Connected ideas 4

connected For families with disabled children and all those who work with them

Summer 2013

Pioneering parents – MAKING IT HAPPEN!

SPECIAL

The Equality Act 2010

Challenging stigma

A sibling’s story

What you need to know about discrimination

What Contact a Family is doing to tackle it

Billie shares her experiences

contents

welcome Sen: 3 Srabani we’re working hard behind the scenes

Contact a Family news and campaigns 3 Policy update: the children and families bill news: 4 Fundraising run for Contact a Family in 2014 work with children’s 5 Our centres in England:

by Rachel Lawrence

6 News from the nations:

Other news in a time of austerity: 10 Living meet Rachael Davies and her family carer participation: 1 1 Parent working in partnership to make a difference and campaign news: 12 Legal for families with disabled children round the UK Groups Network: 13 Local parent support groups that have recently joined

Pioneering parents Good Gifts: 14 Anglesey Maggie Raja on an inclusive arts group and café Hope: 15 New interview with Jean Wilson on an award-winning respite centre Lawson and Free 16 Vikki Cakes for Kids: an interview by Malte matters into her own 17 Taking hands: Liz Jones set up a national support group

7

Benefit news Independence 8 Personal Payment has arrived for young people

club in Wales am I now?: 19 Who Karen Wooddissee delivers training to parents and professionals the stage: 20 Taking Yvonne Newbold on adapting her blog into a stage play local groups: 21 Supporting Rosemary Northing, Ladygrove Children’s Centre

22 Resources: publications and grants day in the life: 23 ASheila Davies, parent

what’s happening around the UK Events for parents and professionals: in England, Scotland and Wales

had a dream: 18 IAlex Elsaesser on setting up a ski

...everything we do will help ensure that families with disabled children feel valued...

participation (health) managert

Jackie Smith, page 21

advice: 9 Benefits thanks to funding from the Big Lottery Fund

connected magazine Edited by: Nathalie de Broglio and Karin Beeler Email: library.team@cafamily.org.uk Layout John Clarkson Note: The views, opinions, and content of Connected and do not necessarily reflect the views, opinions, or policies of Contact a Family. Contact a Family policy statements are always clearly identified. The listing of resources is for information purposes and does not constitute endorsement by Contact a Family. © Contact a Family 2013

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welcome

www.cafamily.org.uk Freephone helpline: 0808 808 3555 Contact a Family 209–211 City Road, London EC1V 1JN 020 7608 8700, Fax: 020 7608 8701 info@cafamily.org.uk Contact a Family Northern Ireland Bridge Community Centre, 50 Railway Street Lisburn BT28 1XP 028 9262 7552 nireland.office@cafamily.org.uk Contact a Family Scotland Craigmillar Social Enterprise & Arts Centre 11/9 Harewood Road, Edinburgh EH16 4NT 0131 659 2930 scotland.office@cafamily.org.uk Contact a Family Cymru 33–35 Cathedral Road, Cardiff CF11 9HB 029 2039 6624, Fax: 029 2039 6625 wales.office@cafamily.org.uk Contact a Family North East England Region The Dene Centre, Castle Farm Road Newcastle upon Tyne NE3 1PH 0191 213 6300 northeast.office@cafamily.org.uk Contact a Family West Midlands Region Prospect Hall, 12 College Walk Selly Oak, Birmingham B29 6LE 0121 415 4624, Fax: 0121 415 4922 westmids.office@cafamily.org.uk Contact a Family Ealing and Southall Lido Centre, 63 Mattock Lane London W13 9LA 020 8280 2267 ealingandsouthall@cafamily.org.uk St. Georges Community Centre 8–12 Lancaster Road, Southall UB1 1NW 020 8571 6381, Fax: 020 8571 6400 southall.office@cafamily.org.uk Contact a Family Lambeth Lambeth Accord, 1st Floor 336 Brixton Road, London SW9 7AA 020 7326 5270 lambeth.office@cafamily.org.uk Contact a Family Lewisham Leemore Central Community Hub Bonfield Road London SE13 5EU 020 8297 8056 lewisham.office@cafamily.org.uk Contact a Family Southwark Cambridge House, 1 Addington Square London SE5 0HF 020 7358 7799 southwark.office@cafamily.org.uk Contact a Family Sutton Hill House, St Hellier Community Association Bishopsford Road, Morden SM4 6BL 020 8640 5525, Fax: 020 8640 7799 sutton.office@cafamily.org.uk Contact a Family Wandsworth 1 Siward Road, London SW17 0LA 020 8947 5260, Fax: 020 8947 9506 wandsworth.office@cafamily.org.uk

Stronger and better together Update from our Chief Executive, Srabani Sen

W

elcome to this edition of ...everything Connected. I want to we do will help personally thank the many parents ensure that who have helped us over the past families with year to form the strategy for Contact a Family that will steer our disabled children work for the next five years. Those feel valued... of you who helped have really shaped what we aim to achieve for the families we support.

I am pleased to announce that we have now finalised our goals, which based on what you told us, gives us clear direction over the next few years.

At the heart of this review has been a detailed process to define the difference we aim to make to your lives, otherwiseknown as ‘outcomes’. Based on what parents told us, we are focusing on those things that you’ve said matter most. Thank you so much for taking the time to tell us what you think. It makes a huge difference to our work.

We are clear that everything we do will help ensure that families with disabled children feel valued, and are strong, confident and able to make the decisions that are right for them. To achieve this, Contact a Family is committing to delivering on four specific outcomes all aimed at making life better for families with disabled children. We aim to ensure that: • families know how to get the right support for them and their families • families are more confident to deal with the challenges they face • the financial disadvantage that families with disabled children face will be alleviated • families feel understood, valued and included as equal participants in their communities and in society.

“

“

As you read this, our staff will be working hard to develop practical plans to deliver on these outcomes, and we’ll tell you more about this as our plans shape up. 290

ummer 2013 | connected

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news

Welsh mother wins twoyear battle for support Tymandra Blewett-Silcock, a mother from Caerphilly in Wales whose daughter has complex needs, has won a two-year battle with social and health services to get the right support.

Tymandra’s daughter requires tube feeding which needs nursing help.

For two years, social services said it’s a health need whilst the local health board said it isn’t strictly a health need.

Speaking before her win, Tymandra said: “We really are caught between the two, effectively arguing about their budgets. It’s a continual struggle and a fight, and the strain! There’s enough strain on a family anyway, but the strain of having to fight your case with people who have just got their blinkers on.”

Richard Jones, Contact a Family Cymru manager, said: “The struggle

that this family faces on a daily basis truly highlights the need for health and social services to work together in the best interests of children and families.

Unfortunately, all too often in Wales this is not the case. Contact a Family Cymru will continue to press the Welsh government and local councils to work together and put families at the centre of their care plan.”

“Battling for services is a problem for families with disabled children across the UK, parent carers like Tymandra need a system of support that is joined up, working in partnership with the family wherever they live. Contact a Family’s UK-wide advice services help parent carers navigate the system, giving them the know how and confidence to get the right services for them and their family,” added Srabani

Photo captions to go on nice seethrough boxed Sen, CEO at Contact a Family.

Speaking after her win, Tymandra said: “It’ll just mean a much easier life, and a better quality of life for Poppy as well. With just more help, getting her off to school, bath her, maybe swim more, it’s just really, really good news.”

Call our freephone helpline on 0808 888 3555 with questions 328

Care in the future

The Hardest Hit 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 exposes just how many cuts to disabled people’s support have happened or are in the pipeline.

Bust the myths at http:// disabilitybenefitsconsortium. wordpress.com 51

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The care bill for England was published in May 2013 and is currently being looked at

by Parliament. The care bill is important as it relates to social care law for adults and will provide the framework for adult care and support services in the future. The bill will introduce important new rights for disabled people and recommendations made by the Dilnot commission on long-term care funding.

Although the new bill will introduce a number of new and improved rights for carers, such as making it easier for carers to get an assessment from their local council, these enhanced rights will only apply to adults caring for other adults. This means parent carers of disabled children will miss out, leaving them in a no-man’s land – falling through the gap. 133

news

in brief Tune in to Contact a Family

We are delighted Contact a Family will be featured in the charity appeal slot! Tune in and listen to the appeal and, if you are on Twitter or you’re a Facebook fiend, give our appeal a wee push to your friends and contacts.

Save the date! Sunday 6 October 2013 at 7.55am and 9.26pm.

Listen again www.bbc.co.uk/ radio4

Camera competition winner!

We’re delighted to announce the prize draw winner of the FUJI Film camera, very kindly donated by our printers, RAP Spiderweb Ltd, for completing our survey about Connected. Congratulations Kenneth Robbins! Kenneth cares for Kamron, aged seven. And thank you to everyone for your invaluable feedback.

New EDCM Campaign Manager for England

We are pleased to announce that Beatrice Barleon has joined us as the new EDCM campaign manager from Mencap.

Beatrice started working with EDCM June 2013 and brings with her a wealth of experience of social and welfare policy as well as a background in local community activism. 168

www.cafamily.org.uk

David Bone and Bridgget Colloby

The marvellous things you do to raise money If you’ve got the running bug and are interested in taking part in next year’s Virgin London Marathon, why not run for Contact a Family? Last year, our 12 amazing runners raised over £20,000 for Contact a Family.

This has made a big difference in continuing our work supporting families with disabled children.

If you’d like to take part in the London Marathon in April 2014 and raise vital funds for families with disabled children, we have guaranteed places and have already signed up our first runners. Get in touch now with the fundraising team and guarantee your place on the starting line.

We have a great team of cheerers and volunteers – runners’ friends and family, and Contact a Family staff. Everyone has a fantastic day enjoying the unique London Marathon atmosphere and cheering on our runners.

And if you need any extra inspiration, Physiotherapist Sam Close from Essex has run six half marathons already and ran for us in 2013. “I decided to run the London arathon two years ago. I was drawn in by the buzz and atmosphere of watching runners of different ages and abilities all pushing themselves to raise money for a charity close to their hearts and also to fulfil their own personal challenges.

“As a physiotherapist, I often work with people who have a range of

disabilities but I couldn’t decide which charity to run my first ever marathon for. I was chatting to a friend about my dilemma and they told me about all the great things Contact a Family has to offer families with disabled children.

After doing a little bit more research I decided that Contact a Family was definitely the charity for me.

“I’m so glad I made that decision to run for Contact a Family and would recommend fundraising for them to everyone. The support that I’ve had from the charity’s fundraising team has been second to none. Everyone I have spoken to at Contact a Family has been friendly and welcoming. Any questions I’ve had have been answered quickly making the whole experience Contact our fundraising team: fundraising@cafamily.org.uk 020 7608 8731 355

Thank you!

