Category: About Contact

Following the success of Contact NI’s rare conditions conference in January, a second event has been announced for next month in Northern Ireland.

“Supporting Children and Families living with Rare Diseases in Northern Ireland” will take place on Wednesday 15th May from 9.30am-1.30pm at the Dunsilly Hotel in Antrim.

Book your free place by using our Eventbrite page.

The free half-day conference is open to anyone caring for or supporting a child or young person with a rare condition. It will bring together parent carers and professionals to share experiences, find out about information and resources, and create a space for conversations and connections.

During the event, Contact will be launching a new report detailing some of the key findings from our January conference. The programme also includes taster workshops for parent carers and professionals, a Q&A panel discussion, and an exhibition hall where a number of local and national organisations will be on hand to offer information and support. The conference is being delivered in collaboration with the Northern Ireland Rare Disease Partnership, the Pears Foundation and Dormant Accounts Funding NI.

A free buffet lunch will also be provided at the end of the morning.

For more information and to book a place, please visit our Eventbrite page.

Last year, we told you about a research grant Contact has been awarded by National Institute for Health and Care Research (NIHR). We’re investigating what stops under-represented communities in the North West of England from accessing health care services.

Since then, we’ve been working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF) to develop this work further.

We know that many disabled and neurodivergent children and young people from under-served communities such as Black, Asian and minority ethnic groups and Traveller communities have less access to healthcare and poorer health outcomes. They can face discrimination, disadvantage and exclusion and have less choice and control about their health care.

So far, research in this area has been limited. So this project offers a unique opportunity for us to work in partnership with community members to explore what could help improve access to healthcare for disabled and neurodivergent children, young people and their parent carers.

What progress have we made so far?

We are currently working with three communities – Gypsy, Roma and Traveller families, refugee and asylum-seeking families and parent carers with disabilities and neurodivergence – and community advisers to listen and learn more about their experiences of accessing health care for their children. So far, we have: 

What have we learnt?

Although the project is still in it’s early stages we have already learnt that:

Last year, we had the privilege of supporting 291,000 families across England, Scotland, Wales and Northern Ireland with our advice and information. This includes helping eligible families increase their household incomes by an average £5,400 a year, through our Family Finances team.

We held over 103 family events which were enjoyed by 2,300 parent carers and children and our workshops, webinars, outreach or drop-ins were attended by over 5,500 parents and professionals.

More of you than ever before made use of our Listening Ear service to find emotional support, practical advice and a shoulder to cry on and over 20,000 of you are members of our private Facebook group sharing advice and supporting each other.

Help us be there for more families in 2024

We just wouldn’t be able to do what we do without the generosity of our supporters so, if you can, please consider helping us to be there for more families in 2024.

You could make a one-off donation or set up a regular monthly contribution. Or why not make a new year’s resolution to take part in our DinoDay Facebook Challenge in 2024. Join our weekly lottery and, like parent carer Samantha, you could have the chance of winning up to £10,000 every Friday!

Together we are making a difference for families with disabled children

Huge thanks to the thousands of you who took action last year to improve things for your family and others by writing to your MP, filling in one of our surveys or speaking out in the media. And with more than 200 of you becoming a Contact Changemaker, we continue to make sure parent carers are at the heart of our policy and campaigning work.

Throughout 2023 we proudly supported two parent-led campaigns: One to put an end to disabled young people being unfairly locked out of their Child Trust Fund savings, the other to make sure all eligible children have access to the free school lunch they are entitled to which was recently backed by Baroness Grey-Thompson.

We also worked with you to highlight the lack of holiday childcare for disabled children and the worrying 21% increase in calls to our helpline about children being excluded from school.

We continued to speak out about support for carers, the cost of living crisis and soaring energy prices.

And it was the year we finally saw the Department for Education publish its revised statutory home to school transport guidance for children of compulsory school age in England following Contact’s School Transport Inquiry.

More achievements in 2023

Take care and remember, we’re here for you in 2024 whatever your child’s condition and whenever you need us.

