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Summer Bulletin

2013

We are the only UK-wide charity providing advice, information and support to the parents of all disabled children no matter what their condition. Our services are for families with children

aged 0-19 and up to 25 if your child is not yet in adult services. Registered in England and Wales: Number 1633333

Contents Contact a Family Team 2 Staff numbers and emails Campaigns 3 New and on-going campaigns News 4 Latest news from Contact a Family In Focus 5 Family’s stories from around the region Resources 7 Useful resources for families What’s going on? 9 Events, workshops, and groups Who to ask? 13 Who to contact about what’s going on Useful numbers and contacts 14 A who’s who guide Registration 16 Register for updates, bulletins and newsletters

Call our helpline for personalised benefits advice...

Contact a Family has always offered advice about the benefits system for parents of disabled children, however we are now able to offer appointments with our welfare experts to discuss your situation. We can then take you through the latest relevant benefits advice and run through any other financial help you may be entitled to maximise your income.

Senior Parent Adviser and welfare rights expert, Derek Sinclair said: "This will provide a badly needed source of free, confidential, high quality and up to date advice for parents. Our advisers will make sure that parents have the right information to make informed choices about issues: • moving into work • benefit options when a child reaches 16 • or how to use self-directed support to take

greater control over how services are provided to their disabled child. "

We will also be offering a series of workshops across England to raise awareness of the new benefits system. Get in contact with the north west team to find out more.

Contact our team of experts on our freephone helpline on 0808 808 3555, email us or post a question on our Facebook page.

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Contact a Family Website www.cafamily.org.uk/northwest National Freephone Helpline 0808 808 3555 (Mon – Fri 9.30 - 5.00) free from both landlines and mobile phones. The Language Line interpretation service is available for those whose first language is not English. North West Team You can e-mail general enquiries to the team at northwest@cafamily.org.uk or get in touch with individual team members below. Corriena Tomkinson – Parent Advisor (North West) corriena.tomkinson@cafamily.org.uk Telephone 01772 812 294 Corriena is based in Lancashire but provides advice, information and support to parents across the North West region. Catherine Tyrie – Parent Advisor (North West) catherine.tyrie@cafamily.org.uk Telephone 0161 445 3749 Cath is based in Manchester but provides advice, information and support to parents across the North West region. Diane Astill – Parent Advisor (Cumbria) diane.astill@cafamily.org.uk Telephone 016973 23309 Diane is based in Cumbria and provides advice, information and support to parents. Diane Bridge - Parent Advisor (North West) diane.bridge@cafamily.org.uk Telephone 01704 532256 Diane is based in Lancashire but works across the region as a children’s centre advisor. Carolyn Deveney – Parent Carer Participation Advisor (North West) carolyn.deveney@cafamily.org.uk Telephone 07905 917 066 Carolyn will be supporting parent carer forums across the region. Karen Robinson –Regional North West Manager karen.robinson@cafamily.org.uk Telephone 01706 220 578 Karen manages the work of the parent advisors in the North West region co-ordinating the teams workshops, information days and events. Volunteer Parent Representatives Ruth Card (St. Helens area) ruth.card@cafamily.org.uk Telephone 01942 721 323 Ruth is the Area Volunteer Parent Rep, she is the parent of a disabled child and offers peer support and local signposting for parents in the St. Helen’s area.

Why do we campaign ?

We campaign to remove the barriers, which prevent families with disabled children participating in everyday life. We want to ensure that government policy, as it relates to families with disabled children, delivers the best outcomes for all families acrossus in research or what we learn from working with them.

Over the last few months we successfully argued that parent carersWorking Tax Credit hours rule change, from the bedroom tax where the child with a disability cannot share a room. Tconsultations, media work and working with other disinfluence government plans to minimise the negative effects of changes to the benefits system.Our on-going campaigns include:

• Reducing poverty...• Stop the DLA takeaway...• Stop the cuts to council tax benefit...• Helping to make families stronger...• Better access to information and services for families...

For more information on our campaigns and www.cafamily.org.uk/get-involved/campaigning/stronger together.

The Hardest Hi t Campaign Contact a Family is a member of the Disability Hit campaign. The campaign has updated its disability benefits myth buster that exposemany cuts to disabled people’s support have happenedrecent news and myth busting f

• Disability benefits are not being cut; • DLA changes are the result of consultation with disabled people; • It’s really easy to get DLA without checks; • People have received DLA for many years and never been checked again; • DLA fraud is high and £630m in DLA is overpaid every year; • The costs of DLA have become unsustainable; • If you claim ESA and you are found• The government wants to make independent living for disabled people a reality

Help take action to end the care crisis...The current system is chronically underfunded, leaving thousands of disabled people and their carers without the support they need. We needanyone else interested to contact Jeremy Hunt MP directly, as it’s such a critical momentfight to end the care crisis as the spending review is coming up. http://e-activist.com/eaaction/action?ea.client.id=31&ea.campai

If you do write to your local council or MP to help with any of thesePolicy Officer) an e-mail on

Campaigns

?

We campaign to remove the barriers, which prevent families with disabled children participating in everyday life. We want to ensure that government policy, as it relates to families with disabled children, delivers the best outcomes for all families across the UK. We base everything on what parents have told

or what we learn from working with them.

Over the last few months we successfully argued that parent carers should be exempt from the Working Tax Credit hours rule change, and were successful in making disabled families exempt from the bedroom tax where the child with a disability cannot share a room. Tconsultations, media work and working with other disability organisations, we continue to try and influence government plans to minimise the negative effects of changes to the benefits system.

campaigns include:

Reducing poverty... Stop the DLA takeaway...

cuts to council tax benefit... Helping to make families stronger... Better access to information and services for families...

For more information on our campaigns and how you can help us, join us at involved/campaigning/ or follow us on Facebook and Twitter.

t Campaign ...