For all the cakes baked, the hair cut, the miles run, the fancy dressed and the buckets filled with coins and love

ummer 2013 | connected

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news

NEWS From the

nations Northern Ireland

David Bone and Bridgget Colloby

One colunm picture story We are delighted Contact a Family will be featured in the charity appeal slot! Tune in and listen to the appeal and, if you are on Twitter or you’re a Facebook fiend, give our appeal a wee push to your friends and contacts.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

Three parent surveys are being carried out during the project, which will run until April 2014.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

Sunday 6 October 2013 at 7.55am and 9.26pm. Listen again www.bbc.co.uk/radio4 180

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Launch of Northern Ireland Assembly Community Connect The Northern Ireland (NI) Assembly has recently launched Assembly Community Connect (ACC), a new initiative to allow the community and voluntary sector and Members of the Legislative Assembly to network more efficiently, to share knowledge and experience in order to develop a greater understanding of the processes, structures and work of the Assembly.

The project aims to promote greater involvement between politicians and the community and voluntary sector.

Also in Northern Ireland: ■■ the Department of Health, Social Services & Public Safety (DHSSPS) are testing a children with disabilities and complex needs training project to overcome the barriers to childcare for parents with disabled children ■■ the SEN bill and the new Code of Practice are expected to go through the NI Assembly in September 2013 ■■ NI welfare reform bill is awaiting the consideration stage.

england New manager for our Wales office Richard Jones has joined Contact a Family Cymru as the new manager.

Richard follows in the footsteps of former manager Keith Bowen, who moved to a new role with Carers Wales.

Richard, whose background is across the Third Sector in Wales, is passionate about working with and for families with disabled children: “I have worked in management roles for a number of charities in Wales, including the Red Cross, Action on Hearing Loss, the Ramblers and the National Childminding Association, but this is a great opportunity to support a cause that means much to me.”

Cymru

New manager for our Wales office Richard Jones has joined Contact a Family Cymru as the new manager.

Richard follows in the footsteps of former manager Keith Bowen, who moved to a new role with Carers Wales.

Richard’s start with Contact a Family coincides with the implementation of a new strategy for the organisation, one that is determined to make the biggest difference possible to the lives of families with disabled children. Richard explained that the strategy is ,“built on a realistic vision where families with disabled children feel valued, and are strong, confident and able to make decisions that are right for them.”

Scotland Contact a Family Scotland is a committed member of for Scotland’s Disabled Children (fSDC) – a coalition of over fifty disability and children’s organisations which continues to influence policy in Scotland through a number of areas of work.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

Three parent surveys are being carried out during the project, which will run until April 2014. The first survey is completed and a report will be available soon.

For further information visit www.fsdc.org.uk or phone our Edinburgh office on 0131 659 2930, or email Marion Macleod at Children in Scotland mmacleod@ childreninscotland.org. uk 480

news

Working in partnership and making a difference An update on parent particpation in England It continues to be a busy time for Parent Carer Participation across England.

Over the last few months, parent carer forums have completed their Department for Education (DfE) grant monitoring and evaluation forms – and many have applied for the next round of DfE funding that will support them in their work during 2013 to 2014.

The activity of parent carer forums is diverse and varies according to the needs of children and families living locally. Parent carer forums regularly hold conferences, information days, drop-in sessions, and open meetings that encourage parent carers to find out more and, hopefully, get involved. All of these events could be happening locally to you!

The National Network of Parent Carer Forums The National Network of Parent Carer forums (NNPCF) continues to represent parent carer forums nationally and has been busy feeding into the ongoing work around the Special Educational Needs and Disability (SEND) reforms in relation to the children and families bill – in particular, supporting the ongoing consultation around the SEN Code of Practice.

The NNPCF also continues to work in close partnership with Contact a Family to ensure that good practice, knowledge, and shared expertise about parent participation continues to grow and strengthen.

Our successful national parent participation event...

On March 18, a National Parent Carer Participation event was held at Birmingham NEC, organised and hosted in partnership, with the National Network of Parent Carer Forums and Contact a Family.

Parent carer forums from across England joined together for the opportunity to discuss, learn and www.cafamily.org.uk

Birmingham event Feedback An absolute privilege to be here amongst all this focus, compassion, understanding and strength.

Great chance to feel that we made a difference to how NNPCF work. Brilliant to be able to network with other forums.

It has shown other people that young people have a voice and can inspire others.

network with areas involved in the government’s Special Educational Needs and Disability (SEND) Pathfinder programme. We heard updates from the Department for Education and Department of Health on the children and families bill, and also found out more about what is happening with the participation of disabled children and young people.

David Bone

Key-note speakers at the event included representatives from the Department for Education and Department of Health, and Sheila Davies from Contact a Family, who spoke about parent carer participation in Health and how forums can work with clinical commissioning groups. There was also a particularly inspiring presentation from Richard Jackman who spoke about his involvement in the young people’s advisory group EPiC – www. councilfordisabledchildren.org.uk/epic The event was a great opportunity for the National Network of Parent Carer Forums to present their progress report and give an account of their wide range of activities, achievements and partnerships established over the past two years – see www.nnpcf.org.uk/ resources. This was delivered alongside the update from Contact a Family on the national picture of ‘Strengthening Parent Carer Participation’ and Contact a Family’s ongoing activity as one of the Department for Education SEND delivery partners.

It was a lively and inspiring event that consolidated the hard work that parent carer forums, the NNPCF and Contact a Family have been doing over the last year to ensure that parent

To see videos and documents from our event at Birmingham NEC, take a look at the following links: www.cafamily.org.uk/pcpresources www.nnpcf.org.uk/news-and-consultations 542 If you are a parent carer and would like to get involved or in touch with your local parent carer forum or to find out more about what a parent carer forum is visit www.cafamily.org.uk/what-we-do/parent-carer-participation/

ummer 2013 | connected

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news

Working in partnership and making a difference An update on parent particpation in England It continues to be a busy time for Parent Carer Participation across England. Over the last few months, parent carer forums have completed their Department for Education (DfE) grant monitoring and evaluation forms – and many have applied for the next round of DfE funding that will support them in their work during 2013 to 2014.

The activity of parent carer forums is diverse and varies according to the needs of children and families living locally. Parent carer forums regularly hold conferences, information days, drop-in sessions, and open meetings that encourage parent carers to find out more and, hopefully, get involved. All of these events could be happening locally to you!

The National Network of Parent Carer Forums The National Network of Parent Carer forums (NNPCF) continues to represent parent carer forums nationally and has been busy feeding into the ongoing work around the Special Educational Needs and Disability (SEND) reforms in relation to the children and families bill – in particular, supporting the ongoing consultation around the SEN Code of Practice.

The NNPCF also continues to work in close partnership with Contact a Family to ensure that good practice, knowledge, and shared expertise about parent participation continues to grow and strengthen.

Our successful national parent participation event...

opportunity to discuss, learn and network with areas involved in the government’s Special Educational Needs and Disability (SEND) Pathfinder programme. We heard updates from the Department for Education and Department of Health on the children and families bill, and also found out more about what is happening with the participation of disabled children and young people.

On March 18, a National Parent Carer Participation event was held at Birmingham NEC, organised and hosted in partnership, with the National Network of Parent Carer Forums and Contact a Family.

Parent carer forums from across England joined together for the opportunity to discuss, learn and network with areas involved in the government’s Special Educational Needs and Disability (SEND) Pathfinder programme. We heard updates from the Department for Education and Department of Health on the children and families bill, and also found out more about what is happening with the participation of disabled children and young people.

Our successful national parent participation event...

On March 18, a National Parent Carer Participation event was held at Birmingham NEC, organised and hosted in partnership, with the National Network of Parent Carer Forums and Contact a Family.

Parent carer forums from across England joined together for the

Birmingham event Feedback An absolute privilege to be here amongst all this focus, compassion, understanding and strength.

Great chance to feel that we made a difference to how NNPCF work.

Brilliant to be able to network with other forums.

It has shown other people that young people have a voice and can inspire others.

If you are a parent carer and would like to get involved or in touch with your local parent carer forum or to find out more about what a parent carer forum is visit www.cafamily.org.uk/what-we-do/parent-carer-participation/ 8

connected | ummer 2013

news

Working in partnership with the National Network of Parent Carer Forums

Policy & campaigns update Una Summerson, our Head of Policy and Public Affairs, on planned changes to special educational needs in England

Key-note speakers at the event included representatives from the Department for Education and Department of Health, and Sheila Davies from Contact a Family, who spoke about parent carer participation in Health and how forums can work with clinical commissioning groups. There was also a particularly inspiring presentation from Richard Jackman who spoke about his involvement in the young people’s advisory group EPiC – www. councilfordisabledchildren.org.uk/epic The event was a great opportunity for the National Network of Parent Carer Forums to present their progress report and give an account of their wide range of activities, achievements and partnerships established over the past two years – see www. nnpcf.org.uk/resources. This was delivered alongside the update from Contact a Family on the national picture of ‘Strengthening Parent Carer Participation’ and Contact a Family’s ongoing activity as one of the Department for Education SEND delivery partners.

It was a lively and inspiring event that consolidated the hard work that parent carer forums, the NNPCF and Contact a Family have been doing over the last year to ensure that parent participation and co-production remains high on local, regional and national agendas.

To see videos and documents from our event at Birmingham NEC, take a look at the following links: www.cafamily.org.uk/pcpresources www.nnpcf.org.uk/news-andconsultations 644

The publication of draft legislation on the reform of provision for children and young people with special educational needs (SEN) in England happened in September 2012. It marked the start of changes to the SEN legal framework for families living in England.

Changes to the SEN system in Wales are also being proposed. The aim is to make the government’s vision set out in the SEN and disability green paper – Support and Aspiration – a reality.

Cross-party MPs sitting on the Education Select Committee put out a request for evidence to find out if parents, local authorities and charities such as Contact a Family think that the ‘draft provisions’ will really improve the current SEN system and join up services in education, health and care for families. This process is called the pre-legislative scrutiny.

Different parts of the SEN green paper, such as the Education, Health and Care (EHC) assessment and plan, are currently being tested

Select committeE Contact a Family made the following points to the Education Select Committee to ensure the Children and Families Bill can fulfill the government’s ambition to strengthen and promote parental rights, choice and control. We put forward some important considerations:

We said... parents must be able to trigger an Education, Health and Care assessment.

We said... there must be

www.cafamily.org.uk

with a small number of families in 31 ‘pathfinder’ local authorities.

The learning from these pilots will help both the Education Select Committee, the Department for Education and MPs decide what goes into the Children and Families Bill. Contact a Family Wales surveyed support groups and professionals who overwhelmingly said, “Yes!” It is important that families know that this is the start of the legal process and the current special educational needs (SEN) legal framework continues, including in the pathfinder areas.

This means that all local authorities keep their legal duties to identify and assess children’s special educational needs and, where necessary, arrange education provision through a statement of special educational needs.

Call Contact a Family’s SEN National Advice Service for free, impartial advice on 0808 808 3555. 300

parity for carers whether looking after a disabled child or adult, and they must be put on the same footing as the people they care for as set out in the draft Care and Support Bill.