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Contact, working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF), have successfully secured a grant from the National Institute for Health and Care Research (NIHR) for a pioneering project which started this June. The project will be carried out over the next year and is focused on communities in the North West.

The research aims

Some disabled and neurodiverse children and young people from under-represented communities experience barriers accessing health care. Our research aims to investigate and co-produce solutions to reduce these barriers.

What difference could this research project make?

Helping under-represented communities

We know that many disabled and neurodivergent children and young people from under-served communities have less access to healthcare and have poorer health outcomes.

Children, young people and families from communities such as Black, Asian and minority ethnic groups and Traveller communities can face discrimination, disadvantage and exclusion and have less choice and control about their health care.

Improving access to health care

So far, research in this area has been limited. The project offers a unique and prestigious opportunity for Contact to work in partnership with community members to investigate what gets in the way of, and what could improve, access to health care for disabled and neurodivergent children, young people and their parent/carers.

The work we do thanks to this funding will help researchers, charities and services work out ways to work with under-served and under-represented communities and find out the most important areas to look at and solutions to test as part of a future grant. 

What will the project involve?

There are four distinct phases to this project:

 

5-11 June is Carers Week – a week that shines a spotlight on the vital role unpaid carers play in our communities.

Recent research shows that that unpaid carers – including parent carers – are providing more hours of care now than they were 10 years ago. Reduced support services such as respite care, physiotherapy, occupational and speech and language therapy, as well as mental health services means parent carers have been left to do more often complex care in their homes themselves and less able to combine work and caring.

Parent carers are at the heart of everything we do at Contact

As well as being here to support parent carers with our information, advice and support services for families, we campaign to tackle the inequalities parent carers face and raise awareness of the invaluable work they do caring for their children and young people with additional needs. Our current campaigns include:

And as the Department for Education’s delivery partner supporting parent carer participation in England, we also like to shout about the amazing work parent carers do as members of their local parent carer forums across England.

Watch our animation to find out more about us.

We’re delighted to unveil a new short animation which tells you all about Contact in around one and a half minutes.

We hope it will help raise awareness of Contact and the wide range of ways we can help so that more families get in touch with us to find the information, support and advice they need.

We hope you like it! And please share it with family and friends who you think could benefit from knowing more about us.

Find out more about Contact and all the ways we can help families with disabled children.

Thanks to National Lottery funding we are able to put on three ‘Better Together Through Sport’ activity days in West Yorkshire this summer.

We’ll use the funding of just under £10k to work in partnership with local Wakefield sport venue, Disability Sport Yorkshire, to run three events focusing on sport for children and young people with additional needs during the summer holidays.

We hope the weekly disability sport sessions will help reduce isolation and increase family confidence by enabling families to try out new sporting activities in a safe environment, make friends and share experiences with other families.

Watch our video about what difference sport can make to disabled children and young people.

Last year, parent carers that attend our Better Together events told us that they feel less isolated (86%), more confident (75%) and more informed about how to get the support they need (70%). Three quarters of the children and young people who attended said they made new friends and all of them said they would like to try the activities on offer again!

Hannah Hassouni in Contact’s fundraising team says: “We’re really looking forward to working with Disability Sport Yorkshire this summer and encouraging children with additional needs in the region to get involved and try something new.

“Families we support tell us that leisure and play opportunities for their children – after school, in the holidays and at weekends – are extremely limited and barriers like accessibility and cost can get in the way. Children with additional needs who are not given sporting opportunities can miss out on the physical, mental and social benefits that taking part in sport brings and their emotional and physical wellbeing can be negatively impacted which can contribute to their social isolation and lack of confidence. And because Contact’s family workers will also be on hand at these weekly sessions, parent carers will be able to talk to us directly and get direct access to Contact’s trusted information, advice and support.”

Read our Holidays, Play and Leisure webpage.

The government has published its plans to reform support for children with special educational needs and disabilities (SEND) in England today.