Contact a Family is a member of the Disability Benefit Consortium which supports the Hardest Hit campaign. The campaign has updated its disability benefits myth buster that exposemany cuts to disabled people’s support have happened, or are in the pipeline.

myth busting facts at www.thehardesthit.wordpress.com/Disability benefits are not being cut; DLA changes are the result of consultation with disabled people; It’s really easy to get DLA without checks; People have received DLA for many years and never been checked again;

£630m in DLA is overpaid every year; The costs of DLA have become unsustainable; If you claim ESA and you are found 'fit for work' in the assessment you were faking it.The government wants to make independent living for disabled people a reality

action to end the care crisis... The current system is chronically underfunded,

of disabled people and their carers without We need parents, professionals and

anyone else interested to contact Jeremy Hunt MP directly, as it’s such a critical momentfight to end the care crisis as the spending review is coming up. link to the online action is

activist.com/eaaction/action?ea.client.id=31&ea.campaign.id=19846

local council or MP to help with any of these campaignmail on una.summerson@cafamily.org.uk and let her know.

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Get�

involved!��

government policy, as it relates to families with disabled children, delivers on what parents have told

should be exempt from the and were successful in making disabled families exempt

from the bedroom tax where the child with a disability cannot share a room. Through ability organisations, we continue to try and

influence government plans to minimise the negative effects of changes to the benefits system.

, join us at us on Facebook and Twitter. We are

Benefit Consortium which supports the Hardest Hit campaign. The campaign has updated its disability benefits myth buster that exposes how

or are in the pipeline. Read the www.thehardesthit.wordpress.com/ Myths include:

DLA changes are the result of consultation with disabled people;

People have received DLA for many years and never been checked again;

assessment you were faking it. The government wants to make independent living for disabled people a reality.

anyone else interested to contact Jeremy Hunt MP directly, as it’s such a critical moment in the link to the online action is

gn.id=19846

campaigns, please drop Una (our and let her know.

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News

Important advice on challenging bedroom tax decisio ns ... Contact a Family has put together two template letters to be used by parents where a disabled child's need for their own bedroom is not being taken into account by their local housing benefit office. For more information and to download the template letters please go to www.cafamily.org.uk/news-and-media/beat-the-bedroom-tax/

Shocking scale of illegal school exclusions reveale d...

The children's commissioner for England, Dr Maggie Atkinson, has published the findings from her school exclusions inquiry in her report, Always Someone Else's Problem. The commissioner's report is based on research, school visits and a teachers' survey and examines the scale and nature of illegal exclusions in England's schools.

The children's commissioner's report finds three main reasons for illegal exclusions.

• Parents, children and even teachers don't know what the law says. This means that schools can act illegally "by accident" and that parents and children don't know the school has done anything wrong.

• With the partial exception of Ofsted, no public body is doing enough to identify and reduce illegal exclusions. This means illegal exclusions are unlikely to be reported or, if they are, it is unlikely that there will be anything done about them. Local authorities and the education funding agency are the bodies which ought to be tackling this issue.

• There is no meaningful sanction against excluding illegally, and the incentive structure for schools may, unintentionally, encourage some head teachers to do this.

Schools should be heavily fined if they falsify registers to cover up illegal exclusions and head teachers should also face existing sanctions of prosecution if they illegally exclude children, the children's commissioner Maggie Atkinson said in today's report.

In response to the report Srabani Sen, CEO of Contact a Family said: "We welcome the fact that the report published today highlights that children with SEN are more likely to be illegally excluded from school. This mirrors our own research, Falling Through The Net, that revealed disabled children are routinely illegally excluded from school - sometimes on a daily or weekly basis. For disabled children who already need more support than their peers, this withdrawal of education is having a devastating impact on their progress and attainment, as well as their mental health. In addition, parent carers of disabled children told us that illegal exclusions mean they are unable to work or are forced to take a lot of time off work. "Contact a Family believes it is vital that schools do everything possible to keep a child in school ... [and] there needs to be a clear duty on schools to assess and meet a child's disability or special educational needs alongside effective and clear routes to further assessment where specialist help is needed. Where exclusion is considered necessary, the correct legal process should always be followed to ensure minimal disruption to a child's education. These are essential if children with disabilities or special educational needs are to be able to fully access the school curriculum and be included in the life of the school and reach their potential."Education is a right for all children. Yet too many children with disabilities are being denied this right. This has to stop, now." Anyone concerned about any aspect of their disabled child's education should call Contact a Family's expert advisers on 0808 808 3555.

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In Focus Our new section ‘In Focus’, highlights inspirational stories from parents and carers of children with disabilities and special needs from around our region... This is Emma and Dylan’s story...

Finding opportunities for your child to try hobbies and extra-curricular activities can feel like another battle on the ‘to do list’ when you have a child with a disability. Despite children with disabilities having equally varied interests and personalities of their ‘mainstream’ peers, the activities available are often extremely limited and certainly aren’t as varied as the opportunities for mainstream children. With no disrespect to any organisations that do fantastic work putting on activities for children with disabilities, the choices do seem narrow often due to funding issues and certainly in our experience, didn’t tap into what my son was interested in. So here is our journey of ‘trying to get a social life’... My son Dylan is 7 years old and has Apert syndrome, Autism and a learning disability. We’ve tried many activities in the past; football, trampolining, drama... the list goes on! However, there has always a barrier for us. Either there are too many children so the noise in the room is overwhelming for him; there are other sensory things in the room so he becomes more interested in that than the activity, (a fan, light switches etc), or basically, he just doesn’t like the activity that much. Oh and of course the ASD trait of not coping when he loses a game (this makes any kind of sport or group game difficult!). This is before you even get to the issue of other children name calling or staring because he looks ‘different’. With all these factors it can seem like an uphill struggle just to find him a social life. So what did we do? We tried everything, and I have felt like throwing the towel in on many occasions, thinking there’s no way we’re going to access a mainstream activity, there are just too many barriers to it working out, but I continued to search. My partner Rob used to be in the Scouts as a child so I did some research into the type of activities they did and contacted my local scout group via email and put Dylan’s name down on the waiting list for Beaver Scouts. When the time came for Dylan to attend his first session I spoke to the Scout leader beforehand to ask what the plan for the session was and printed a visual timetable for him. I also drove him to the place that Scouts meeting takes place the week before, so he knew where we were going and we watched some videos about scouts online so he knew what to expect. Even CBeebies ‘Something Special’ have an episode about Scouts featuring ‘Scout Tumble’ which he loved! On his first few Scout sessions there were some negative comments by other children about him looking “weird” and a few stares, as well as some politely inquisitive children who maturely asked me about Dylan’s condition. I must admit I find it difficult when faced with negative comments about Dylan, so I asked the charity, Changing Faces for some support with this. Changing Faces went above and beyond sending me resources to give to the Scout leader of activities they could do to learn about visual difference. I received information about dealing with people’s comments and lot of support via phone and email about the matter which really made a difference to me. I also accessed resources from the National Autistic Society. Their parent-to-parent service came in useful to ask other parents if they have come across the same difficulties and what strategies they used and I decided to stick it out. I am proud to say that Dylan is now working towards his first Scouts badge! Despite having to complete a log book for his badge (which was far too challenging for his basic reading and writing ability), I contacted his teacher at school and she incorporated the log book work into his literacy time at school and a teaching assistant supported him in completing his own version of it. His version of the log was simpler and used photos and some writing to support evidence of his work towards the badge.