We said... the bill must enable meaningful parent involvement. Ideally, this would be through local parent carer forums in the coproduction, strategic planning, and improvement of local services and the development of the local offer. ■ 120 ummer 2013 | connected

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news

Working in partnership and making a difference An update on parent particpation in England It continues to be a busy time for Parent Carer Participation across England. Over the last few months, parent carer forums have completed their Department for Education (DfE) grant monitoring and evaluation forms – and many have applied for the next round of DfE funding that will support them in their work during 2013 to 2014.

The activity of parent carer forums is diverse and varies according to the needs of children and families living locally. Parent carer forums regularly hold conferences, information days, drop-in sessions, and open meetings that encourage parent carers to find out more and, hopefully, get involved.

All of these events could be happening locally to you!

The National Network of Parent Carer Forums The National Network of Parent Carer forums (NNPCF) continues to represent parent carer forums nationally and has

Policy & campaigns update Una Summerson, our Head of Policy and Public Affairs, on planned changes to special educational needs in England

10

connected | ummer 2013

been busy feeding into the ongoing work around the Special Educational Needs and Disability (SEND) reforms in relation to the children and families bill – in particular, supporting the ongoing consultation around the SEN Code of Practice.

The NNPCF also continues to work in close partnership with Contact a Family to ensure that good practice, knowledge, and shared expertise about parent participation continues to grow and strengthen.

The publication of draft legislation on the reform of provision for children and young people with special educational needs (SEN) in England happened in September 2012. It marked the start of changes to the SEN legal framework for families living in England.

Changes to the SEN system in Wales are also being proposed. The aim is to make the government’s vision set out in the SEN and disability green paper – Support and Aspiration – a reality.

Cross-party MPs sitting on the Education Select Committee put out a request for evidence to find out if parents, local authorities and charities such as Contact a Family think that the ‘draft provisions’ will really improve

Our successful national parent participation event...

On March 18, a National Parent Carer Participation event was held at Birmingham NEC, organised and hosted in partnership, with the National Network of Parent Carer Forums and Contact a Family.

Parent carer forums from across England joined together for the opportunity to discuss, learn and network with areas involved in the government’s Special Educational Needs and Disability (SEND) Pathfinder programme. We heard updates from the Department for Education and Department of Health on the children and families bill, and also found out more about what is happening with the participation of disabled children and young people.

Key-note speakers at the event included representatives from the Department for Education and Department of Health, and Sheila Davies from Contact a Family, who

the current SEN system and join up services in education, health and care for families. This process is called the pre-legislative scrutiny.

Different parts of the SEN green paper, such as the Education, Health and Care (EHC) assessment and plan, are currently being tested with a small number of families in 31 ‘pathfinder’ local authorities. The learning from these pilots will help both the Education Select Committee, the Department for Education and MPs decide what goes into the Children and Families Bill. Contact a Family Wales surveyed support groups and professionals who overwhelmingly said, “Yes!”

news

Birmingham event Feedback An absolute privilege to be here amongst all this focus, compassion, understanding and strength.

Great chance to feel that we made a difference to how NNPCF work. Brilliant to be able to network with other forums.

It has shown other people that young people have a voice and can inspire others.

Working in partnership with the National Network of Parent Carer Forums

spoke about parent carer participation in Health and how forums can work with clinical commissioning groups. There was also a particularly inspiring presentation from Richard Jackman who spoke about his involvement in the young people’s advisory group EPiC – www. councilfordisabledchildren.org.uk/epic The event was a great opportunity for the National Network of Parent Carer Forums to present their progress report and give an account of their wide range of activities, achievements and partnerships established over the past two years – see www. nnpcf.org.uk/resources. This was delivered alongside the update from Contact a Family on the national picture of ‘Strengthening Parent

Carer Participation’ and Contact a Family’s ongoing activity as one of the Department for Education SEND delivery partners.

It was a lively and inspiring event that consolidated the hard work that parent carer forums, the NNPCF and Contact a Family have been doing over the last year to ensure that parent participation and co-production remains high on local, regional and national agendas. 542 To see videos and documents from our event at Birmingham NEC, visit www.cafamily.org.uk/ pcpresources www.nnpcf.org.uk/news-andconsultations

If you are a parent carer and would like to get involved or in touch with your local parent carer forum or to find out more about what a parent carer forum is visit www.cafamily.org.uk/what-we-do/parent-carer-participation/

It is important that families know that this is the start of the legal process and the current special educational needs (SEN) legal framework continues, including in the pathfinder areas.

This means that all local authorities keep their legal duties to identify and assess children’s special educational needs and, where necessary, arrange education provision through a statement of special educational needs.

Want to know more about the new proposals? Call Contact a Family’s SEN National Advice Service for free, impartial advice on 0808 808 3555. 332

www.cafamily.org.uk

Select committeE Contact a Family made the following points to the Education Select Committee to ensure the Children and Families Bill can fulfill the government’s ambition to strengthen and promote parental rights, choice and control. We put forward some important considerations:

We said... parents must be able to trigger an Education, Health and Care assessment.

We said... there must be parity

for carers whether looking after a disabled child or adult, and they must be put on the same footing as the people they care for as set out in the draft Care and Support Bill.

We said... the bill must enable meaningful parent involvement.

Ideally, this would be through local parent carer forums in the coproduction, strategic planning, and improvement of local services and the development of the local offer.

■ 120

ummer 2013 | connected

11

news

Living in a time of austerity What happens to the people behind the headlines? Meet Rachael Davies and her family...

Hello, can you tell us a bit about you and your family?

I’m Rachael Davies from Cleator Moor in Cumbria. I’m 44 years old and have four children: Scott (22), Hannah (20), Skye (15) and Saskia (14). I have two grandchildren, Harvey-Jay (four) and Tulisa, (two). I’ll have another two grandchildren before this year is out.

I’ve been married twice but I don’t really like wedding cake!

Only Skye and Saskia still live at home and Saskia has a neuromigrational disorder called polymicrogyria, which causes Worcester Draught syndrome, severe epilepsy and mild cerebral palsy.

Recently, they found a duplication on one of her chromosomes called 1q21.1 which causes ADHD, Autism and learning difficulties. Saskia goes to a special school and is learning Makaton sign language.

Apart from caring for Saskia, what do you do?

I do a lot of voluntary work and am chair of governors at the local school.

Currently, I’m concentrating on getting a degree in health and social care but trying to study is an absolute nightmare.

I’ve had to get a loan for part-time study as, if I did it full time, I would lose all my 12

connected | ummer 2013

and cherish every minute.

I feel under constant pressure to look like I know what I’m doing benefits. Why can’t the government help us instead of putting us down? I’m a fulltime carer so I have to live off benefits, but Carers Allowance is taxed and I make sure that I put back into society what I have taken out. But I’m still made to feel like a scrounger.

And you’re single?

Yes, I’ve tried to date over the past 13 years, but feel that I have a totally different perspective on life now that many people can’t grasp. Some people may think that Saskia has ruined my life – but she’s enhanced it. I feel honoured to have cared for her. I haven’t missed out on anything.

Yes, it is exhausting. Yes, she is the forefront of my mind most of the times and, yes, sometimes I may feel that I’m missing out on concerts or holidays etcetera, but then I’ve realised that I now never take life for granted. I value everything and everyone. So when I get out to a concert or go on holiday, I love

What’s on your mind at the moment?

Saskia is high maintenance and ADHD and autism together creates a child who is ‘dynamite’ – no one and nothing is safe so she has a safe-space bedroom, meaning that she cannot share with her sister. Her furniture is now in the other ‘spare’ room along with her wheel chair and her pads.

I helped Contact a Family’s campaign against the ludicrous bedroom tax earlier in the year. I thought we’d won, but no, you still have to fight your own local authority.

I had to prove that Saskia could not share.

What have you learned from life, so far?

Keep fighting, but do it calmly and work with people rather than against them. I do this through parent forums because if there are more of us then professionals will listen. Above all, I try to keep my cool, keep my sense of humour and just try to live for now.

Read more about how the cuts affect Rachael Davies and her family in the next issue of Connected. 542

news

NEWS From the

nations Northern Ireland

Launch of Northern Ireland Assembly Community Connect The Northern Ireland (NI) Assembly has recently launched Assembly Community Connect (ACC), a new initiative to allow the community and voluntary sector and Members of the Legislative Assembly to network more efficiently, to share knowledge and experience in order to develop a greater understanding of the processes, structures and work of the Assembly.

The project aims to promote greater involvement between politicians and the community and voluntary sector.

Also in Northern Ireland: ■■ the Department of Health, Social Services & Public Safety (DHSSPS) are testing a children with disabilities and complex needs training project to overcome the barriers to childcare for parents with disabled children ■■ the SEN bill and the new Code of Practice are expected to go through the NI Assembly in September 2013 ■■ NI welfare reform bill is awaiting the consideration stage.

england New manager for our Wales office Richard Jones has joined Contact a Family Cymru as the new manager.

Richard follows in the footsteps of former manager Keith Bowen, who moved to a new role with Carers Wales.

Richard, whose background is across the Third Sector in Wales, is passionate about working with and for families with disabled children: “I have worked in management roles for a number of charities in Wales, including the Red Cross, Action on Hearing Loss, the Ramblers and the National Childminding Association, but this is a great opportunity to support a cause that means much to me.” www.cafamily.org.uk

Richard’s start with Contact a Family coincides with the implementation of a new strategy for the organisation, one that is determined to make the biggest difference possible to the lives of families with disabled children. Richard explained that the strategy is ,“built on a realistic vision where families with disabled children feel valued, and are strong, confident and able to make decisions that are right for them.”

Cymru New manager for our Wales office Richard Jones has joined Contact a Family Cymru as the new manager.

Richard follows in the footsteps of former manager Keith Bowen, who moved to a new role with Carers Wales.

Richard, whose background is across the Third Sector in Wales, is passionate about working with and for families with disabled children: “I have worked in management roles for a number of charities in Wales, including the Red Cross, Action on Hearing Loss, the Ramblers and the National Childminding Association, but this is a great opportunity to support a cause that means much to me.”

Richard’s start with Contact a Family coincides with the implementation of a new strategy for the organisation, one that is determined to make the biggest difference possible to the lives of families with disabled children. Richard explained that the strategy is ,“built on a realistic vision where families with disabled children feel valued, and are strong, confident and able to make decisions that are right for them.”

For further information visit www.fsdc.org.uk or phone our Edinburgh office on 0131 659 2930, or email Marion Macleod at Children in Scotland mmacleod@ childreninscotland.org.uk

Scotland Contact a Family Scotland is a committed member of for Scotland’s Disabled Children (fSDC) – a coalition of over fifty disability and children’s organisations which continues to influence policy in Scotland through a number of areas of work.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

Three parent surveys are being carried out during the project, which will run until April 2014. The first survey is completed and a report will be available soon. Some of the main findings show that many parents are not aware of important service and policy developments that will affect them and their children.