The SEND Improvement plan includes investment in training for thousands of workers so children can get the help they need earlier. This comes alongside thousands of additional specialist school places for those with the greatest needs.

The plan will be underpinned by new national SEND and AP (alternative provision) standards in order to reduce the postcode lottery that currently exists in the SEND support system. And to improve parents’ and carers’ experiences of accessing support, the plan aims to cut local bureaucracy. The process for assessing needs through Education Health and Care (EHC) plans will be digital-first, quicker and simpler wherever possible.

Contact comments on SEND Improvement plan

Commenting on the SEND Improvement Plan, Contact’s CEO Amanda Batten said:

“Contact and the families we support have waited a long time to see the government’s SEND improvement plan. We welcome the plan’s ambition to transform services for children with SEND in England. In particular, the focus on workforce and early help should make a real difference. This is especially so for children in mainstream education, ensuring their special educational needs are identified early.

“We also welcome the government’s commitment to increase the number of specialist school places. This is vital, as we know there is a shortage nationally. Some disabled children are waiting many months to find a suitable school place.

“However, throughout the consultation process, we heard from parents again and again about the need for greater accountability in the system. We aren’t confident that this plan has adequately addressed this. In addition, the government’s planned measures will take time to implement. We are concerned that the plan lacks urgency to address the crisis for children who are struggling without support in school today.”

Read the government’s Special Educational Needs and Disability and Alternative Provision Improvement Plan: Right Support, Right Place, Right Time in full.

Easy Read version of the Improvement plan.

Anna Bird, Contact's new CEO

We’re delighted to announce the appointment of our new CEO, Anna Bird.

Anna, an experienced leader in the not-for-profit sector, will replace outgoing CEO Amanda Batten, who has led Contact for the last nine years. Amanda will be stepping down at the end of March.

Anna has been very influential in the sector through her campaigning work on behalf of disabled people. She is currently the CEO of the European Movement, which she joined in September 2020. As CEO, she has grown support for the Movement and was responsible for designing and implementing their new strategy.

Previously, Anna led political influencing campaigns at Scope, the Fawcett Society and Mind. At Scope, Anna led the development of the organisation’s strategy, impact framework, and a roadmap for the rollout of new research and policy work. Prior to SCOPE, she was Acting and then Deputy Chief Executive for Fawcett Society.

Chris Carr, Chair of the Trustees, commented; “We are really excited to have Anna join us as CEO. Her wealth of sector experience, knowledge of the political landscape and strategic expertise make her an ideal leader to build on the work of Amanda and the team. We are confident about the future. And we believe Contact will have even greater impact for the benefit of families with disabled children under Anna’s leadership.  

“On behalf of the Trustees, I want to thank Amanda for her dedication, passion and work over the past nine years. She has led Contact through a period of growth and development, and she will be greatly missed. I’d also like to thank Jenny Jones, our Interim CEO, for her leadership until Anna joins us.”

Amanda Batten, CEO of Contact, added: “Anna is someone I’ve known and respected for a long time through our work in the sector. I couldn’t be happier that she has accepted this role. I am excited to see how Contact develops under her leadership.”

“I’m really excited to join Contact, a charity I have worked with for a number of years while at Scope and Mind. I have huge respect for the work they do to support families with disabled children.

“Many families are really struggling right now, because of the triple whammy of cost of living crisis, Covid isolation and long term underfunding of public services, and Contact’s support is more needed than ever, offering a genuine lifeline for many families with disabled children.

“Contact has an important role to play in creating social change for families who need it most. I’m looking forward to working with the brilliant team and parent carers who make up the Contact family, to grow the charity’s reach and impact at this critical time.”

Anna Bird, Contact’s newly appointed CEO

We’re delighted to let you know that Contact’s Helpline has been awarded the Helplines Partnership’s Standard accreditation for the fourth time in a row.

Our helpline advisers provide a first-rate service to families, advising parent carers on issues including benefits, education, getting a diagnosis and getting support.  