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In Focus

We are yet to do the activities suggested by Changing Faces, but look forward to involving the other Scouts in the process of learning about having a visual difference. I think it will benefit the whole group as well as Dylan, and hopefully other children with a disability that may join in the future. So I am happy to say its success at last! My advice to other parents who think their child would like to access a mainstream class, group or activity would be try everything and give it a go, even if it turns out to be a disaster (we’ve had a few along the way!). At least you tried and eventually you will find the right activity for your child. I would also say despite what any organisation says on their website about it being ‘open to all’, most mainstream activities for children are not accessible for children with additional needs and to be honest, most staff aren’t equipped to adapt things either. So be prepared to do a lot of the work yourself. I made Dylan’s visual timetables myself and I attend all his Scout sessions to support him and adapt the work for him during the session. That may not be what a lot of parents want to hear, but it does seem to be the reality if you want your child to get the most out of the session. It is worth noting that we also access activities that cater for disabled children too. Dylan goes to a cycling group that is for disabled children which is fantastic because I have to do very little to prepare him for that because it’s so accessible. So perhaps there’s something to be said for having a mix and a balance of activities that cater for disabled children while also accessing mainstream groups/classes. In case anyone else is thinking of joining Scouts, here are my ‘pros and cons’ list (particularly if your child has Autism): Pros 1. They wear a uniform (great for cuing your child into where they’re going and getting them

prepared to go) *Though it could be difficult if your child doesn’t like getting changed. 2. The sessions follow a routine. Easy to create a visual timetable for! 3. They do a mix of quiet activities and louder physical games. 4. It’s the same staff every week. 5. They have clear rules and boundaries. 6. They work towards badges which is a tangible and visual reward. They also work on

learning map symbols (great if your child loves symbols and great for visual learners) 7. Joining Scouts is relatively cheap compared to other classes/hobbies Cons 1. There may not be any other disabled children in the group, and they may have not had any

children with a disability in the group before, so prepare for a bumpy start. You face a few questions and stares from the other children.

2. Depending on the room it can get noisy during games time. Depending on the type of building they use there may be an echo which is distracting for some children with ASD.

3. The activities and language used will probably not be at your child’s level, so be prepared to speak up and say how your child needs the activity to be broken down. A Speech and Language therapist can help support you with ideas on how to do this.

Useful links: http://autismandscouting.blogspot.co.uk/; https://www.changingfaces.org.uk/Home; http://www.autism.org.uk/; https://www.facebook.com/autismandscouting

Thank you to Emma and her family for sharing their story in this edition of our newsletter. If you would like to share your story with other parents and professionals please e-mail catherine.tyrie@cafamily.org.uk or phone 0161 445 3749.

Falling into debt? Take a look at our new website section... Most of us have debts of some sort or another. However families with disabled children are more at risk of getting into debt as it costs more to raise a child with additional needs.answer some commonly asked questions around the subjecome up with a new section on our website

• Help with debt - where to get free and cpriority and non-priority debts.

• Debt, benefits and grants• Problems with borrowing

harassed by creditors.

If you'd like to know more or if you'd like a full benefits check, call our freephone helpline on 0808 808 3555, Monday-Friday, 9.30

KIDS launches their new KIDS have launched a new eLearning explaining the key points about impact on their family life. KIDS children, young people and their families. As sponsored by the Department for Education, parents and carers of disabled children and Anyone wishing to access the free http://elearning.kids.org.uk/login/index.phplong and short versions for ease of use. You can download it from the KIDS website:www.kids.org.uk/ information/100347/106207/106214/106217/ for_parents_and_carers/

Check out a n ew interactive website at Caudwell Children... Caudwell Children transforms the lives of disabled children across the UK. The national charity provides family support, specialist equipment, treatment and therapy, as well as staging Destination Dreams, a fully supported trip of a lifetime for children battling life-threatening and terminal conditions. Set up in March 2000, the charity has donated over £25million worth of services to help change the lives of thousands of disabled children with more than 500 different medical conditions. In their 13 year history the Charity has supported thousands of children from across the North West region and now hope to expand their services within local communities. Families caring for a disabled child are being urged to apply to Caudwell Children via their new interactive website launched earlier this year, which offers full information about the charity’s practical and emotional support. The website also offers a parents forum, online application service and the latest news about the charity. For more information www.caudwellchildren.com or call

Resources

Take a look at our new website section...

Most of us have debts of some sort or another. However research shows us that families with disabled children are more at risk of getting into debt as it costs more to raise a child with additional needs. We asked parent advisers on our helpline to answer some commonly asked questions around the subject of debt and have come up with a new section on our website under ‘advice and support’

where to get free and confidential debt advice, and an explanation of priority debts.

Debt, benefits and grants - information around benefits, rent arrears and debts.Problems with borrowing - more on borrowing and what to do if you are being

If you'd like to know more or if you'd like a full benefits check, call our freephone helpline on Friday, 9.30-5pm.

their new free eLearning suit...

eLearning package for parents and carers, aimed at explaining the key points about personalisation, personal budgets and how

KIDS is a charity that works with disabled g people and their families. As part of the ‘Making It Personal’

y the Department for Education, KIDS has created an eLearning suite aimed atcarers of disabled children and young people.

yone wishing to access the free eLearning can do so by creating an account at:elearning.kids.org.uk/login/index.php The Parent’s Handbook is still freely available in

long and short versions for ease of use. You can download it from the KIDS website:on/100347/106207/106214/106217/ for_parents_and_carers/

ew interactive website at Caudwell Children...