For further information visit www.fsdc.org.uk or phone our Edinburgh office on 0131 659 2930, or email Marion Macleod at Children in Scotland mmacleod@ childreninscotland.org.uk

Also in Scotland: ■■ the Department of Health, Social Services & Public Safety (DHSSPS) are testing a children with disabilities and complex needs training project to overcome the barriers to childcare ■■ the SEN bill and the new Code of Practice are expected to go through the NI Assembly in September 2013 ■■ NI welfare reform bill is awaiting the consideration stage. 770 ummer 2013 | connected

13

news

Has your family accessed your local children’s centre?

Rachel Lawrence on our work with children’s centres in England and how we’re doing something wonderful – 18word subheads

14

connected | ummer 2013

Contact a Family is working closely with children’s centres across England to improve access for families and their children with additional needs. We provide advice and information, attend events, deliver workshops to staff and parents, and link in local parent forums and specialist organisations.

For parents, the workshops are a great chance to catch up, share ideas and strategies, and the stresses and joys of what is a very demanding job – being a parent and carer to their children.

Our workshops are a valuable chance to make new friends, refresh knowledge and understand that many difficulties are also tackled by countless other families every day. Receiving peer support and knowing you are not alone can be very empowering for parents.

Julie, the London and south east regional children’s centre advisor says, “Working with professionals is fulfilling because it is obvious that they sincerely want to provide the best support they can to families, but sometimes they just need to know what is available.

“Building up professionals’ knowledge of charities and parent-led support groups enables professionals to think more broadly about the assistance on offer, and create services based on what parents have shown that they need.”

Feedback from our workshops makes it clear that many families still face issues surrounding stigma which can lead to isolation. So we’re producing anti-stigma displays to exhibit in children’s centres.

Contributions from families about their experiences of having a child with additional needs serve as a poignant reminder of the adversities they face.

Through sharing artistic and written contributions, we hope to help people empathise with these difficulties. It is vital young people feel included.

Regardless of ability, they share many of the same needs.

For the web savvy amongst you, we will be producing podcasts for our website with top tips aimed at parents who have not had the opportunity to attend our workshops. Fiona Hall, who

works at Mulberry Children’s Centre, Weymouth, received plenty of positive feedback after our workshops. Fiona told us, “For the parents, one of the most helpful aspects of the sessions was being able to share their stories with other sympathetic parents who were able to tell them what had and hadn’t worked for them.

“The packs that were given out meant people could read the materials in their own time, so they weren’t too overloaded with information.

“We were also able to clarify that our support is available to children beyond the age of five and this was a huge relief to their families. Linking families back into our children’s centres for workshops showed them just how much we can do to help them.”

Justin Forden attended two workshops and found they were a great opportunity to brush up on his own

knowledge and get some new tips.

Justin said, “My son is six and has an ASD diagnosis. He really struggles to concentrate. He is easily distracted at mealtimes and it was almost impossible to get him to focus on sharing a meal with the family.

“He copes better with visual aids and the advice I was given at the workshop – to focus on an egg timer – helped my son to sit and eat at the dinner table with the rest of the family for the first time.

“It has helped alleviate the stress between him and his siblings and I no longer feel like I have to fight that daily battle. He is participating more fully in an important part of our family life.”

Your child first needs to complete a basic claim form, which is normally done over the telephone

Find out more about our work in children’s centres at www.cafamily.org.uk/childrenscentre 590

Events for parents and professionals in England, Scotland and Wales Contact a Family England We offer free sessions for groups of parent carers in England on: • stress management • behaviour that challenges • benefits – including Disability Living Allowance • helping your child to sleep • Contact a Family – support families with disabled children.

We offer free sessions for groups of professionals in England, on the barriers families with disabled children face, tips to help you support them, and Contact a Family’s information, advice and support services.

For more information, send us an email: admin@cafamily.org.uk

www.cafamily.org.uk

Contact a Family Scotland Contact a Family has been awarded a two-year grant from the Scotland Government’s Third Sector Early Intervention Fund distributed by the BIG Fund. We will to continue to develop our work with families, including a workshop programme and support to local groups across Scotland.

Call 0131 659 2930 or email scotland. office@cafamily.org.uk to find out more.

Contact a Family Wales Thanks to Big Lottery Funding, Contact a Family Wales are offering a programme of events – including workshops on building confidence and benefits, family-friendly film days and creative workshops.

For information on events in Wales, please contact our Wales office on 02920 396624 or email wales.office@ cafamily.org.uk

ummer 2013 | connected

15

news

Has your family accessed your local children’s centre?

Rachel Lawrence on our work with children’s centres in England

NEWS From the

nations

16

connected | ummer 2013

Contact a Family is working closely with children’s centres across England to improve access for families and their children with additional needs. We provide advice and information, attend events, deliver workshops to staff and parents, and link in local parent forums and specialist organisations.

For parents, the workshops are a great chance to catch up, share ideas

Northern Ireland Launch of Northern Ireland Assembly Community Connect The Northern Ireland (NI) Assembly has recently launched Assembly Community Connect (ACC), a new initiative to allow the community and voluntary sector and Members of the Legislative Assembly to network more efficiently, to share knowledge and experience in order to develop a greater understanding of the processes, structures and work of the Assembly.

The project aims to promote greater involvement between politicians and the community and voluntary sector.

Also in Northern Ireland: • the Department of Health, Social Services & Public Safety (DHSSPS) are testing a children with disabilities

and strategies, and the stresses and joys of what is a very demanding job – being a parent and carer to their children.

Our workshops are a valuable chance to make new friends, refresh knowledge and understand that many difficulties are also tackled by countless other families every day. Receiving peer support and knowing you are not alone

and complex needs training project to overcome the barriers to childcare for parents with disabled children • the SEN bill and the new Code of Practice are expected to go through the NI Assembly in September 2013 • NI welfare reform bill is awaiting the consideration stage.

Contact a Family Cymru New manager for our Wales office Richard Jones has joined Contact a Family Cymru as the new manager.

Richard follows in the footsteps of former manager Keith Bowen, who moved to a new role with Carers Wales.

Richard, whose background is across the Third Sector in Wales, is passionate

news

can be very empowering for parents.

Julie, the London and south east regional children’s centre advisor says, “Working with professionals is fulfilling because it is obvious that they sincerely want to provide the best support they can to families, but sometimes they just need to know what is available.

Crosshead to break text up “Building up professionals’ knowledge of charities and parent-led support groups enables professionals to think more broadly about the assistance on offer, and create services based on what parents have shown that they need.”

Feedback from our workshops makes it clear that many families still face issues surrounding stigma which can lead to isolation. So we’re producing anti-stigma displays to exhibit in children’s centres.

Contributions from families about their experiences of having a child with additional needs serve as a poignant reminder of the adversities they face.

Through sharing artistic and written contributions, we hope to help people empathise with these difficulties. It is vital young people feel included.

Regardless of ability, they share many of the same needs.

For the web savvy amongst you, we will be producing podcasts for our

about working with and for families with disabled children: “I have worked in management roles for a number of charities in Wales, including the Red Cross, Action on Hearing Loss, the Ramblers and the National Childminding Association, but this is a great opportunity to support a cause that means much to me.”

Richard’s start with Contact a Family coincides with the implementation of a new strategy for the organisation, one that is determined to make the biggest difference possible to the lives of families with disabled children.

Richard explained that the strategy is ,“built on a realistic vision where families with disabled children feel valued, and are strong, confident and

www.cafamily.org.uk

website with top tips aimed at parents who have not had the opportunity to attend our workshops. Fiona Hall, who works at Mulberry Children’s Centre, Weymouth, received plenty of positive feedback after our workshops. Fiona told us, “For the parents, one of the most helpful aspects of the sessions was being able to share their stories with other sympathetic parents who

Your child first needs to complete a basic claim form, which is normally done over the telephone were able to tell them what had and hadn’t worked for them.

“The packs that were given out meant people could read the materials in their own time, so they weren’t too overloaded with information.

“We were also able to clarify that

our support is available to children beyond the age of five and this was a huge relief to their families. Linking families back into our children’s centres for workshops showed them just how much we can do to help them.”

Crosshead to break text up Justin Forden attended two workshops and found they were a great opportunity to brush up on his own knowledge and get some new tips.

Justin said, “My son is six and has an ASD diagnosis. He really struggles to concentrate. He is easily distracted at mealtimes and it was almost impossible to get him to focus on sharing a meal with the family.

“He copes better with visual aids and the advice I was given at the workshop – to focus on an egg timer – helped my son to sit and eat at the dinner table with the rest of the family for the first time.

“It has helped alleviate the stress between him and his siblings and I no longer feel like I have to fight that daily battle. He is participating more fully in an important part of our family life.”

Find out more about our work in children’s centres at www.cafamily.org.uk/childrenscentre 600

able to make decisions that are right for them.”

Contact a Family Scotland Contact a Family Scotland is a committed member of for Scotland’s Disabled Children (fSDC) – a coalition of over fifty disability and children’s organisations which continues to influence policy in Scotland through a number of areas of work.

The fSDC coalition and Children in Scotland are working in partnership on a project funded by the Scottish Government and administered by the Big Fund. The project’s objectives are to improve both the level of participation of, and the extent of influence on policy on, parents of children with disabilities.

Three parent surveys are being carried out during the project, which will run until April 2014. The first survey is completed and a report will be available soon. Some of the main findings show that many parents are not aware of important service and policy developments that will affect them and their children. Experience of accessing support and help is very mixed and often there is little choice about resources. These issues will be explored further in the later surveys.

For further information visit www.fsdc.org.uk or phone our Edinburgh office on 0131 659 2930, or email Marion Macleod at Children in Scotland mmacleod@ childreninscotland.org.uk 500

ummer 2013 | connected

17

news

Has your family accessed your local children’s centre?

Rachel Lawrence on our work with children’s centres in England and how we’re doing something wonderful – 18-word subheads Contact a Family is working closely with children’s centres across England to improve access for families and their children with additional needs. We provide advice and information, attend events, deliver workshops to staff and parents, and link in local parent forums and specialist organisations.

For parents, the workshops are a great chance to catch up, share ideas and strategies, and the stresses and joys of what is a very demanding job – being a parent and carer to their children.

Our workshops are a valuable chance to make new friends, refresh knowledge and understand that many difficulties are also tackled by countless other families every day. Receiving peer support and knowing you are not alone can be very empowering for parents.

Julie, the London and south east regional children’s centre advisor says, “Working with professionals is fulfilling because it is obvious that they sincerely

want to provide the best support they can to families, but sometimes they just need to know what is available.

“Building up professionals’ knowledge of charities and parent-led support groups enables professionals to think more broadly about the assistance on offer, and create services based on what parents have shown that they need.”

Feedback from our workshops makes it clear that many families still face issues surrounding stigma which can lead to isolation. So we’re producing anti-stigma displays to exhibit in children’s centres.

