some of you there.
Parent Carer Council always welcomes any views or information which you
feel will be of interest to our families, please contact us at any time.
I wish you all an enjoyable Easter
Kay Henry Chair and Director
Spa Day
On 28th February we held another Spa Day for parent carers. This time
at the Penventon Hotel so we include our members from the west of the
county. These events are financed through a grant from Cornwall
Community Foundation and we will be applying again and hope to be
able to offer active memebers another relaxing
event.
Our next Parent Participation training event will be
held on 25th April at the Victoria Inn, Roche.
For more details see page 9.
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Pathfinder Progress Report
The latest pathfinder Progress Report ( to be found at http://
www.education.gov.uk/childrenandyoungpeople/send/b0075291/greenpaper/pathfinders.xml) has been issued this month with this mention of
Cornwall’s work from page 17
‘Cornwall credits the success of its personal budget activity to the
commitment shown by parents and professionals in supporting its
development.
Work on personal budgets began with consultation meetings, facilitated by
Cornwall’s Parent Carer Council, to communicate what was being
proposed and to listen to parents’ views. Following consultation and early
testing, the key success factors identified were participation, choice and
control, co-production and person centred planning. What works well, they
say, is keeping children at the centre of service development. In Cornwall,
five pathfinder families are now in receipt of a personal budget, with further
families identified. Consultation with families, young people and
professionals is continuing on an ongoing basis to ensure that learning
informs further refinements to the process.’
In recognition of the PCCC’s involvement we have recently received the
following:
‘I am delighted to share with everyone that the Pathfinder in Cornwall has
been extended for another 18 months until September 2014. This will
enable us to continue service developments for disabled children, young
people and their families on important changes to single assessments, joint
education, health and social care plans and personal budgets. A number of
families have already been involved in working groups and in piloting plans
and budgets, and I would like to thank everyone involved for their creative
contributions and enthusiasm. Unusually, I would however, like to single
out one person’s contribution from PCC, Kay Henry, as Chair of the Parent
Carer Council has been an excellent representative for Cornwall’s Parent
Carer Council, championing what is happening in Cornwall and highlighting
what still needs to happen. In a recent meeting with the Department of
Education, Kay was professional in her presentation and passionate about
why services need to change and develop for disabled children, young
people & their families, ensuring that your collective voice was heard at the
highest level’.
Best wishes, Yvette Yates
Senior Manager Disabled Children & Therapy Service
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LEARNING FROM PATHFINDER PARENT CARER
FORUM AREAS
The aims of this Conference were:

To provide parent carer forums in pathfinder areas the opportunity to
share and explore the learning, achievements and challenges that
have been presented throughout the pathfinder programme

To test the early findings of the initial interviews with forums in
pathfinder areas

To provide an opportunity for forum representatives to have a direct
dialogue with the Department for Education, Department of Health,
and Mott McDonald about their experiences

To identify the key learning that needs to be shared and resourced
with non pathfinder areas

To consider the key messages that needs to feed into the SEND
legislation developments.
A member of the PCCC attended and this is what she discovered:
This conference was an event where all counties involved in the Special
Educational Needs and Disability (SEND) Pathfinder were represented by
parents who have been involved in this work. Across the UK 600 families
are trialling Personal Budgets.
It was interesting to hear both the highs and lows, and to see that certain
areas of the work have raised issues right across the board. Namely, what
will happen to the children who don't meet the criteria for the new single
assessment and Personal Budget? Something which should be dealt with
and publicised across parent forums in the future.
The rest of the UK will now be expected to put the early findings and
recommendations into practice, and up train staff. Academies, free schools,
Further Education and 6th form colleges, as well as independent schools
and providers will have the same SEN duties as maintained schools.
One good thing I returned with was, that it seems authorities providing
services for our families are realising the importance of listening to and
acting on the input from parents, and also parents are becoming more proactive realising that they have a voice and are respected as people who can
help achieve efficient effective services.