Caudwell Children transforms the lives of disabled children across the UK. The national charity provides family support, specialist equipment, treatment and therapy, as well as staging Destination Dreams, a fully supported trip of a lifetime for children

threatening and terminal conditions.

Set up in March 2000, the charity has donated over £25million worth of services to help change the lives of thousands of disabled children with more than 500 different medical

history the Charity has supported thousands of children from across the North West region and now hope to expand their services within local communities.

Families caring for a disabled child are being urged to apply to Caudwell Children via their new eractive website launched earlier this year, which offers full information about the charity’s

practical and emotional support. The website also offers a parents forum, online application service and the latest news about the charity. For more information visit

or call 0845 300 1348.

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Take a look at our new website section...

shows us that families with disabled children are more at risk of getting into debt as it costs more

We asked parent advisers on our helpline to of debt and have

onfidential debt advice, and an explanation of

nformation around benefits, rent arrears and debts. ore on borrowing and what to do if you are being

If you'd like to know more or if you'd like a full benefits check, call our freephone helpline on

aimed at ation, personal budgets and how they may

Making It Personal’ project, KIDS has created an eLearning suite aimed at

eLearning can do so by creating an account at:- The Parent’s Handbook is still freely available in

long and short versions for ease of use. You can download it from the KIDS website:- on/100347/106207/106214/106217/ for_parents_and_carers/

ew interactive website at Caudwell Children...

Caudwell Children transforms the lives of disabled children across the UK. The national charity provides family support, specialist equipment, treatment and therapy, as well as staging Destination Dreams, a fully supported trip of a lifetime for children

Set up in March 2000, the charity has donated over £25million worth of services to help change the lives of thousands of disabled children with more than 500 different medical

history the Charity has supported thousands of children from across the North West region and now hope to expand their services within local communities.

Families caring for a disabled child are being urged to apply to Caudwell Children via their new eractive website launched earlier this year, which offers full information about the charity’s

practical and emotional support. The website also offers a parents forum, online application visit

New guide s for Early Support... The National Children’s Bureaux have developed a number of useful information resources such as BehaviourChildcare; People you may meetdiagnosis; Looking after yourself; language and communication needsCerebral Palsy; and Learning disabilitiesearly support website at www.ncb.org.uk/early

Contact a Family videos on Youtube... There are now a number of helpful videos on YoutubeThey cover Welfare Reform; Housing Benhelpline have a short video on their services; Personal Budgets and Direct Payments; School funding and transport. You can access alhttp://www.youtube.com/watch?v=9XFbMKww7

Scope’s new resource ‘Right from the Start’... Scope have developed an A4 template booklet on Right from the Start Principles, which support professional good practice in working with families of disabled children with complex support needs at the time of diagnosis and beyond. Education Adviser, Nursing and Midwifery Councilthe template is founded on respect for parents and the value of their children as children first and foremost. It offers apolicies and procedures that ensure a quality service and to encourage individuals working in this area continuously to reflect on and enhance their practice. for free at http://www.scope.org.uk/help

Groups, j oin our Local Pare The Network is for support groups around England, to good practice with each other, whether your groupdisability or defined by a medical condition or syndromeSigning up will mean you get information and consultation opportunitiesthat affect the families who care for a disabled child. • A free magazine will be delivered straight to your doorstep

parent stories, latest policy, useful information and much more!• Your group will be promoted in our magazine• An opportunity to network wi• Support group sessions/workshops where there is a Contact a Family representative available• Resources specifically for the parent support groupIf you would like your group to join the Contact a Family Local Parent Support Group Network if you have any queries about the Network, please contact Adele Meader on adele.meader@cafamily.org.uk

Resources

s for Early Support...

ational Children’s Bureaux have developed a number of useful Behaviour; Autistic Spectrum Disorders; R

People you may meet; Useful contacts; General information; ; Looking after yourself; Multi-sensory impairments; Neurological Disorders

language and communication needs; Sleep; Visual Impairment ; Deafness and hearing lossLearning disabilities. To view or download the free guide,

www.ncb.org.uk/early-support/resources/new-information

Contact a Family videos on Youtube...

There are now a number of helpful videos on Youtube for you to access any time you want. They cover Welfare Reform; Housing Benefit; Short Breaks; Children andhelpline have a short video on their services; Personal Budgets and Direct Payments; School funding and transport. You can access all of these at http://www.youtube.com/watch?v=9XFbMKww7-c&feature=youtu.be

Scope’s new resource ‘Right from the Start’...

Scope have developed an A4 template booklet on Right from the Start Principles, which support professional good practice in working with families of disabled children with complex support needs at the time of diagnosis and beyond.

Adviser, Nursing and Midwifery Council and Chair of the founded on respect for parents and the value of their children as

children first and foremost. It offers a framework for organisations to develop effective that ensure a quality service and to encourage individuals

area continuously to reflect on and enhance their practice. http://www.scope.org.uk/help-and-information/publications/right

oin our Local Pare nt Support Group Network!

The Network is for support groups around England, to share ideas, top tips and good practice with each other, whether your group is non-specific in terms of disability or defined by a medical condition or syndrome, parent or professional led

information and consultation opportunities that affect the families who care for a disabled child. You will also receive

A free magazine will be delivered straight to your doorstep - full of the latest news; offering parent stories, latest policy, useful information and much more!

group will be promoted in our magazine, Connected. to network with other groups in your area, share ideas, tips and good practice

Support group sessions/workshops where there is a Contact a Family representative availableally for the parent support group

If you would like your group to join the Contact a Family Local Parent Support Group Network f you have any queries about the Network, please contact Adele Meader on adele.meader@cafamily.org.uk

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; Rare conditions; ; Living without a

Neurological Disorders; Speech, Deafness and hearing loss;

free guide, please visit the information-resources .

for you to access any time you want. efit; Short Breaks; Children and Families Bill;

helpline have a short video on their services; Personal Budgets and Direct Payments; School

Principles, which support professional good practice in working with families of disabled children with complex support needs at the time of diagnosis and beyond. Roger Thompson,

and Chair of the working group says founded on respect for parents and the value of their children as

framework for organisations to develop effective that ensure a quality service and to encourage individuals

area continuously to reflect on and enhance their practice. Downloaded information/publications/right-start-template

nt Support Group Network!

ideas, top tips and specific in terms of

parent or professional led. on issues

You will also receive

full of the latest news; offering

share ideas, tips and good practice Support group sessions/workshops where there is a Contact a Family representative available

If you would like your group to join the Contact a Family Local Parent Support Group Network or f you have any queries about the Network, please contact Adele Meader on 01799 543043 email

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Whats going on... Fancy the cinema? Try Autism Friendly Screenings...