Achieving re-accreditation to the Helpline Partnership Quality Standard – the nationally recognised quality standard for helplines – for a further three years means that parents can be assured that they are receiving first rate information, advice and support from our team of helpline advisers.   

The assessment process included:

Our Helpline service offers more than just a phone line (0808 808 3555)

Last year our helpline team dealt with almost 11,000 enquiries.

Our Helpline includes:

·        Live Chat service allowing you to instantly talk to one of our parent advisers online via Charlie the Chatbot.

·        Email advice via our helpline form.

·        Enquiries posted on our social media channels including our private Facebook group.

2022 was yet another challenging year which saw the cost of living crisis impact on so many of the families we support. We know that this winter, thousands of families with seriously ill and disabled children won’t be able to afford to run the life-saving electrical equipment their child relies on.

If you can, please consider helping make sure we’re there for even more families when they need this winter and throughout 2023 by donating to Contact’s Winter Appeal.

And tune in to BBC Radio 4 on 8 January at 7:54am or 9:25pm to hear our appeal presented by broadcaster and Contact supporter, Jane Garvey.

What we achieved together in 2022

It’s been quite a year. During 2022 we:

We also:

In addition, there are now almost 17,000 members on our private Facebook group for parents and we also congratulated the first £10,000 jackpot winner of Contact’s Lottery helping us raise vital funds so we can support more families.

Take care and remember, we’re here whenever you need us in 2023!

Contact has announced today that Amanda Batten is to step down as Chief Executive in the spring of 2023.  

Amanda joined Contact in May 2014 and has been instrumental in driving the charity forward over the past eight years.    

Under Amanda’s leadership, Contact has made a substantial difference to the lives of families with disabled children. She has overseen major policy changes including the scrapping of rules that stopped disability payments for sick children in hospital and more recently improved Covid vaccine access for families.   

Amanda’s leadership has anchored and strengthened Contact’s cycle of support – supporting families, bringing families together and helping them take action for others. During her tenure, she has driven new programmes of support for families, as well as digital transformation and income diversification programmes that have enabled Contact to grow its reach, turnover and financial sustainability in a challenging external climate.  

Alongside her work as CEO, Amanda will be missed as an active leader in the sector. She brought partners and families together to set up the Disabled Children’s Partnership, a coalition of over 100 organisations, which plays an important role in campaigning for improved health and social care for disabled children, young people and their families.   

A passionate advocate for families of disabled children

Chris Carr, Chair of Contact’s Board of Trustees said: “We are truly sorry to see Amanda leave us. It is hard to imagine Contact without her, and the Board and I want to extend our thanks to her for her brilliant leadership, not least during the last few years of the pandemic.  She leaves Contact stronger in terms of our people, culture and finances, so we can continue to be here for families in the current challenging times and forward into the future.   

“Over the last eight years Amanda has worked tirelessly for Contact’s beneficiaries, and her legacy of policy change is testament to the passionate advocate she is for families of disabled children. The organisation has also benefitted from her excellent leadership skills, most recently being recognised as a Top Ten Charity to work for in the UK by Best Companies.   

“We are grateful that Amanda will stay in-role until March 2023 to ensure a smooth transition period, and will be job-sharing with our interim CEO, Jenny Jones, from January to March. It is typical of Amanda’s leadership that she wants to ensure she leaves Contact in the best possible position, and we thank her for her dedication and commitment.”  

Amanda Batten said: “It has been a real privilege to have had the opportunity to be part of Contact. I have learnt so much from the wonderful colleagues, trustees, partners and, perhaps most of all, from the parent carers of disabled children that I’ve worked with over the last eight years.   

“The time is right for me to take a career break. It has been a difficult decision to make but I know that I leave Contact well placed for whatever the future brings. I will continue to be a passionate advocate for disability and carers’ rights in whatever I do.”   

We will begin our search for a new Chief Executive shortly supported by Executive search company Peridot Partners.  

We are delighted to let you know that the Department for Education (DfE) has awarded Contact and partners National Network of Parent Carer Forums (NNPCF), Council for Disabled Children and KIDS, a new contract to make sure parent carers, children and young people are involved in the delivery of SEND services and provision in England and have access to information advice and support.