For an example of good practice you can go on the internet and see how
several small areas up north got together to form a single pathfinder area
calling themselves SE7, and see their local offer.
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http://www.se7pathfinder.co.uk/se7-local-offer
If you would like to learn more about how these changes could affect you,
please contact
Kay Henry (Parent Carer Council) on 079730763332, or
Personal Budgets
Cornwall credits the success of its personal budget activity to the
commitment shown by parents and professionals in supporting its
development.
Work on personal budgets began with consultation meetings, facilitated by
Cornwall’s Parent Carer Council, to communicate what was being proposed
and to listen to parents’ views. Following consultation and early testing, the
key success factors identified were participation, choice and control,
co-production and person centred planning. What works well, they say, is
keeping children at the centre of service development. In Cornwall, five
pathfinder families are now in receipt of a personal budget, with further
families identified. Consultation with families, young people and
professionals is continuing on an ongoing basis to ensure that learning
informs further refinements to the process.
Parent Carer Council always ensures a parent
representative is available to attend all strategic
group meetings for Early Support in Cornwall, and
we are very pleased with the way things are
progressing.
Currently there are approximately 640 children and young people accessing
an Early Support team around the child meeting across county.
The number of children and young people has almost doubled in the last 18
months and there has been a number of young people 16 years and older
accessing Early Support. This is excellent news as many families, schools
and colleges had the impression Early Support was for 0-5 when in fact the
age range currently is 0-19 years.
Information about Early Support is available on the Family Information
Website.
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PCCC Conference
Our conference at
Atlantic Reach was
attended by over
60 parents carers
with many
organisations
displaying their
information stands
Presentations were
delivered by Vicky Allan
Shortbreak services, Tracey
Bailey & Sue Coleman
Accessible Childcare to
discuss change, Kelvin
Carers Service discussing
what their service offers and
Rebecca Pollington
attended to give an update
on Early Support
In the afternoon Liz
Farmer, Janice Jenner
and Jane Jones led a
workshop about
Keyworking and Adele
Nankervis and Cathy
Galsworthy led on
Parents views on
education.
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If the above links to the questionnaire don’t work the information
can be found on the FIS website in the Parent and Carer Zone
www.cornwall.childrensservicedirectory.org.uk
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9
This service will be launched in Cornwall on
23rd May 2013
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In November last year we asked parent/carers who it was
relevant to about funding for sixth form students, at a
request from Rob Smith the deputy head at Doubletrees
school. We would like to feedback for the parents who
responded.
Rob Smith along with Steve Gilbert MP had a meeting with Michael Gove
Education Secretary to discuss funding at Doubletrees and other special
needs schools in December, through this meeting not only was Rob able to
secure the correct funding for special schools in our county, but managed to
directly influence the government policy in a way that will have a positive
impact for special schools nationally for their sixth form students- and the
Education Department will now move to real time calculations for future
grants for schools. Parent Carer Council would like to say thank you to Rob
and Steve Gilbert who responded quickly once he had the request from
Doubletrees school.
Parent Participation
At the heart of what we aim to achieve is the need for effective Parent
Participation. There are many ways you can participate, not just going to
meetings. We sometimes need help in producing the "Whenever You're
Ready Packs" or to help man one of our stands at events we attend, this is
an excellent opportunity to meet new parents.
On the following page we are advertising our next parent participation
training event an ideal opportunity to come along and find out how to
become an active parent.
If you would prefer to have an informal chat about how you could become
involved please contact:
Kay Henry
07973 763332
k.henry61@btinternet.com
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Post 16 years report, focussing on schools, colleges and special schools
In 2008, a new law was passed that makes important changes for all
young people in England. The new law - the Education and Skills Act
2008 - says that by 2013, all young people in England have to stay on in
education or training at least part-time until they are 17 years old. By
2015, all young people will have to stay on in education or training at least
part-time, until they are 18 years old.