Your child first needs to complete a basic claim form, which is normally done over the telephone

Contributions from families about their experiences of having a child with additional needs serve as a poignant reminder of the adversities they face.

Through sharing artistic and written contributions, we hope to help people empathise with these difficulties. It is vital young people feel included.

Regardless of ability, they share many of the same needs.

For the web savvy amongst you, we will be producing podcasts for our website with top tips aimed at parents who have not had the opportunity to attend our workshops. Fiona Hall, who works at Mulberry Children’s Centre, Weymouth, received plenty of positive feedback after our workshops. Fiona told us, “For the parents, one of the most helpful aspects of the sessions was being able to share their stories with other sympathetic parents who were able to tell them what had and hadn’t worked for them.

“The packs that were given out meant people could read the materials in their own time, so they weren’t too overloaded with information. 390 “We were also able to clarify that our support is available to children beyond the age of five and this was a huge relief to their families. Linking families back into our children’s centres for workshops showed them just how much we can do to help them.”

“He copes better with visual aids and the advice I was given at the workshop – to focus on an egg timer – helped my son to sit and eat at the dinner table with the rest of the family for the

Find out more about our work in children’s centres at www.cafamily.org.uk/childrenscentre 500

18

connected | ummer 2013

network news

Local Groups Network Groups that have recently joined our Network

or disability. Call Contact a Family for more details.

Find out more about joining the Network and promoting your group by emailing adele.m@ cafamily.org.uk

East Sussex Newhaven Autism Support Group Supported by Families for Autism, the group meets once a fortnight. A monthly training course covers topics such as behaviour, sensory issues and psychological characteristics. Both sessions run from 10am to 12pm.

Lancashire Seesaws This group holds meet ups, days out and parties! Coffee mornings are held fortnightly and one Saturday per month. Areas it covers are Blackpool, Wyre and Fylde.

Northants Time4Support Supports parents and carers of special needs children in Northamptonshire and offers advice, support and information, stay and play sessions and carers nights out.

Hull Special Stars Hold play sessions for disabled children and their families on the first and third Sunday of the month.

Nottingham Cypress Groups are setting up in Amber Valley, Bolsover, Chesterfield, Erewash and North East Derbyshire to offer friendly and welcoming sessions for families, carers, personal assistants and others who live or work with children and young people with any additional need www.cafamily.org.uk

Reading Link-up Run by a family support worker from Parents and Children Together at Coley Park Children’s Centre, the group has a monthly meeting and offers trips during the school holidays. There are regular lunch meetings with speakers on relevant topics.

Liverpool Sunrise Club A parent support group in Knowsley with a crèche for pre-school children so parents can have time to chat. During the school holidays they run a play scheme.

Leeds Carers Leeds Provides information and support for carers in Leeds and runs support group for parent carers. The ‘Time for Carers Scheme’ allows carers to apply for up to £250 for a holiday or up to £100 for other types of breaks.

Milton Keynes Carers Milton Keynes Provides general support to all informal carers but specifically to parent carers who can involve themselves in training; social events and other support groups.

Thurrock Parent Peer Support Group Coffee mornings held every other Monday for support at South Ockendon Centre offering parent 2 parent befriending; training for parents and a lending library and works in conjunction with parent partnership services.

South East Southern Hydrocephalus and Spina Bifida Foundation For people living in Dorset, Hampshire and Wiltshire, together with their carers and family. Offers home visits and

coffee mornings, local information and social events and leisure activities for all age groups. Grants are available for items which will not be funded by larger charities or the NHS; for example, a secondary hoist for a mobility vehicle, expenses for hospital stays for people living a long way from hospital. Grants are not limited to those living below a certain income.

Suffolk Parent Support Group, Felixstowe Local parents/carers of children of any age with any form of disability are welcome to attend monthly meetings on a Wednesday morning. The group is run on behalf of the Suffolk Parent Carer Network (SPCN).

Ipswich and District Deaf Children’s Society (IDDCS) Supports deaf children and their families in Ipswich and the surrounding area. Events and outings are organised throughout the year giving families opportunities to meet and for children to get to know each other. They also have a facebook page IDDCS. UK-wide Tourettes Action Living with Tourettes can be difficult.

Visit www.tourettes-action.org.uk/localgroups to see if there is a group in your area. 550

For details of groups listed in connected and others, call our freephone helpline

0808 808 3555 ummer 2013 | connected

19

benefit news

How much is PIP?

PIP is paid at the following weekly rates.

Daily living component: standard rate – £53.00 enhanced rate – £79.15 Mobility component standard rate – £21.00 enhanced rate – £55.25

> > > >

Personal Independence Payment What does it means for young people? Parent adviser Judith Hodson, on the new disability benefit replaicing DLA for adults What is PIP?

Personal Independence Payment (PIP) is a new disability benefit replacing Disability Living Allowance (DLA) for people aged 16 to 64. DLA continues for children aged under 16. Like DLA, PIP has two parts – the mobility component and the daily living component.

When will my child claim PIP?

If your child is 16 or over and makes a new claim for disability benefit after 10 June 2013, they will claim PIP. However, different rules apply if your child has an existing DLA award. If your child becomes 16 on or before 6 October 2013 and their DLA is ending, they will be sent renewal forms to 20

connected | ummer 2013

reclaim DLA, and will transfer to PIP at a later date.

However, if your child is 16 after 6 October they will be invited to claim PIP shortly after their birthday (unless terminally ill). If their DLA is supposed to stop on their sixteenth birthday, special rules will allow these payments to temporarily continue until a decision is made on their PIP claim.

From 7 October 2013, disabled people who already receive DLA will also bereassessed under PIP if their award is up for renewal, or if they report a change in their circumstances, or if they volunteer to claim early (seek advicefirst as many claimants will be worse off under PIP). All other existing DLA claimants will be reassessed

between October 2015 – 2017, including those with an indefinite award.

These dates apply in England, Wales and Scotland. At the time of writing, no date has yet been fixed for PIP’s introduction in Northern Ireland, and will depend on the passage of the Welfare Reform Bill through the Northern Ireland Assembly.

How is PIP assessed?

Your child first needs to complete a basic claim form, which is normally done over the telephone. They will then be sent a paper questionnaire ‘How Your Disability Affects You’ to complete. In most cases, your child will also be asked to attend a faceto-face assessment with a health care professional appointed by the Department for Work and Pensions (DWP). You, or someone else, can accompany your child to the assessment and you can also submit extra evidenceat any time.

How does may child qualify for PIP?

Entitlement to PIP depends on how your child’s condition affects their ability to carry out certain activities necessary for independent living.

Points are awarded for each activity your child is assessed as having difficulty with, the amount varying

benefit news

Your child first needs to complete a basic claim form, which is normally done over the telephone

PIP criteria – the activities that are assessed Daily living component:

1 Preparing food 2 Taking nutrition 3 Managing therapy or

monitoring a health condition

4 Washing and bathing 5 Managing toilet needs or

depending on the level of difficulty.

Their total score from activities 1 to 10 decides whether they get the daily living component and at what rate.

Their combined score from activities 11 and 12 are added together to decide whether they get the mobility component and at what rate.

For each component, if you score 8 – 11 points, you will qualify for the standard rate, 12 points or more will lead to the enhanced rate. If you score less than 8 points, you will be refused that component of PIP.

For more about PIP, including the scoring system, see our new guide Personal independence Payment and other benefits at 16 – available free from our freephone helpline on 0808 808 3555. 600

incontinence

6 Dressing and undressing 7 Communicating verbally 8 Reading and understanding signs, symbols and words

9 Engaging with other people face to face

10 Making budgeting decisions

Mobility component:

11 Planning and following a journey

12 Moving around

David Bone and Bridget Colloby felt let down by the government and other caption text

www.cafamily.org.uk

ummer 2013 | connected

21

news

Could you benefit from joining a local parent support group?

Contact a Family Wales surveyed support groups and professionals who overwhelmingly said, “Yes!” A key cornerstone of Early Support in Wales is mutual support for parents of disabled children. Meeting other parents is a great way to share experiences and learn from each other, and a positive way to overcome stigma and discrimination.

As part of our involvement in Early Support in Wales, we wanted to find out how parent groups support families across Wales. Our parent support group survey was sent to both parents and professionals. Here are some of our key findings.

The benefits of support groups

Parents and professionals reported a range of benefits of attending support groups as a way to: • get mutual support • pass on experience • feel less isolated • take part in family activities.

The benefits for families

“advice, information is all shared within the group. ” To be in an environment “ like-minded people of Support, friendship,

who understand the issues involved in bringing up a special needs child, and also to be in an environment where I’m never judged.

”

“

Somewhere for children to go to and not feel the odd one out. Enormous support that parents give to one another.

”

22

connected | ummer 2013

They said support groups helped them...

“family where they and To feel like a normal

their children are not judged.

”

“

Chat, offer each other support, socialise without being judged, learn new things, have discussions, problem solve.

“

”

They provide nonjudgemental environments for the children to play, socialise and be themselves.

”

Why go to support groups?

Parents reported a variety of reasons for attending support groups: • to share their problems, gain advice and support • to undertake activities, for example days out, pamper days for parents, going to cinema • for their children to play in a safe environment • to have an understanding environment.

The overwhelming majority of parents reported a positive experience of attending support groups, emphasising that through going along it reduced their sense of discrimination, stigma and feelings of isolation.

Others went on to describe some drawbacks and a number of barriers to attending groups – such as a shortage of support groups in their area, poor information about what is available and meeting times not being ideally suited for working parents.

To order a copy of the full report, please call Contact a Family Wales on 029 2039 6624 or email us at wales.office@cafamily.org.uk. You can also download it from www.cafamily.org.uk/parentsupportgroupsurvey If you know of any support groups in your local area please let us know so we can pass on their details to parents.

If you would like to a find out about support groups in your area in Wales please call us on 029 2039 6624.

If there is not a national or local support group in your area, you might decide to set one up yourself. We can help you start up a group, attract and keep members, campaign and more. See www.cafamily.org.uk/supportgroups 400

benefit news

How much is PIP?

PIP is paid at the following weekly rates.

Daily living component: standard rate – £53.00 enhanced rate – £79.15 Mobility component standard rate – £21.00 enhanced rate – £55.25

> > > >

Personal Independence Payment What does it means for young people? Parent adviser Judith Hodson, on the new disability benefit replaicing DLA for adults What is PIP?

Personal Independence Payment (PIP) is a new disability benefit replacing Disability Living Allowance (DLA) for people aged 16 to 64. DLA continues for children aged under 16. Like DLA, PIP has two parts – the mobility component and the daily living component.

When will my child claim PIP?

If your child is 16 or over and makes a new claim for disability benefit after 10 June 2013, they will claim PIP. However, different rules apply if your child has an existing DLA award. If your child becomes 16 on or before 6 October 2013 and their DLA is ending, they will be sent renewal forms to www.cafamily.org.uk

reclaim DLA, and will transfer to PIP at a later date.

