A Guide To Our Family Services For Disabled Children

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1 Caudwell Children A Guide To Our Family Services For Disabled Children Supported by caudwellchildren caudwellchildren.com caudwellkids

2 How We Can Help You may be reading this information because a child you know has a disability or complex health condition. It may be that they are receiving treatment, are undergoing tests to find a diagnosis or you might be concerned that this child has an undiagnosed condition or disability. To help in these situations, Caudwell Children has a team of Family Support workers across the UK who provide a range of information and support services whatever a child s disability or medical condition. A disability might be genetic, a condition existing at birth, one that develops during the first month of life or the result of an illness or accident. Sometimes the cause may remain unknown. Caudwell Children provides a range of services which help to transform the lives of disabled children from birth until their 19th birthday. We work with health and social care professionals supporting work in the community and in hospital. Caudwell Children and Hampson Hughes Solicitors in partnership Caudwell Children and Hampson Hughes Solicitors are delighted to be working in partnership to provide essential services to help support families with disabled children across the UK. This booklet and the North West Family Support services Caudwell Children provide have been made possible by the amazing support provided by Hampson Hughes Solicitors Support to gain a diagnosis or at diagnosis When a child is diagnosed with a disability it is a different experience for every family and a very difficult time. Sometimes diagnosis can come as a shock, particularly if there were no complications in pregnancy or if your child had not been unwell. Other times, diagnosis may be the result of talking to your doctor about how your child is developing and an underlying cause has been identified. Some illnesses or disabilities can be difficult to diagnose and may take time or in other cases a definite diagnosis cannot be given. At Caudwell Children we understand how difficult this time can be. Getting support at an early stage can make a long term difference to your child s future. We can offer not only practical and emotional support but also help you find reliable sources of information about your child s condition and the support that is available. This publication outlines the support that Caudwell Children and its partners can provide.

3 Family Support Parents often tell us that following diagnosis they need to have time to take in the information they have been given. Having received this news you may be frightened and anxious about the future. We understand that this is not the time to make decisions or to take in large amounts of information. We also understand that families will encounter many difficulties on their journey and will need support at different times throughout their child s life. Our Family Support teams are in every region of the UK helping families with a disabled child to cope with issues in their everyday lives; coming to terms with the disability or a life threatening condition; solving personal and family problems, such as inadequate housing, accessing specialist equipment, and helping address financial concerns. We recognise that disabled children and those with complex health needs must have access to the health care, adaptations, equipment and support they require. Our Family Support teams will visit you at home to help put in long term support for all your practical and emotional needs. This might include: Benefits information and access to specialist support Gaining access to health and social care services Equipment services Educational assessments Information about medical conditions including rare conditions Supporting families during diagnosis Housing Financial and debt information Respite services If your child has health or social care needs which require additional support we will work with you to ensure that you are gaining access to the services and help you need. Through our partnerships we also have extensive experience of accessing information and advice on your legal and statutory entitlements. To speak to one of our Family Support team call or apply online applyforsupport

4 Hospital Support Caudwell Children can also provide support to families at birth or following diagnosis. Time at hospital can affect everyone in your family. It can become like living in a bubble; you are often consumed by your child s condition, the time taken for hospital treatments, the decisions you have to make and what the future holds. Your everyday tasks and family lives are pushed to the side. Caudwell Children work in partnership with hospitals as well as health and social care professionals in local communities. We provide an emergency safety net giving support and information to you following diagnosis of a disability or hospitalisation. Our teams can provide invaluable support at specialist clinics, intensive care, oncology and general children s wards. This service provides you with critical support at a time of crisis. Having someone at appointments or on the ward can help you understand the medical language and the options which are available. We are here to listen to your worries and fears. We will be there for you after every appointment and will offer emotional support to help you make informed decisions. We can find sources of information about your child s condition and help you make contact with other parents. And we can provide you with practical help to get a break from your caring role during your child s stay in hospital. Our teams also provide invaluable support to help you make practical preparations for your child s return home after discharge. If you need support whilst your child is in hospital call or apply online applyforsupport