The not for profit organisation Dimensions, have partnered with Odeon cinemas, Cineworld and Vue to offer monthly autism friendly screenings around the country. In these screenings

• The lights will be on low • The volume will be turned down • There will be no trailers at the beginning of the film • You'll be able to take your own food and drinks • You'll be able to move around the cinema if you like

The screenings are not just for people with autism. There are a number of sensory differences made to the cinema environment that can make the cinema more attractive to people with autism, but the screenings are for anyone that feel they would benefit. This might be someone with a learning disability, or it might be the family and friends of someone with autism or with a learning disability who want to enjoy a cinema experience together. To find out which cinemas near to you are participating in the scheme visit www.dimensions-uk.org . The website also has social stories templates. Social stories are used to describe what is going to happen so people know what to expect and how to behave. You can download and personalise the Social Story templates and use it to plan your trip to the cinema.

Interested in the ‘Including Young Disabled People Project’? Read on... Greater Manchester Coalition's Including Young Disabled People project is for any young disabled person (aged 15-25) within the Greater Manchester area. The project trains young disabled people to get involved with:

• Representing : Young disabled people need a voice - and there is nobody better than young disabled people to do that! Nobody knows the issues better than you do!

• Consultation : Young people can shape and express opinions on the services they

use. Let them know what you think!

• Information : Get involved in running the projects information resources. Help them write factsheets or keep the webpage up to date!

• Training : Get training to become a trainer!

And, importantly, all this counts as volunteering. You can bank your time with V Involved! The project is funded for transport, access and personal assistance support and they may even buy you lunch. There's a lot to this fun and dynamic project! For more information, take a look here: http://gmcdp.com/projects-and-services/consult-with-disabled-people-2/including-young-disabled-people or drop Brett Savage a line on 0161 273 5137 or email bsavage@gmcdp.com

Experienced stigma and discrimination?yourself through art... Contact a Family know through our experience of providing support and advice, that stigma and discrimination faced by aspects of everyday life. Parents feel that the negative judgements they experience are rooted in a lack of understanding of what daily life is like and the extra cost of raising disabled children.

Parents and carers attending these events discussed their family’s experiences of stigma discrimination. Common issues included: children’s behaviour being misunderstood, people making negative comments about children with disabilities and people’s lack of understanding about children’s conditions. Following on from the discussion we de

represent Blackpool so well?), provided by the artist. Some of the towers were decorated with words reflecting the discussions that had taken place; some were decorated with various artistic materials. The ‘Blackpool Towers’ have been displayed in Blackpool Central Library. We plan that they will form part of an exhibition of art work, completed in different parts of the country, focussing on stigma. We hope that this exhibition will be displayed in differCentres, and that it will help to raise the issue of stigma and

help to make change by informing others about the reality of having a child with a disability or additional needs.

Parents and carers who attended our eventtold us that they valued meeting other parents and expressing their feelings through art. We would be interested in hearing from you, about your family’s experiences of stigma and whether you would be interested in us running an art stigma e For more information please contact: Corriena Tomkinson, Parent Advisor on Corriena.tomkinson@cafamily.org.uk

Whats going on...

Experienced stigma and discrimination? Express

through our experience of providing support and that stigma and discrimination faced by families with disabled children

aspects of everyday life. Parents feel that the negative judgements they experience are rooted tanding of what daily life is like and the extra cost of raising disabled

We recently ran two events in Blackpool focusing on these issues. The events were held at the Together Centre, who provide a range of services for families in Blackpool who have children with disabilities or additional needs. Blackpool Council arts department helped us to plan this event and provided a local artist to work with us.

Parents and carers attending these events discussed their family’s experiences of stigma discrimination. Common issues included: children’s behaviour being misunderstood, people making negative comments about children with disabilities and people’s lack of understanding

Following on from the discussion we decorated models of Blackpool Tower (what else could represent Blackpool so well?), provided by the artist. Some of the towers were decorated with words reflecting the discussions that had taken place; some were decorated with various artistic materials.

e ‘Blackpool Towers’ have been displayed in Blackpool Central Library. We plan that they will form part of an exhibition of art work, completed in different parts of the country, focussing on stigma. We hope that this exhibition will be displayed in different venues, including Children’s Centres, and that it will help to raise the issue of stigma and

help to make change by informing others about the reality of having a child with a disability or additional needs.

Parents and carers who attended our events in Blackpool told us that they valued meeting other parents and expressing their feelings through art. We would be interested in hearing from you, about your family’s experiences of stigma and whether you would be interested in us running an art stigma event in your area.

For more information please contact: Corriena Tomkinson, Parent Advisor on 01772 812294 or email Corriena.tomkinson@cafamily.org.uk

10

through our experience of providing support and families with disabled children affects many

aspects of everyday life. Parents feel that the negative judgements they experience are rooted tanding of what daily life is like and the extra cost of raising disabled

We recently ran two events in Blackpool focusing on these issues. The events were held at the Together Centre, who provide a range of services for families

ho have children with disabilities or additional needs. Blackpool Council arts department helped us to plan this event and provided a local

Parents and carers attending these events discussed their family’s experiences of stigma and discrimination. Common issues included: children’s behaviour being misunderstood, people making negative comments about children with disabilities and people’s lack of understanding

corated models of Blackpool Tower (what else could represent Blackpool so well?), provided by the artist. Some of the towers were decorated with words reflecting the discussions that had taken place; some were decorated

e ‘Blackpool Towers’ have been displayed in Blackpool Central Library. We plan that they will form part of an exhibition of art work, completed in different parts of the country, focussing on stigma. We hope that this exhibition

ent venues, including Children’s Centres, and that it will help to raise the issue of stigma and

help to make change by informing others about the reality of having a child

s in Blackpool

experiences of stigma and whether you would be interested

For more information please contact: Corriena Tomkinson,

11

Whats going on...