The Parent Carer Council for Cornwall (PCCC) were interested in how
Cornwall is preparing to accommodate the increase in young people with
SEND, particularly learning difficulties , as a result of this new law.
Members had been contacting us to ask how this was going to affect their
young people as they had not been given sufficient information by schools
and colleges. It was felt that some research into local provision could be
undertaken and funding was secured from the Pathfinder in October 2012
to complete the project.
Conclusions
This report threw up some really interesting results:
A lot of schools declined to participate in the research, where they did
they didn’t anticipate any big changes.
Colleges were confident they were well prepared and flexible to meet the
changes.
Special schools where the students continued to 19 years anticipated
little change and were able to absorb the changes more easily. Here they
were looking at changes to the curriculum. They aimed to make plans
aspirational and student led. They requested better access to advocacy
for their students as well as better links to colleges.
Parents felt they were not well informed. There was no clarity about the
role of advocacy and the involvement of parents in the process. There
was general concern and this was extreme in the case of parents whose
children were at Pencalenick. In this case there was a great deal of
insecurity and the acknowledgement that there was no establishment in
Cornwall suitable for the student group concerned.
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Recommendations
Via this report the PCCC has made the following recommendations to the
local authority and Pathfinder, to meet the gaps identified in the research:
1. Development of a process where good practice can be shared between
schools and colleges.
2. Work to ensure that plans created in school can be effectively passed to
colleges.
3. Identification of required training for staff teaching post 16 years
students.
4. More transition advice and help across the board. Better access to the
Transition Mentors. Better access to advocacy for young people. Support
and training for parents to help them best help their young person through
the process as the focus rests more with the young person. Advice for staff
around working with families and young people and the Mental Capacity
Act.
5. Development of services up to 19 years in county specifically for
Pencalenick students, of particular necessity as this student group will have
heightened anxiety about change due to their condition. This would create a
‘level playing field’ for these young people in common with those in other
special schools.
6. Expectation that the curriculum for those with additional needs and post
16 years is outlined in the establishment prospectus and website.
7. Clarity over transport issues. It is assumed students will receive
transport from the local authority if they received it prior to 16 years. Any
transition process needs to be seamless.
Whilst it is acknowledged that the focus is now on
the student, there needs to be better sharing of
information between school and home, improved
use of school websites and distribution of the
excellent local authority leaflets (appended).
Finally it is recommended that follow up research
commissioned in October 2013 to explore the
destinations of the young people with learning
difficulties and/or disabilities.
is
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Cornwall Parent Partnership Service is pleased to be able to offer the
following dates and venues for outreach appointments for parents /
carers with a Parent Partnership Officer to discuss and receive advice
about any educational issues around special needs they are having
regarding their child’s education.
PLEASE NOTE: These appointments are on an appointment basis only
and are NOT drop ins. Please call 01736 751921 or email
pps@disabilitycornwall.org.uk to make an appointment.
VENUE
Camelford
Children’s Centre
DATE
Thursday 7th March
2013
TIME
10.30-1.30
St Dennis
Children’s Centre, St
Dennis
Tuesday 19th March
2013
10-2
Liskeard
Children’s Centre
Thursday 18th April
2013
10-2
Porthleven
Children’s Centre
Wednesday 24th April
2013
10-2
Saltash
Children’s Centre
Tuesday 30th April
2013
10-2
Tregony
Children’s Centre
Wednesday 2nd May
2013
10-2
Delaware
Children’s Centre
Friday 3rd May
2013
10-2
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Ellie’s Haven Makes Progress
Ellie’s Haven has taken a big step towards
its goal of providing holidays to families with
children suffering long-term and life-limiting
illnesses.
The Looe-based charity founded by Julie and Nigel Libby now hopes to
start offering holidays in Spring 2015, having completed the purchase of
a property in Duloe last September.