5 Equipment If your child has a disability, often they might need specialist equipment. Caudwell Children can help you find the information they need about equipment that can increase your child s independence and quality of life. Our Family Support teams will help you gain access to statutory equipment services and find voluntary sources of funding to provide equipment to meet your child s needs. Caudwell Children provide disabled children with powered wheelchairs, therapy tricycles, buggies, sensory equipment and car seats through an application process. To find out more about our equipment services visit www. caudwellchildren.com/coreservices Or if you need support to access information call or apply online com/applyforsupport Hampson Hughes Solicitors Rehabilitation Fund An alternative source of support may be the Hampson Hughes Rehabilitation Fund. The Firm is committed to the long term well-being of those who have suffered a catastrophic injury as a result of a non-fault accident or medical negligence. Their expert legal advisors can assist in ensuring you are receiving the benefits that you are entitled to. The Firm also works tirelessly to ensure compensation is awarded to those affected. They will visit you at home or in hospital to discuss your personal requirements and provide advice on the best options for the future. For those who have suffered a catastrophic injury, Hampson Hughes Solicitors Rehabilitation Fund could help to provide: Private specialised transport to and from medical appointments Access to specialist equipment Counselling, particularly coping strategies for the individuals and their families Home adaptations Pain management programmes

6 Accessing Therapies At Caudwell Children we understand the difficulties in finding information about therapies that could make a lasting difference to your child s health and wellbeing. We help you understand more about the range of therapies available as well as providing access to some specialist therapies. As well as helping families find information and make informed decisions about the range of available therapies, Caudwell Children provide individual therapy programmes designed to help children with Cerebral Palsy, acquired brain injury and Autism reach their full potential. Cerebral Palsy is caused by injury to the motor control centres of the brain, occurring during pregnancy, childbirth or infancy (up to and including around 3 years of age). Acquired brain injuries could have been caused as a result of an accident, illness or operation. Each of our programmes are individually designed to meet the needs of the child with either Cerebral Palsy or an acquired brain injury. They focus on strengthening muscles and on increasing mobility and movement. Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. Our Autism programme consists of a combination of therapies, education, diet and nutrition which aims to address communication, social interaction, challenging behaviours and hypersensitivity. All our therapy programmes provide guidance to parents to allow them to support the programme and deliver the therapy in the familiar and comfortable environment of the family home. For more information visit coreservices

7 Education Financial Support Caudwell Children can work with you and your education provider to consider whether additional support is required and assess any special educational needs. These needs could be one-to-one assistance, specialist teaching or therapy. All providers have a duty to make reasonable adjustments to make sure disabled students are not discriminated against. These changes could include: changes to physical features - for example, creating a ramp so that students can enter a classroom providing extra support and aids (such as specialist teachers or equipment) If you need help with education issues, including transition, our Family Support team can support you through the process. For more information visit coreservices Like many parents with a disabled child you might worry about how you are going to cope financially. You may feel that you need to give up work or decrease your hours so that you can spend more time caring for your child. If this is the case, it s worth finding out about the benefits you may be entitled to. To see what benefits you could be entitled to, use the Work and Pensions benefits advisor tool or phone the Benefit Enquiry Line on Caudwell Children can also help you to find expert advice, information and support about finances, benefits and debt issues. For more information visit coreservices

8 Short Breaks and Respite Sometimes following a long term illness or diagnosis children are often unable to attend school, missing out on both education and contact with their friends. At Caudwell Children we understand the importance of your child s need to have access to fun, inspiring and challenging leisure activities that build life skills and promote independence whilst providing you or their carer with vital short break respite. Throughout the year Caudwell Children provide accredited activity challenges with learning outcomes. We can provide mentors to help young disabled people identify their goals and build the skills and experience to allow them to reach their full potential. We help children to build friendships and form lasting social networks. We also work with partners across the UK to enable families to access local services which provide overnight respite or short break activities. For more information about our Short Break Activities call or to apply for support visit applyforsupport Other Caudwell Children Services Enable Sport If your child enjoys sport and wants to participate at competitive level Caudwell Children also help provide specialist equipment to help every child reach their sporting potential. For more information about our Enable Sport programme contact or visit coreservices Holidays and our Destination Dreams Programme Our Family Support team can supply information about accessible holidays and days out as well as sources of voluntary funding to provide financial support if you require a break. In addition Caudwell Children provides a fully supported holiday for children fighting life threatening conditions through our annual Destination Dreams programme. For more information contact or visit destinationdreams

9 Contact us on: caudwellchildren caudwellchildren.com caudwellkids Minton Hollins Building, Shelton Old Road, Stoke-on-Trent, ST4 7RY ISO 9001 Certified Quality Management System

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