Workshops around the region, our local offer... By working together and developing partnerships with other organisations across the North West we can offer free information sessions to parents and professionals. Sessions include general advice and information sessions and themed sessions which parents have told us they would like further information around. Information sessions for parents and professionals include:-

• ‘Contact a Family: who we are, what we do and how d o you contact us? ’ - A welcoming session on Contact a Family, aiming to help increase knowledge and understanding of the Charity, how we can help parents and professionals, and how to access our support and help.

• ‘Difficult behaviours that challenge us: developing understanding and getting support ’ – This session aims to increase your knowledge and understanding of the effects and causes of difficult or challenging behaviour issues, to discuss strategies that may help and sources of support and help that may be available to you.

• ‘Disability Living Allowance and Benefits ’ –This session aims to help increase your understanding and knowledge about DLA, who can claim, why to claim, incorporating the recent changes and the support available.

• ‘Helping your child to sleep ’ – This session aims to develop a better knowledge and understanding of the effects and causes of sleep issues and to help increase your confidence to try strategies and seek further support.

• ‘Coping and support ’ – This session explores the issues around stress for parents of disabled children, including how stress impacts on the family and how you can manage stress. The aim is to help to recognise the triggers of stress and look at different ways of dealing with it.

• ‘Helping parents support the brothers and sisters of disabled children ’ – This session explores the issues and concerns parents share about the brothers and sisters of their disabled child. It will reflect on the emotional and practical pressures that brothers and sisters may experience and and explore ways to manage them and strengthen family relationships.

• Parent friendly information and advice drop-in sess ions - ‘One to one friendly advice and information sessions’ for anyone who cares for a child with additional needs, a disability or a medical condition ...we will listen, help and provide information and support relevant to you and your family.

• ‘Impacts on family life: Disability awareness trai ning’ for staff (e.g. children’s centres, colleges, schools, universities, nurseries, health professionals, social services, leisure services) This workshop aims to increase staff confidence by raising awareness, understanding and knowledge around disability and the issues and barriers for families. It will examine ways in which you can improve support to families. The session will include an overview of how we can help and what other sources of support there are for your organisation.

We will try and offer other themed information sessions on request from parent groups or organisations that support parents. Please let us know if there is something specific you would like an information session around and we can discuss further. Please note that all sessions are subject to availability and local needs and we ask that there are a minimum of 8 people attending. To arrange Information sessions for staff or parents; to discuss other training options, other themed sessions, or for more information about Contact a Family North West please contact Karen Robinson, Regional Development Manager NW England. Email: northwest@cafamily.org.uk Telephone: 01706 220578

Free days out at Eureka Eureka! In Halifax are inviting families with disabled children to come and enjoy special tailored activities and support from our trained staff. Activities will be inclusive for both and their siblings to take part in. All activities and car parking are freeclubs receive a free packed lunch (for adults and children), and a free family annual pass which lets them return as many times as they lidisabled children to two assisted visits a year, supported by trained staff.Clubs - 25, 26 July and 1, 2, 8, 9, 15, 16, 22, 23, 29, 30 August. Pre booking is essential for both packageswww.eureka.org.uk/helpinghandsclubtrizia.wells@eureka.org.uk

Aiming Higher in Blackpool have moved... Aiming Higher support families of disabled children to attend social activities by ensuring easy access into buildings, hosting family events at suitable locations &activities. They fund Afterschool Activities that include Bowling and Youth Clubs. fully adapted and accessible six birth 105 Central Drive, Blackpool, where

Regular parent meetings (meet and gmeetings are an opportunity to share information and perhaps find answers to questions. Without doubt having a disabled child brings im

Aiming Higher has recently moved locations. The new move will enable them to have a one stop shop where parents can source valuable information and advice. They are currently in the middle of renovating a new soft play and sensory area forteenaged zone and café for those that would love to pop in for a coffee and chat. Their new address is 231-233 Church Street, Blackpool FY1 3PBPop along and meet the team!

Pop in to our drop in sessions in Blackpool... Contact a Family will also be holding a dropWoodlands School, Whitegate Drive, Blackpool, FY3 9HFFamilies wanting to attend the Together centre drop in can Contact a Family will be holding a dropStreet, Blackpool FY1 3PB. The dropWednesday 11th September 10Wednesday 13th November 10-Aiming higher would like peoplebeing very busy!). Please phone on

For more info contact Corriena We recommend that before attending any activities you contact the service provi

our best to ensure accuracy but cannot be held responsible for any changes made to serv

Whats going on...

ree days out at Eureka ... but they’re going fast!

Eureka! In Halifax are inviting families with disabled children to come and enjoy special tailored activities and support from our trained staff. Activities will be inclusive for both and their siblings to take part in. All activities and car parking are free. All families attending clubs receive a free packed lunch (for adults and children), and a free family annual pass which lets them return as many times as they like in a year. The pass also entitles families with disabled children to two assisted visits a year, supported by trained staff.

25, 26 July and 1, 2, 8, 9, 15, 16, 22, 23, 29, 30 August.

Pre booking is essential for both packages and these dates are already getting booked upwww.eureka.org.uk/helpinghandsclub or call 01422 398474 for more information or email Trizia

Aiming Higher in Blackpool have moved...

support families of disabled children to attend social activities by ensuring easy access into buildings, hosting family events at suitable locations & subsidising the cost of

fund Afterschool Activities that include Bowling and Youth Clubs. six birth caravan in the Lake District and havewhere donations are always welcome.

Regular parent meetings (meet and greet), are held at different locations across the town.meetings are an opportunity to share information and perhaps find answers to questions. Without doubt having a disabled child brings immense pleasure.