Ellie’s Haven has planning permission to extend and adapt the 6bedroom house. It plans to build circular lounge, convert a large
garage/workshop into a multi-purpose hall and link it to the house via a
new vestibule. The ground floor of the building will also be re-organised
and fitted out with equipment for severely disabled children.
A self-contained flat for able-bodied residents will also be remodelled
and renovated enabling Ellie’s Haven to provide holidays for a single
large family or two smaller families.
The building work and fitting out is expected to cost in the order of
£250,000, so fund-raising is still a big priority for the charity. It hopes to
obtain grants from trusts that will enable it to start construction this
year.
Julie and Nigel understand the importance of holidays to families with
severely ill children. Their daughter Ellie sadly passed away in January
2012 just a few weeks before her seventh birthday. The couple
previously had a little boy, Thomas, who also had complex medical
problems and died aged 14 months.
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Easy News
You might like to take a look at the first
edition of ‘Easy News’ a new newspaper
specifically designed for people with learning
disabilities but will help others as it has photo
symbols. Politics and the news are often
inaccessible to people with learning disabilities because of the use of
jargon and difficult language despite a high demand for it. The Charity
United Response have been given a year of funding to produce it from
the Big Lottery Fund. I think it’s very good!
To take a look go to http://www.unitedresponse.org.uk/press/campaigns/
easy-news/
CARERS RIGHTS
Carers Rights is a Carers led Charity which provides a free
and independent Advocacy Service for Carers of people with Learning
Disabilities in Cornwall. It also recruits volunteer Advocates and provides
a comprehensive Training, support and supervision programme for
volunteers.
Since 2011 it has been a partner in Cornwall Carers Service, providing 2
specialist Learning Disability Carer Support Workers who provide
information on benefits and services and give emotional support to
Carers; they also facilitate Carer Support Groups. The Forums and
Event Co-ordinator and 2 part-time admin staff have established 9
Carers Forums in Cornwall. The Carers Forums enable all Carers to
have a voice. Minutes of the Carers Forums are anonomised to enable
Carers to openly discuss any issues which affect their Caring role, and
are published on www.cornwallcarers.org.uk website. The issues are
taken forward to the Carers Partnership Board, and the outcomes are
reported back to the Carers Forums by their CPB representatives.
For more information contact: 01872 274586
Marion.greenwood@carersrights.org.uk
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Bedroom Tax Explained
April is fast approaching, with various welfare reforms
coming into effect one of which is the change to Housing
Benefit usually known as the "bedroom tax".
Essentially, this means that most people who rent their home from the
council or a housing association, and have more bedrooms than they are
judged to require, will have their benefit reduced – by 14% of their rent for
one extra room or 25% if they have two spare rooms.
There are some exceptions. The rules do not apply to anyone of pension
age. If you have a disability that means you require care overnight, then you
are allowed a room for the carer to sleep in. If you live in a property that has
been specially adapted to meet your needs, and it would be too expensive
or difficult to move, then you can apply to the council for a discretionary
housing payment. Extra funds have been provided to pay a top up to people
in this situation, but the amount of money is finite, and once it has been
allocated, there won't be any more available until the following year.
Not surprisingly, many people with a disability fear that they will be affected
by this new rule, which does not allow for an extra room to store bulky
equipment such as a hoist or power chair, for example, and does not
consider the possibility that you may need to sleep alone sometimes,
because of illness.
If your housing benefit is reduced, you should get advice from a welfare
adviser, who may be able to help with taking further action
Passports for kids in wheelchairs
The NHS and the local authority have re-designed an
element of the wheelchair service, putting children at
the centre, by providing the child with a wheelchair
passport at point of issue of their NHS wheelchair.
If a child travels on local authority provided transport
and has a wheelchair they will need a ‘passport’ to
travel in their wheelchair.
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The passport is proof that a risk assessment has been completed and
shows that the wheelchair is as safe as it can be for the child to travel in.