The DfE funding means that over the next three years Contact will continue to work with 152 parent carer forums in England to make sure their voices are heard at a local, regional and national level. The new contract which starts this month, also enables us to continue our support offer to families with disabled children through our online information and national helpline.

The Council for Disabled Children will continue to support the Information, Advice and Support Network and will, alongside KIDS be supporting children and young people’s participation in local, regional and national policy and practice.

Gail Walshe, Contact’s director of participation says: “It’s great that The DfE continues to recognise the importance of having parent carers, children and young people at the heart of shaping disabled children’s services, the invaluable support of our online and helpline advice service and local SEND Information, Advice and Support Services (SENDIASS).  

“Contact has acted as the delivery partner to the DfE to support parent carer forums since 2008. Our new contract enables us to build on this and to also reach even more parent carers with our high-quality impartial information and advice. We look forward to working jointly with our consortium partners to improve the links between parent carer and children and young people’s forums so that more children and young people have an active voice in decision-making in their local areas.”

Contact will lead the work carried out by the consortium in this new contract which aims to:

Children and Families Minister Will Quince said:“Contact and their partners do fantastic work to make sure parent carers and young people are directly involved in how local SEND services work for them.

“This new government contract and grant funding, of over £17 million for three years, will support Contact’s work and make sure parents and young people’s voices continue to be heard at a local, regional and national level.

“Together we can make sure that all parents and carers, regardless of their child’s needs, have access to the advice and support they need to better succeed in life.”

How Contact supports parent carer forums

Contact helps to empower 152 parent carer forums and their membership of over 97,000 parent carers across England, to influence local, regional and national services and legislation. Find out more about our parent participation work and parent carer forums.

About our information and advice service

Our national information and advice service includes our website, social media channels, telephone helpline and live chat. Last year our helpline-online advice provided advice to 10,644 families, with invaluable information on a range of issues including financial support and getting help for a child in school. Find out more about our helpline and online advice service.

We’re delighted to welcome renowned chef and restaurant owner, Clare Smyth MBE, as our new charity patron.

Clare is the first and only British female chef to achieve three Michelin stars in the UK. She is the owner of Core by Clare Smyth in London and Oncore by Clare Smyth in Sydney. In 2018, she catered for the private wedding reception for the Royal Wedding between Prince Harry and Meghan Markle.

Clare joins us as we start preparations for a prestigious fundraising gala dinner to be held at Mansion House in London later this year. She will be volunteering her skills as consultant chef.

Clare says: “I heard about Contact from a friend who works closely with them. I was impressed by the unique support they offer families with disabled children.

“The helpline and the family support services the charity provides are a lifeline for so many parents who care for a child with additional needs. More families than ever before have looked to Contact for advice and support during the pandemic. I’m really looking forward to helping make sure the charity continues the vital work it does.”

Contact’s CEO, Amanda Batten, says: “We are really excited to welcome Clare as our newest patron. We’re looking forward to working with her as part of the Contact family. The gala dinner we’re planning later this year is an important opportunity for us to raise much-needed funds so we can reach even more families caring for children with additional needs with our information, advice and support.

“Families we support have had an extremely difficult couple of years as they’ve cared for their child’s health and educational needs and shielded in the face of shrinking services. Raising money to make sure we can continue to be there has never been more important as the families we support start to recover from the overwhelming impact of Covid. Clare’s support as patron and with our planned fundraising dinner is invaluable!”

Read more about how we support families and find out how you can help us continue the work we do.

We know that environmental sustainability is important to our families, staff and supporters. So we are delighted to let you know that we are now Green Small Business Certified!

The certification recognises our new environmental policy and action plan and our overall commitment to improving the management of our environmental impact.

The certification runs until October next year, and we are busy implementing our action plan and gathering the evidence we need in order to maintain our Green Small Business certification beyond October 2022.

You can find out more on our environmental sustainability page.