However, if your child is 16 after 6 October they will be invited to claim PIP shortly after their birthday (unless terminally ill). If their DLA is supposed to stop on their sixteenth birthday, special rules will allow these payments to temporarily continue until a decision is made on their PIP claim.

From 7 October 2013, disabled people who already receive DLA will also bereassessed under PIP if their award is up for renewal, or if they report a change in their circumstances, or if they volunteer to claim early (seek advicefirst as many claimants will be worse off under PIP). All other existing DLA claimants will be reassessed

between October 2015 – 2017, including those with an indefinite award.

These dates apply in England, Wales and Scotland. At the time of writing, no date has yet been fixed for PIP’s introduction in Northern Ireland, and will depend on the passage of the Welfare Reform Bill through the Northern Ireland Assembly.

How is PIP assessed?

Your child first needs to complete a basic claim form, which is normally done over the telephone. They will then be sent a paper questionnaire ‘How Your Disability Affects You’ to complete. In most cases, your child will also be asked to attend a faceto-face assessment with a health care professional appointed by the Department for Work and Pensions (DWP). You, or someone else, can accompany your child to the assessment and you can also submit extra evidenceat any time.

How does may child qualify for PIP?

Entitlement to PIP depends on how your child’s condition affects their ability to carry out certain activities necessary for independent living.

Points are awarded for each activity your child is assessed as having difficulty with, the amount varying ummer 2013 | connected

23

benefit news

Your child first needs to complete a basic claim form, which is normally done over the telephone

PIP criteria – the activities that are assessed Daily living component:

1 Preparing food 2 Taking nutrition 3 Managing therapy or

monitoring a health condition

4 Washing and bathing 5 Managing toilet needs or incontinence

6 Dressing and undressing 7 Communicating verbally 8 Reading and understanding signs, symbols and words

9 Engaging with other people face to face

10 Making budgeting decisions

Mobility component:

11 Planning and following a journey

12 Moving around

24

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depending on the level of difficulty.

Their total score from activities 1 to 10 decides whether they get the daily living component and at what rate.

Their combined score from activities 11 and 12 are added together to decide whether they get the mobility component and at what rate.

For each component, if you score 8 – 11 points, you will qualify for the standard rate, 12 points or more will lead to the enhanced rate. If you score less than 8 points, you will be refused that component of PIP.

For more about PIP, including the scoring system, see our new guide Personal independence Payment and other benefits at 16 – available free from our freephone helpline on 0808 808 3555. 600

network news

Local Groups Network Groups that have recently joined our Network

or disability. Call Contact a Family for more details.

Find out more about joining the Network and promoting your group by emailing adele.m@ cafamily.org.uk

East Sussex Newhaven Autism Support Group Supported by Families for Autism, the group meets once a fortnight. A monthly training course covers topics such as behaviour, sensory issues and psychological characteristics. Both sessions run from 10am to 12pm.

Lancashire Seesaws This group holds meet ups, days out and parties! Coffee mornings are held fortnightly and one Saturday per month. Areas it covers are Blackpool, Wyre and Fylde.

Northants Time4Support Supports parents and carers of special needs children in Northamptonshire and offers advice, support and information, stay and play sessions and carers nights out.

Hull Special Stars Hold play sessions for disabled children and their families on the first and third Sunday of the month.

Nottingham Cypress Groups are setting up in Amber Valley, Bolsover, Chesterfield, Erewash and North East Derbyshire to offer friendly and welcoming sessions for families, carers, personal assistants and others who live or work with children and young people with any additional need www.cafamily.org.uk

Reading Link-up Run by a family support worker from Parents and Children Together at Coley Park Children’s Centre, the group has a monthly meeting and offers trips during the school holidays. There are regular lunch meetings with speakers on relevant topics.

Liverpool Sunrise Club A parent support group in Knowsley with a crèche for pre-school children so parents can have time to chat. During the school holidays they run a play scheme.

Leeds Carers Leeds Provides information and support for carers in Leeds and runs support group for parent carers. The ‘Time for Carers Scheme’ allows carers to apply for up to £250 for a holiday or up to £100 for other types of breaks.

Milton Keynes Carers Milton Keynes Provides general support to all informal carers but specifically to parent carers who can involve themselves in training; social events and other support groups.

Thurrock Parent Peer Support Group Coffee mornings held every other Monday for support at South Ockendon Centre offering parent 2 parent befriending; training for parents and a lending library and works in conjunction with parent partnership services.

South East Southern Hydrocephalus and Spina Bifida Foundation For people living in Dorset, Hampshire and Wiltshire, together with their carers and family. Offers home visits and

coffee mornings, local information and social events and leisure activities for all age groups. Grants are available for items which will not be funded by larger charities or the NHS; for example, a secondary hoist for a mobility vehicle, expenses for hospital stays for people living a long way from hospital. Grants are not limited to those living below a certain income.

Suffolk Parent Support Group, Felixstowe Local parents/carers of children of any age with any form of disability are welcome to attend monthly meetings on a Wednesday morning. The group is run on behalf of the Suffolk Parent Carer Network (SPCN).

Ipswich and District Deaf Children’s Society (IDDCS) Supports deaf children and their families in Ipswich and the surrounding area. Events and outings are organised throughout the year giving families opportunities to meet and for children to get to know each other. They also have a facebook page IDDCS. UK-wide Tourettes Action Living with Tourettes can be difficult.

Visit www.tourettes-action.org.uk/localgroups to see if there is a group in your area. 550

For details of groups listed in connected and others, call our freephone helpline

0808 808 3555 ummer 2013 | connected

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Focus on...

Pioneering parents We asked you to let us know what you do apart from caring for your disabled children. And we’ve been thrilled by the number of parents who sent in stories about all the fantastic work going on around the UK – from running local and national support groups, to setting up new services and clubs.

It’s striking that all the projects you told us about are directly inspired by your experiences

as parents of disabled children. Many of you are full-time carers, and we know that you save the government millions of pounds each year looking after your children. As well as battling for support, many carers also make other huge, positive contributions to society.

Here, you can read about some fantastic projects – including an awardwinning respite centre, a sports clubs, and an art project.

For art’s sake Maggie Raja, on how a monthly art session turned into artist’s gift shop and café, Anglesey Good Gifts Carers and friends have built up our charity Anglesey Good Gifts.

Three years ago, it was a monthly session of music, art, dance, chat, and refreshments. All were welcome, with a focus on those with special needs being affirmed. My nine year old son was recovering physically and emotionally from his second heart surgery when the club began, and the environment helped both of us.

In July 2012, a shop opened to give opportunities for local artists with or without special needs, to celebrate their talent and raise funds for the Charity. The shop is a friendly place for club members, as well as the public,

“I have the joy of expressing my vision through art and design again“ 26

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to hang out.

I was a designer and buyer prior to my son’s birth, but had to give up work and social life to care. Now I have a little range of cards and prints on sale at the shop. My free time remains extremely limited and one piece can take weeks to complete.

However, I have the joy of expressing my vision through art and design again. I have also made good friends, and know the profits assist a deserving cause.

Thanks to a grant, the shop has just been renovated and has a café for a cuppa and a cake at one end. It inspires all involved to overcome challenges and celebrate the value of special lives. To find out more about Anglesey Good Gifts, visit their website http:// angleseygoodgifts.co.uk 250

pioneering parents

Free Cakes for Kids!

Malte interviews a mother who turned her passion for baking into a community service for families in Stockport*

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ikki Lawson and her husband, Mik, are both registered carers and have five children. Raven is 11, Phoenix is nine, Kaden, aged seven has epilepsy and ASD, Mikey is five and has ASD, ADHD, symphysis pubis dysfunction and separation disorder. Jack, 18 months old, has severe Gastroesophageal reflux.

What brought you to start a Free Cakes for Kids group in your community?

Well, I have two disabled boys and spend a lot of time working with charities and hospitals anyway. So I had a good idea of how many parents there are that could do with a bit of help.

I was going to go into professional cakemaking, but when that became a bit much, I emailed to become a volunteer.

But since there was no group in my area yet, I had to start one myself. That’s how Free Cakes for Kids Southport came about. I really see how it makes a difference – especially for the parents, who have always been extremely happy and grateful for the help.

One specialty of your group are “character visits”. What is that about?

David Bone and Bridget Colloby felt let down by the government and

www.cafamily.org.uk

I have a friend who has a party business. We were talking about Free Cakes for Kids, and she really liked it.

So since she has all these costumes and fancy outfits, we were wondering how much fun it would be if the cake was handed over by the kid’s favourite character.

So, for example, the other day a girl in a hospital wanted a Peppa Pig cake.

We made one, and with us came my friend in a Peppa Pig outfit. You cannot believe how happy that girl was. She was on cloud nine and even started to cry. So whenever we can, we try to match the cake with a character. It doesn’t always work out, but we try hard. It’s just so much fun.

A lof of people find it difficult to start a group, especially in the first few months when many volunteer to bake a cake but not so many request one. What worked for you and what didn’t?

Of course, it wasn’t easy in the beginning. We had to figure out who was in for a cake and how to get the word out to a broader audience. One thing that really worked well for us was Facebook. I had set up a page for our group and started “liking” other charities, and they “liked” us back. So I built a bit of a network and got in touch that way with a lot of organisations.

Some of those then put us in their newsletters so that people without internet also had our contact details.

I found that people just love the idea, although sometimes it needs a bit of explaining. For some people, what we do seems too good to be true, so they expect some sort of catch. But of course there is no catch.

Another thing I got careful about was signing up new volunteers. At the moment, we only have a small team of volunteers – but I know that they are 100 per cent committed and that I can

“I found that people just love the idea, although sometimes it needs a bit of explaining“ always call them if we need a cake. It’s really been a bit crazy with all the requests coming in from children centres, hospitals and individual parents. 550 * The original version of this interview

by Malte appeared on the Free Cakes for Kids blog

This is a UK-wide community service for families who find it difficult to provide a birthday cake for their child. There are now over 60 local groups. Find out if there is a group near you or how to start a new group at www. freecakesforkids. org.uk ummer 2013 | connected

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pioneering parents

Coke floats & chemo

Yvonne Newbold adapted the blog of her illness into a play, performing on stage with friends, family and a mischievous puppet

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arenting three disabled children had me running completely on empty, with sleepless nights, round-the-clock personal care, gastrostomy feeding, social isolation and dealing daily with professionals. So when I was diagnosed with bi-lateral breast cancer last year, there aren’t words to convey my sense of brutal devastation and shock.

This all happened just three weeks after my middle and most disabled son, Toby, turned 18, and we had been launched, battered and bruised, into that frightening place called “Adult Services”.

The team I had grown to know and trust were replaced by a bunch of strangers working towards completely different frameworks and agendas.

So how did it happen that, exactly a year later, I’m performing on-stage at the Brighton Fringe, in a comedy version of what should have been my worst year ever – Coke Floats & Chemo – based on the blog I started keeping soon after my diagnosis.