Aiming Higher has recently moved locations. The new move will enable them to have a one stop shop where parents can source valuable information and advice. They are currently in the middle of renovating a new soft play and sensory area for the children. There will also be a teenaged zone and café for those that would love to pop in for a coffee and chat. Their new

233 Church Street, Blackpool FY1 3PB and telephone number

Pop in to our drop in sessions in Blackpool...

Contact a Family will also be holding a drop-in at the Together Centre, Rear Woodlands School, Whitegate Drive, Blackpool, FY3 9HF on: Tuesday 8

o attend the Together centre drop in can just turn up

Contact a Family will be holding a drop-in at Aiming Higher Blackpool at The drop-in will be on:

-12 -12

Aiming higher would like people to book with them for a drop in slot (as they anticipate them Please phone on 01253 206448 to book your time slot

on 01772 812294, corriena.tomkinson@cafamily.org.uk

that before attending any activities you contact the service provider to check it is suitable for our best to ensure accuracy but cannot be held responsible for any changes made to services, times or dates advertised

12

Eureka! In Halifax are inviting families with disabled children to come and enjoy special tailored activities and support from our trained staff. Activities will be inclusive for both disabled children

All families attending clubs receive a free packed lunch (for adults and children), and a free family annual pass which

The pass also entitles families with disabled children to two assisted visits a year, supported by trained staff. Summer Holiday

and these dates are already getting booked up! Visit for more information or email Trizia

support families of disabled children to attend social activities by ensuring easy subsidising the cost of

fund Afterschool Activities that include Bowling and Youth Clubs. They own a and have a charity shop on

at different locations across the town. The meetings are an opportunity to share information and perhaps find answers to questions.

Aiming Higher has recently moved locations. The new move will enable them to have a one stop shop where parents can source valuable information and advice. They are currently in the

the children. There will also be a teenaged zone and café for those that would love to pop in for a coffee and chat. Their new

and telephone number 01253 206448

Rear Tuesday 8th October 12.30- 2.30

– no need to book.

at 231-233 Church

to book with them for a drop in slot (as they anticipate them slot .

corriena.tomkinson@cafamily.org.uk

der to check it is suitable for your needs. We do ices, times or dates advertised

13

Who to ask?

Who to ask about what’s going on? There are so many groups, meetings and play schemes going on around the region it would be impossible for us to list all of them. If you come across a new group, a one off event or a change to a group, we are happy to highlight it in our newsletter but if you would like to find out what is going on in your area more regularly, or at specific times like school holidays, for specific conditions, or events, here’s a list you’ll need! Your local Family Information Service (FIS) should know what is going on for families with disabled children in your area. There is no longer a national number and each local area has its own contact number but you can search for your local FIS at www.daycaretrust.org.uk/nafis Support groups can be a great source of information. If you know of a local support group in your area, either for children with disabilities generally or a group set up for the same condition as your child, ask them if they have details of suitable events. Carers centres are there for anyone who is an unpaid carer for another person. This includes adults and children and they often have strong links with parent carer forums. Lots of services advertise their events with carers centres and they frequently hold their own events. Parent advisors, family support workers and SENCOs in school often keep abreast of local events, meetings, groups and play schemes so ask if they know of anything suitable. Your parent carer forums keep up to date with what’s going on in your area and they sometimes put on social and information events themselves. Here are the websites or e-mails for parent forums around the region. If any have changed please let us know! For information about Parent Carer forums across the North West please contact:- Carolyn Deveney – Parent Carer Participation Advisor carolyn.deveney@cafamily.org.uk Telephone 07905 917 066. Carolyn supports parent carer forums across the region. Blackburn with Darwen - annmarie.pickering@blackburn.gov.uk Blackpool Aiming High Parents' Forum - www.blackpoolparentsaiminghigh.org.uk Bolton Area Council for Parents & Carers (BACPAC) - www.bacpacbolton.org.uk Bury Parent Partnership - www.buryparentsforum.org.uk Cheshire East Parents' and Carers' Voice - www.cepcvoice.org Cheshire West and Chester Parent Part. Parent Carer Forum - www.sites.google.com/site/ppsparentsforum Learning To Change Cumbria - www.soul-trade.com/change/forum/ Halton - Powerful Voices 4 Parents n Carers - www3.halton.gov.uk SPEAK - Supporting Parents, Events and Advice in Knowsley - www.speakknowsley.co.uk Lancashire Parent Carers Forum - www3.lancashire.gov.uk/corporate/web/?IDSS/33016 Liverpool, LivPac – livpac@btinternet.com Manchester parent carer network - www.manchesterparentcarernetwork.com Parents of Oldham in Touch (POINT) - www.pointoldham.co.uk The Parents' Forum for Children with Disabilities (Roch, Hey and Middleton) - www.theparentforum.co.uk P.A.C.T.S. (Parents and Carers Team Sefton) - www.pactsefton.org.uk St Helens - Listen 4 Change - www.sthelenscarers.org.uk PIPS (Parents In Partnership Stockport) - www.pipstockport.org Tameside - Our Kids Eyes - www.ourkidseyes.org Trafford Parent Forum jimmy.wagg@trafford.gov.uk; geraldine.english@trafford.gov.uk Warrington parents and carers - www.warringtonparentsandcarers.org Wigan Parent Carers Forum - www.wigan.gov.uk Wirral Family Consultation Forum - www.wirralfamilyforum.org