Previously, the NHS would issue a wheelchair and then families would have
to organise a separate assessment for a passport (which is provided by the
local authority transport department). Without the passport children in
wheelchairs are not allowed to travel on the local authority provided
transport and this meant that often children could not attend school
sometimes for up to two weeks until a separate assessment appointment
was made and completed.
Now the NHS provider of wheelchairs, Millbrook Healthcare, will undertake
the passporting assessment at the same time as the wheelchair is delivered.
This should mean that there are no more delays in
accessing school.
The new system started on 1st February 2013. If your
child is due for a new wheelchair and travels in local
authority provided transport to school, you will be
asked about this during the wheelchair assessment
and this will trigger the process.
We hope that this small re-design to this service will
make a difference by making the system work around
the child and families needs and not the needs of the
bureaucracy.
EASS is there for individuals from anywhere in Great Britain
who need more expert advice and support on discrimination
than is available from local organisations. As well as explaining
what rights and remedies you have under discrimination
legislation, the service can help guide you on informal
resolution or mediation to solve a problem; or help you find an accessible
legal service, establish whether you are eligible for legal aid, or if not,
prepare and lodge a claim on your own account. The EASS can't provide
representation in court, or give advice on proceedings once claim has been
issued. The service isn't available for the use of solicitors or other
professional advisers.
For more information contact: 0800 444 205
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Accessible Childcare in Practice
I have not inquired with the Family Information Service about finding an
experienced child-minder until this year. I suppose like many parents of a
child with a severe learning disability, complex epilepsy and autism, I did not
think there would be anybody who would be prepared to care for my 15 year
old daughter.
The need arose when I had the opportunity to enrol on a course for
“Preparation to Teach in the Lifelong Learning Sector “or PTLLs. The only
course available was in Redruth and it would not finish until 4.30pm. This
meant I would not be home for her bus. I called FIS and was soon talking to
an advisor whose job it was to find a suitable child-minder.
Within a week I had the number of a lady who lived in Par and was willing to
have Amber after school. Amber and I went to meet with her a couple of
times, so they got to know each other and be familiar with her home. Over
the next 5 weeks Anne picked her up from Doubletrees School and took her
back to her home, where they walked Rosie the dog( who Amber adored),
down to Par Beach and had a lovely time together.
It turned out to be a great experience for all of us and Anne even
said she was not sure if she could look after a 15 year old
disabled young person, but she was so glad she did and Amber
had enriched her life experience! We will be keeping in contact
and Anne will be part of Amber`s “Circle of Friends” which is so
important to her future.
FREE ART ACTICITIES for 11—16 year old with ASD
VENUE: Truro Community Library, Union Place, Truro,
TR1 1EP
DATE: Friday 12th April
TIME: 11am – 1pm and 2.30pm – 4.30pm
DRESS: Don’t wear your best
EXTRA INFO: The event is supported by a local art
therapist and volunteers but please bring a parent/
guardian/carer with you
If you would like to come along to the event please call
Katie on 07436265929 or email katie@fixers.org.uk
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Skiability gives disabled children
and adults, along with their
families and carers,
the chance to try waterskiing,
and they have lots of
specialised adapted
equipment for different levels of
needs, including sofa rides behind the boat for the
least able.
Wetsuits, buoyancy aids and helmets
are all supplied.
The dates/venues are as follows:
June 6th - 8th Siblyback Lake
June 9th -16th Stithians Lake
Booking will be on a first come/first
served basis
For more information contact:
Doug on 07811 172600
doug@skiability.co.uk
http:skiabilitywatersports.co.uk/
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Kay Henry
07973 763332
k.henry61@btinternet.com
Cathy Clarke
07591 019548
cathypccc@aol.com
Freepost RSUH-ZCCS-LJLS
48 Springfields
Bugle
St Austell
PL26 8SJ
www.parentcarercouncilcornwall.org.uk
Don’t forget you can register your
mobile number to receive information from PCCC
just text SMS & your name to
07591 019548
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