I didn’t realise it at the time, but parenting my three kids has been the perfect training ground for dealing with a lifethreatening illness.

When Toby was tiny, he spent most of his first five years in hospital

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hovering between life and death, and I spent virtually all the time I wasn’t by his bedside updating all our family and friends in dozens of phonecalls, which was exhausting, draining and depressing. I just knew I couldn’t do all that again, so I started a blog, yvonnenewbold.on tblogspot.co.uk, as a way of imparting my medical updates to the people who matter.

I’d never kept a blog before, and something odd happened. During even the worst times, the funny side would creep onto the page all by itself, and had me laughing. Soon, strangers started reading it, hundreds of them from all over the world, it had gone global.

More space allows for crossheads Having cancer is something that everyone can relate to in a way that they just can’t about having disabled children. People assume it’s the hardest thing to deal with.

I promise you it isn’t, but I’m now getting all the support, sympathy and practical help I so desperately needed during some of the darkest days of my children’s early years, which doesn’t seem right.

My kids have taught me stacks about resilience, patience and coping with the unexpected, which has made having cancer so much easier. They also ensured I was medically-savvy, which has made me more confident and assertive with my own medical team.

This whole cancer malarkey has also shown me that the adult services

pioneering parents

“My kids have taught me stacks about resilience, patience and coping..”

David Bone and Bridgget Colloby

“bunch of strangers” I so dreaded are lovely, warm people who have pulled together magnificently, delivering an outstanding package of care, concern and practical support.

Just before Christmas, Sheree Vickers, of the Savvy Theatre Company, suggested we turn the blog into theatre.

Initially, we didn’t know how well I’d be, so Sheree commissioned a lookalike puppet, miniYvonne, to share my role.

More space allows for crossheads We’re doing another performance locally, then if there is a demand, a small tour. We may also have DVDs of the show to sell too.

Meanwhile, I’ve been interviewed by newspapers, on the radio and for websites - it’s just been far too glamorous for words. This all happened just three weeks after my middle and most disabled son, Toby, turned 18, and we had been launched, battered and bruised, into that frightening place called “Adult Services”.

So how did it happen that, exactly a year later, I’m performing on-stage at the Brighton Fringe, in a comedy version of what should have been my worst year ever – Coke Floats & Chemo – based on the blog I started keeping soon after my diagnosis.

I didn’t realise it at the time, but parenting my three kids has been the perfect training ground for dealing with a life-threatening illness.

When Toby was tiny, he spent most of his first five years in hospital hovering between life and death, and I spent virtually all the time I wasn’t by his bedside updating all our family and friends in dozens of phonecalls, which was exhausting, draining and depressing. I just knew I couldn’t do all that again, so I started a blog, yvonnenewbold.on tblogspot.co.uk, as a way of imparting my medical updates to the people who matter.

Three is a good number Having cancer is something that everyone can relate to in a way that they just can’t about having disabled children. People assume it’s the hardest thing to deal with.

I promise you it isn’t, but I’m now getting all the support, sympathy and practical help I so desperately needed during some of the darkest days of my children’s early

“My kids have taught me stacks about resilience, patience and coping..” www.cafamily.org.uk

years, which doesn’t seem right.

The very week our play opened, I got some rather difficult news. All the treatment I’ve had hasn’t caught the cancer in time and it has spread to my spine, which means it’s now incurable, and my life-expectancy is reduced.

Another lesson from Toby – in his early days no one expected him to live, and 38 times we were told to expect the worst. He is now 19! Terminally ill?

850 Phooey!

Contact Yvonne by leaving a comment on her blog, Coke Floats & Chemo at yvonnenewbold.blogspot. co.uk or on the Facebook page, Facebook/cokefloatsandchemo

David Bone and Bridgget Colloby

ummer 2013 | connected

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pioneering parents

New Hope An interview with Jean Wilson, founder of New Hope, the awardwinning respite care centre for children in Worcester

Hi Jean, thanks for talking with us. Can you tell us a little about you and your family?

I’m mum to Tara aged 28, William aged 26 and to Emily aged 10, and granny to Tyler aged eight. I live and work in Worcester.

What is New Hope?

New Hope is a daytime respite centre for families who have children with disabilities. Our work is twofold really; firstly, to support and enable our children to access leisure activities of their choice during every school holiday, and every Saturday throughout the year.

Whilst the children are out and about having fun, their parents and carers are able to receive regular, meaningful breaks from their caring responsibilities. We have our own purpose-built building complete with ball pit, multi-sensory room and a lovely outdoor play area.

Why did you start this project?

My own daughter Emily has severe learning disabilities and when I moved back to Worcestershire from Scotland, I was shocked to discover that there were not many services that seemed “right” for Emily. What was on offer didn’t really meet her needs, or mine 30

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as her Mum. Services were not offered year round. Christmas in particular was pretty bleak as a carer as everything was shut! I got to thinking there must be other parents like me who were struggling, so I asked other mums what they thought.

Their response was much as I suspected, that service provision was sparse to say the least! This gave me the encouragement I needed, I approached a local social housing provider to see if they could help me with finding a building.

To my delight they offered me our current building rent-free for three years. New Hope was born!

I called the project New Hope as I wanted its ethos to offer “New Hope” to families like mine. We opened in July 2010 supporting three families and now we support 70 families, a huge growth in a short space of time.

be at the building with my other two children painting and decorating! I guess the excitement of seeing the birth of something new gives you more energy!

What do you, Emily and other families gain from having New Hope in the area?

Emily absolutely loves going to New Hope. She giggles away when she starts her day. And she loves the staff who work with her and has come on in leaps and bounds since she is no longer socially isolated. Families tell me, “New Hope is my lifeline,” and, “I no longer dread the long summer holidays.”

How did you manage to get New Hope up and running whilst being a mother and a carer?

Emily does not sleep well and that worked in my favour really! As she was up in the night playing in her secure tent, I was able to carry out all the paper work and planning in the middle of the night!

And when she was at school, I’d

David Bone and Bridget Colloby felt let down by the government

pioneering parents

“I decided to take matters into my own hands”

“Emily loves the staff who work with her and has come on in leaps and bounds, since she is no longer socially isolated.”

Liz Jones couldn’t find a support group for her son’s condition, so she set one up

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Awards, I think, are a great way of highlighting the role of parents who are also carers – a role I think that often gets overlooked. Awards bring an awareness of disability into the wider public arena within childhood and the importance of parent carer receiving well deserved breaks. I always accept awards on behalf of all my parents/carers, as I think they do a brilliant job in often difficult circumstances, but always with a smile on their faces. My hat comes off to them all.

n May 2009, my son Isaac was born – which was the most special day of my life – but also one of the most traumatic. Shortly after birth we noticed that both his ears were underdeveloped.

We had a long wait to see a paediatrician and then the long stream of tests and scans started. I was desperate to just enjoy my beautiful new baby but we were living on a knife’s edge not knowing what the results of tests and scan would hold.

We feared many things – will Isaac be profoundly deaf? Will we have to learn Sign language? Will we ever be able to communicate with him? Would he have learning difficulties? Would he have other medical problems? Would he ever walk? Our list of questions were endless and no-one seemed to have the answers.

At the age of six weeks old, Isaac received a bone conduction aid on a headband which gave him the ability to hear most things. Over time, the appointments became fewer and further between and we could enjoy our lovely little boy who now had a diagnosis of Microtia.

I was still, however, left with so many questions and felt pretty isolated and alone. I tried to find other people with Microtia in the UK but could not find anyone.

I was left wondering whether Isaac was the only one! I was desperate to know what the future held for Isaac and really wanted to speak to someone who was going through the same thing.

When Isaac was 18 months old, I decided to take matters into my own hands by setting up a support group for children, families and adults affected

by Microtia in the UK. In just over two years, Microtia Mingle UK has nearly 350 members! The group is highly valued by its members.

We have an online forum (through Facebook) which allows people to have daily contact and support.

The forum is used to share experiences, ask questions and to get to know other people affected by Microtia. We also have a website, www.microtiamingle.co.uk which contains useful resources and links to articles and blogs.

Each year more and more mingles are being organised across the UK. This year meets have been organised in London, South of England, North of England, Wales, Northern Ireland and Scotland.

Mingles give people the opportunity to meet face to face and they help us to develop as a community. Our members range from babies with Microtia, to teenagers and adults. We have some truly inspiring and positive role models amongst us!

I have also written a book for young children with Microtia to help them to become aware of their little ears and their bone conduction aids. It is called Isaac and Lilah and copies can be ordered through our website.

Visit the New Hope website www.newhopeworcester.co.uk 650

To find out more about setting up and running parent support groups, read our action pack guides at www.cafamily.org.uk/supportgroups 500

I gain the satisfaction of seeing a lot of happy, engaged children enjoying an ordinary life which I think is wonderful and my own daughter with a smile on her face, I can’t ask for more than that.

Last year, New Hope was awarded the Social Enterprise (SE) West Midlands, SE Awards in both SE Inspiration Category and the SE People Award for the contribution they make to their local community. What do the awards mean to you and to New Hope?

www.cafamily.org.uk

ummer 2013 | connected

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Find out more about disability snowsports Disabled Snowsport UK (DSUK) Works to make sure anyone with a disability, can skide other people. www. disabilitysnowsport.org.uk Ski 2 Freedom Foundation Promotes snow sport and mountain activities for disabled, special needs, and disadvantaged children and adults. www.ski2freedom.com

A dream achieved O

ne day, I was walking by the TV and a news item about the ski team representing Wales in the Special Olympics caught my attention. I wondered if our daughter, Alissa, who has Down’s syndrome, could learn to ski. I am an ‘intermediate’ skier at best but had gone on ski trips with our other children.

Though there was a Riding for the Disabled chapter nearby in our rural area of West Wales, in those days there were no other disability sports on offer.

So, one Sunday morning, we drove 45 miles to an artificial slope in Carmarthenshire to a disabled ski session. Alissa was the only child. Then a crazy thought came to my mind – maybe we could start a disabled ski club for kids closer to home.

First of all, there was the matter of equipment. For wheelchair users we would need sit skis. These are not cheap. Made in America, they would cost over £1,500 each.

We would also need helmets and a trailer to store and transport the equipment. Then there was the matter of training.

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Alex Elsaesser explains how he set up a ski club for disabled children and their families

The ski club remained an idea until every county in Wales got a part-time disabled sports development officer.

What a Godsend our county officer was. She supported the vision and helped me apply for grants. Sports Wales helped us with the equipment and training, while Children in Need provided funds for the trailer.

With the help of the Urdd Ski Centre in Llangrannog, we began monthly

“I feel constantly under pressure to look like I know what I’m doing” sessions. Rather than have only the disabled member of the family learn to ski, we welcomed siblings to join in – and even some of the parents – to have a go.

We met another new charity with the same ethos in the Swansea-Neath area, called Ice Cool Kids. They are a larger club and have raised money to take kids on ski trips to the French Alps.