14

Useful contacts and numbers

Useful contacts and numbers… Contact a Family Contact a Family is the only UK-wide charity providing support, advice and information for families with disabled children, no matter what their condition or disability. We have a freephone helpline staffed by expert parent advisers who can help with any issue to do with your child’s disability and we also have specialist workers in Special Education Needs available. Just call 0808 808 3555 (mon-fri, 9.30- 5.00). We also have a wide range of publications with free parent guides covering issues such as benefits, rights and entitlements and relationships. Contact a Family also produces newsletters, booklets and research reports, helping parents to stay informed. Check out the website for further information at www.cafamily.org.uk Family Fund Family Fund are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. We help ease the additional pressures families face. We can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together. For more information please go to www.familyfund.org.uk email info@familyfund.org.uk or 08449 744 099. Family Information Service (FIS) Your local Family Information Service (FIS) provides a range of information on all services available to parents and carers, to help you support your children 0-19 or 0-24 if your child has a disability. They provide a free, impartial and confidential (unless there are reasons for concerns about a child's safety and/or welfare) service to parents/carers, young people and professionals providing information on: Childcare and options available; Benefits and grants; Parenting support; Family matters; Support for children with additional needs/disability (including short breaks). You can search for your local FIS at www.gov.uk/find-family-information-service and enter your postcode. There is no national number. Motability The Motability Scheme enables disabled people to exchange either their Higher Rate Mobility Component of Disability Living Allowance to obtain a new car, powered wheelchair or scooter. Motability will cover insurance, breakdown, maintenance and provide a new vehicle every 3 years. For more details contact www.motability.co.uk or phone 0845 456 4566. Occupational Therapists (OTs) Occupational therapists aim to enable people to "achieve as much as they can for themselves and get the most out of life’. An occupational therapist can identify problem areas such as dressing, sitting, walking, and will carry out an assessment. By using techniques to improve someone’s ability or by changing the environment or equipment they are using, an occupational therapist allows that person to regain or improve their independence. You can be referred for an assessment by your GP or consultant (specialist doctor); a nurse; another healthcare professional; a social care professional. Parent Carer Forums Parent carer forums are made up of parents of disabled children who aim to provide service providers with the views and concerns of all parent carers to influence the improvement of service development, design and delivery. A parent carer forum is generally made up of a committee or steering group which manages the work of the forum. The forum usually provides parent representatives for strategic decision making committees and/or task groups who are able to represent the views of a wider range of parents. Successful forums are regularly involved in joint work to shape and develop services for disabled children and their families. To find out more about Parent Participation at www.cafamily.org.uk

15

Useful contacts and numbers

Parent Partnership Services (PPS) Parent Partnership Services fulfil the legal requirement to provide information advice and support to parents and carers of children and young people with special educational needs (SEN). PPSs have a role in making sure the views of parents are heard and understood with regard to SEN and that these views inform local policy and practice. The PPS can also signpost parents to other local and national organisations. You can find your local PPS at www.parentpartnership.org.uk/find-your-pps Parent Support Groups Parent support groups are local groups that provide support for families of children with additional needs/disabilities, within a specific town, geographical area or school. They can offer parents the chance to make friends, share experiences and learn about local services. National condition specific groups, support families in the UK who have a child with a specific condition. Some of the larger groups also offer local support (for example the National Autistic Society). They are a good way for parents to find out about their child’s condition or disability, latest treatments and current thinking and are usually linked to expert medical professionals. To find out about local groups contact the local PPS, FIS or Contact a Family’s freephone helpline on: 0808 808 3555 (Mon–Fri). Portage Services The Portage service is a home visiting educational service for pre-school children with additional support needs and their families. Their aim is to support the development of young children’s play, communication and relationships. For more information please see the National Portage Association at www.portage.org.uk. New parents can e-mail parents@portage.org.uk. Speech and Language Therapists (SALT) Speech and language therapy is concerned with the management of disorders of speech, language, communication, feeding and swallowing. Speech and language therapists (SLTs) work closely with parents, carers and other professionals, such as teachers, nurses, occupational therapists and doctors. If you think you, or your child or relative needs to see a speech and language therapist ask your GP, district nurse, health visitor, your child's nursery staff or teacher for a referral. You can also refer yourself to your local speech and language therapy service by ringing your local health authority and ask for the telephone number of your local NHS speech and language therapy service. Special Educational Needs Coordinator (SENCO) The SENCO is the member of staff in school whose job it is to coordinate support for children who have special educational needs (SEN) both inside school, and, if necessary, drawing in expert help from outside the school. It is the SENCO’s duty to keep parents informed about their child’s progress and consulted on decisions that may affect them. They are the point of contact if a parent has any concerns about their child. To find out more go to to www.education.gov.uk and search for SENCO. Sure Start Children’s Centres Sure Start Children’s Centres are a ‘one-stop shop’ for children primarily 0-5 and their families offering: childcare, play and early learning; expert advice, healthcare, parenting and family support; brushing up on your skills and learning new ones; taking qualifications; links to training and job opportunities; family fun and meeting friends. Most services are free but you will usually need to pay for childcare. If you’re on a low income you may be able to get some extra help to cover the costs. You can find your local sure start centre at www.gov.uk/find-sure-start-childrens-centre and enter your post code.

If you notice any of this information as no longer correct or you would like us to add something to it please contact the North West team at northwest@cafamily.org.uk

16

Registration

Not your own copy? Need to update your details?

Fill out our registration form... Thank you to all the parents and professionals who have filled out the new registration form since September 2011! If you are new to Contact a Family or have or have changed your contact details since filling out the form, we need you to fill in our parent or professional registration form. If we have your details we can send you our free newsletters, information about family events and news about all kinds of issues that may affect your family or the families you work with. You can get a form sent by e-mail from our staff at northwest@cafamily.org.uk and send it back to us electronically. If you would like us to send you a registration form or you would like to write to us about something, you can send a letter to us at North West Registration, Contact a Family, 209-211 City Road, London, EC1V 1JN.

Don’t forget to take a look at our… Podcasts, Facebook, YouTube and Twitter discussions by clicking on the links on the website www.cafamily.org.uk You will find lots of information and advice there including:

• Publications and leaflets • News stories • A to Z of medical conditions • Fundraising activities and campaigns • Making Contact (to get in touch with other parents) • Support for professionals

Disclaimer... Every effort is made to ensure the information in this newsletter is correct. Contact a Family can accept no liability for errors and omissions and cannot recommend products or services. Views and opinions expressed are not necessarily those of Contact a Family.

Contact a Family would like to thank the following for their generous support of our work in the North West Region: Kathleen and Ivy Barnett, Children in Need, The Big Lottery Fund, ScottishPower Energy Trust, Irwin Mitchell Solicitors, The Camelia Trust, The Sunflower Foundation, The Elizabeth Rathbone Charitable Trust, The Miss Jo Torrington Children's Fund, Chrimes Family Charitable Trust and the Duchy of Lancaster Benevolent Fund.