Last Easter, I helped out with beginner skiers at La Plagne. Alissa’s older sister Jess has become proficient at guiding a sit ski. Alissa, now aged 21 and a third year student at Derwen College, helped me with the beginners.

There are many disabled ski groups in the UK. Some are based in Snowdomes, while the rest of us have to endure artificial slopes (but they are cheaper!).

Disabled Snowsport UK (DSUK) is a good contact and there is a disability sports officer in most local authorities in the UK. There has been a much greater interest in disabled sports since the Paralympics last year.

Alex Elsaesser and his wife Renie have nine grown-up children and live in West Wales. ALex works for the charity Cerebra in Carmarthen. Along with volunteering with skiing, he belongs to the Wales Council of Contact a Family, helps out as a parent representative with local social services and chairs a local carers group.

Read about holidays, play and leisure on our website www.cafamily. org.uk/play 481

pioneering parents

Who am I now?

Karen Wooddissee uses her experience of working and being a parent of a child who has autism to train parents and professionals

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hen I was younger I had a very clear idea of who I was: “Karen”. I was an adult with lots of skills, knowledge and experience built up over a long period of full-time work. I was a contributor; to my workplace, my home, my family.

This lasted for a long time, I certainly didn’t become a mother at a young age; I thought that there was plenty of time. I enjoyed my work, especially the ever changing group of people with whom I came into contact. I was not certain that being a mother would suit me anyway!

When I became a mother, things began to change – my job was made redundant – nothing to return to! Not to worry, I had my daughter and she seemed to take up all my time, even though she was such a dream baby.

Maybe being a mother wasn’t going to be too bad after all? I became “Anya’s Mum.” Two years later, my son was born.

He was different from the start, often sickly, always unhappy and clingy and crying. There never seemed to be a moment’s peace, or was that just because there were two? For a while I was “Anya and Mark’s Mum”.

I had started to do some small pieces of freelance work; recruitment, team development events, training, lots

www.cafamily.org.uk

David Bone and Bridget Colloby felt let down by the government and other caption text

of short-term projects using the skills that I had worked so hard to develop during my years as “Karen”.

I joined the management committee of the opportunity group that Mark and I had started to attend.

Despite this, I had become “the Mum of that badly-behaved boy.”

I tried so hard to find a nursery that would take a toddler who needed lots of support. He seemed to struggle with his speech and needed his nappies changed regularly, surely that wasn’t too different, was it?

I longed to be “Karen” again, Anya

“

I feel constantly under pressure to look like I know what I’m doing

“

was in school, but caring for my two children didn’t seem to have got any easier!

Mark was given a diagnosis of Autism and, after the usual battles, started school, where he began to learn so much more than I seemed to have been able to help him with.

At last, with time on my hands, but not able to return to full-time work – no childcare available – I began to look around for other things that would use my skills and give me a break from caring.

The voluntary sector provided the answer, I joined the Board of the

local Autistic Society, and the local authority was looking for shadow board members for the new housing association due to take ownership of their social housing.

These organisations were great for me, not only did I feel that I was making a proper contribution again, but also a real difference to things that really mattered – where was Mark going to live when he grew up?

I was soon fully occupied in this new world, using all my previous skills and knowledge, just applying it to other sectors and learning new things too.

I joined the Board of other local and national charities and gradually spent more time being “Karen” again.

I went to the launch of the Early Support Pathfinder in my area. I met the people who would be responsible for taking this forward locally soon after I was invited to be one of a small group of parents who would be involved with the training for practitioners.

This was the beginning of ten happy years where I have been able to combine my skills from the now distant past with my very current knowledge and develop new skills.

I have had the opportunity to not just deliver training, but also to write it and train others to deliver it! And not just for practitioners but for parents too.

All this just because “Anya and Mark’s Mum” went along to share her experiences at a meeting...

For information on working on visit our website at www.cafamily.org.uk/ working 650

ummer 2013 | connected

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resources

Dealing with bullying at school For some parents and children, the prospect of starting a new school can cause anxiety. You may worry whether your child will be accepted and make new friends, or be vulnerable to being bullied. It’s important to remember, though, that schools have a legal ‘duty of care’ towards their pupils. This means the school must look after the safety and wellbeing of their pupils as a reasonable parent would.

If anything is causing concern, or your child has already experienced bullying you don’t need to deal with it all yourself. Let the new school know and ask if you can speak to the SENCO. Ask to see the school’s antibullying policy, which may be part of the behaviour policy. This will include details of what the school does to prevent bullying and what steps they will take when someone reports a bullying incident.

Contact a Family is pleased to have been successful, in a partnership bid with Mencap, the Anti-Bullying Alliance and Achievement for All to deliver support and advice for parent carers in relation to bullying of disabled children and young people. Achievement for All will

also be providing specific support, advice and expertise to schools.

We’ll share more information about the programme.

Call our freephone helpline on 0808 808 3555 if you are concerned about bullying and ask for a copy of our guide. Visit the education pages www.cafamily.org.uk/bullying-atschool

erebra offers equipment grants Cerebra’s grants scheme funds up to 80 per cent of the cost of equipment that can make a huge difference in the life of a child with a neurological disorder.

Some examples of things Cerebra has funded in the past include wheelchairs, buggies, sensory toys, certain therapies within the UK and speech and language therapy.

These are just a few things we can help with that can make life easier and more fun for a child who could be living with anything from autism, to Down syndrome, or cerebral palsy.

Find out more and download a form from Cerebra’s website bit.ly/ opqAl7 Call Cerebra on 0800 328

Max the Champion Max is the hero of inclusive children’s picture book by Sean Stockdale and Alexandra Strick, and illustrated by Ros Asquith.

The book shows children with and without disabilities enjoying sport together in an attractive and funny mainstream picture book.

The Max the Champion website, has resources, activities and ideas for discussing inclusion in schools www. maxthechampion.co.uk

1159, or email: debbieg@cerebra.org. uk. Call Contact a Family’s freephone helpline on 0808 808 3555 to ask about other grants

Family Fund launches ‘driving ambitions’ grant Family Fund has a new grant scheme to help eligible young people aged 16 and 17 take the first steps in learning how to drive. The Driving Ambitions grant supports a young person get started by funding a combination of: ■■ provisional license Highway Code or Theory test book ■■ theory test or DVD ■■ learning materials, such as the ■■ first taster lesson.

This grant is only available for eligible young people who have not yet had any driving lesson tuition.

For more information, visit www.familyfund.org.uk or email info@ familyfund.org.uk

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Our guides for parents We publish new guides for parents throughout the year. Parents can call our freephone helpline on 0808 808 3555 and ask for a free copy of any of our guides. 450

profile

A day in the life of...

Sheila Davies Parents’ dedication, hard work and good humour never fail to inspire Contact a Family’s parent participation (health) manager

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ne reason I love my job is the fact for local hospitals and community services. each day can be quite different. My Most GPs do not get any training on working remit is to improve the way health with disabled children. I recently wrote two services support disabled children, young guides for GPs to explain the common problems people and their families in England. No families face and the services disabled children simple task – but well worth the effort. I am and young people need. I presented this to a based in London but frequently travel across conference of GPs and asked them to consider the country. taking more of a role in making sure disabled Like many people at Contact a Family, my children and their families were supported on motivation for the job stems common issues such as sleep, from personal experience. behaviour and dental care. I My daughter became ill with was very pleased they seemed “It is only by chronic fatigue syndrome at really receptive to this idea and listening to parents’ I now hope to get this included the age of ten. Before then, I assumed if a child was sick or in GPs training. experiences that disabled then services would

Part of my job I can begin to be there to support them. Like includes writing up success understand what many others – I learnt the hard stories describing how parent way! I now look forward to the carer forums have helped their common day when parents no longer bring about improvements in problems are” struggle to find out about and services. A recent example access support for their children came from Kirklees, where and themselves. school staff and parents On some days, you’ll are learning strategies to find me trying to influence support children with learning government polices and disabilities who could develop guidance and national clinical and commissioning behaviour that challenges. guidelines. Getting the wording right in these What I most enjoy about my work, is meeting influences how services are provided locally. parents of disabled children who are members of I also work with parent carer forums, their forum. It is only by listening to parents’ developed across England to improve how local experiences that I can begin to understand what services are provided. I let forums know how they their common problems are. It is also impossible can get involved and about national policies and for me to bring about change without parent guidance which will help them in ‘making a case’ carer forums also working to achieve similar goals for improving local services. in their local area. It is these parents’ dedication, I welcome opportunities to work with hard work and good humour which never fails to clinicians through organisations such as the inspire me, and I return back to London more British Academy of Childhood Disability(BACD). motivated than ever.

This helps me understand what prevents health You can read this and other case studies professionals providing a decent service – often on the Contact a family website at funding and staffing levels. More recently, I have www.cafamily.org.uk/parentcarerparticipation been trying to influence GPs as GP-led clinical 513 commissioning groups now control the budgets

www.cafamily.org.uk

ummer 2013 | connected

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020 7608 8700 info@cafamily.org.uk www.cafamily.co.uk

We’re here to help Call our freephone helpline for ‘one-stopshop’ advice and information on any aspect of caring for a disabled child.

Our education advisers can help you with: early years and preschool ■■ exclusion ■■ transport getting extra help in ■■ support for medical school ■■ statements of special needs ■■ education after 16 educational need ■■ bullying ■■ ■■

Our general advisers can help you with: enefits or tax credits b issues ■■ details of local and national parent support groups ■■ information about your child’s condition ■■ how to access help with getting a break from ■■

caring etails of charities which d give grants to families with disabled children ■■ advice and information on any other aspect of caring for a disabled child.

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w www.facebook.com/contactafamily www.twitter.com/contactafamily www.youtube.com/cafamily

Local support from Contact a Family Volunteer parent representatives Contact a Family has a team of volunteer parent representatives around the UK. As parents or carers of children with special needs and disabilities, our volunteer parent representatives fully appreciate the impact of caring for children with complex needs.

They offer parents someone to talk to, provide information and signpost families to local sources of information and support.

Parent advisers and family workers Contact a Family’s experienced staff cover many parts of the UK. We can help parents with a wide range of issues that families face when caring for a disabled child – from advice on claiming benefits, and special education needs, to putting you in touch with local and national sources of support. We also support families in times of particular need and help build parent’s knowledge and confidence through a range of information sessions and events.

To find out if we have workers or a volunteer parent representative near you, phone our freephone helpline on 0808 808 3555 or visit our website www.cafamily.

0808 808 3555 helpline@cafamily.org.uk Open Monday to Friday, 9.30am–5pm Contact a Family is the only UK charity providing support and advice to parents whatever the medical condition or disability of their child.

Another house ad could go here Registered Office: 209–211 City Road, London EC1V 1JN. Registered Charity Number: 284912. Charity registered in Scotland Number: SC039169 Company limited by guarantee. Registered in England and Wales No. 1633333. VAT Registration No. GB 749 3846 82