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Carers Information Pack This pack is for carers – people looking after friends, relatives or neighbours who are frail or have a disability or illness, and for professionals who work with carers - please use and pass on this information to carers you meet in the course of your work. If you are caring for someone, you may need help, information and advice so that you can carry out your caring role and look after your own health and wellbeing as well. Many people don’t see themselves as ‘carers’ but caring is a demanding job and this pack contains details of many different services that can support you in this role. Every person’s caring situation is unique, so not all of the pack will be relevant to your needs. We have tried to make the pack as comprehensive as possible and it is updated regularly, so contact numbers and addresses should be correct. If you find otherwise please do let us know. Also if you have difficulty in finding what you are looking for, please ring us on 01903 528600 as we have access to more information than we could put in this pack. Where an entry does not apply to the whole area covered in this pack, we have tried to show the area that the entry does cover.
* Western Arun is covered by Carers Support Service Western, 60a North Street, Chichester PO19 1NB, tel: 01243 537011. ** Horsham is covered by Carers Support Service North & Mid Sussex, The Orchard, 1-2 Gleneagles Court, Brighton Road, Crawley, RH10 6AD, tel: 01293 657040. If you want to talk through your own situation in confidence, or get some more details about the services listed in this pack, then please contact us at:
Carers
Support Service (CSS), Worthing & District
Methold House, North Street, Worthing BN11 1DU. Other “starting points” for information and services are:
Your
local West Sussex County Council (Social Care) office
from 9.30am – 1pm and 2-4.30pm: or ICIS (Information 4 Life), Freephone 0800 859929 or your own doctor Acknowledgements and thanks to West Sussex County Council for funding the printing of the Carers Information Packs for the county and for the help of ICIS, local carers, workers in health, social care and voluntary organisations in updating the entries. Every caring situation is different and each of us deals with things in our own way. We each need to make sense of our experiences in a way that is right for us. Some people do have profound feelings such as anger, guilt and depression, and there may be days when you feel like this. Below are some of the tips and ideas that carers said have helped them feel much more in control when things have been difficult. ‘A carers group or meeting can be a good place to share your feelings with other carers who know what it’s like’ ‘Apply for benefits as soon as you can. Many can’t be backdated so timing is important’ ‘Ask for help and take time off when you can’ ‘Ask Social Services for a Carers Assessment. Talking through my situation with a social worker identified that we needed more help and this was arranged for us’ ‘Don’t feel guilty if you feel angry and frustrated, but try and find a way of letting your anger out that doesn’t involve the person you care for’ ‘Don’t shut people out or pretend you can cope on your own. People won’t know you need help unless you say so’ ‘Don’t take no for an answer – ask and keep on asking if necessary’ ‘Family often don’t realise just how much you are doing – try and get them to share the load’ ‘Find a way of dealing with stress that works for you – perhaps having a massage, going for a walk, finding the time for a hobby’ ‘I found it really helpful to have a regular time to go swimming every week, the exercise helped with the stress and I had something to look forward to, just for me’ ‘If you feel stressed, don’t bottle it up – talk to someone’ ‘If you go on the Carers Register at your GP practice, they should know you are likely to be under pressure at times and can tell you about the advice and support that is available’ ‘If you hesitate to leave the person you care for, think about whether they might need time to themselves too’ ‘If you need to talk to someone, or have a good cry, then do it. There are so many organisations willing to listen’ ‘People often want to help but don’t know what you need – it’s up to you to turn that offer into something definite or practical’ ‘Try and do at least one thing you enjoy, for an hour each week’ ‘Try and get enough sleep, it’s much easier to manage when you’re not feeling tired all the time’
This section lists organisations which can provide advice and/or information. Please see other sections of this pack for information on specific topics. AGE CONCERN WEST SUSSEX Offers information on welfare benefits, residential and nursing care, retirement housing, older people's clubs, Age Concern day centres, help with benefit forms via home or hospital visits, access to Dept for Work and Pensions advice, advocacy for older people with diagnosed mental health conditions countywide and access to Age Concern insurance products. www.acwestsussex.org ALZHEIMERS SOCIETY Provides information, support and advice to people with Alzheimer’s disease and other forms of dementia and their families, including advocacy for the cared-for person. Can provide relief care assistants who visit families at home giving carers a break for 3-4 hours once or twice a week, at a modest charge. Carers group meetings are held (see section 5 Carers Groups, for details). Runs the Centre Club on Tuesdays - a social day club for younger people under 65 diagnosed with dementia, and for younger people with dementia there is Alz Café, a fun evening of music, good food and guest speakers. www.alzheimers.org.uk/Worthing ALZHEIMERS SOCIETY LGBT CARERS The Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender (LGBT) Carers is a telephone support service for anyone who is lesbian, gay, bisexual or transgender and who is, or who has been, caring for someone with dementia. www.alzheimers.org.uk/GayCarers CARERS UK Carers UK is a campaigning organisation providing information and advice on all aspects of caring to both carers and professionals. Has a UK-wide network of offices, branches and individuals to offer support to carers and provide vital feedback on local practices and policies towards carers. www.carersuk.org CITIZENS ADVICE BUREAU (CAB) Provides a free, independent, unbiased, confidential advice service on a wide range of subjects including benefits entitlement, debt, housing, employment and consumer queries, legal problems, immigration and discrimination. www.citizensadvice.org.uk DISABILITY LAW SERVICE (DLS) The Disability Law Service offers free, confidential legal advice to disabled adults, their families and carers. DLS also provides factsheets on its website. www.dls.org.uk ETHNIC MINORITY HELPLINE Offers help and support to disadvantaged individuals and groups in ethnic minority communities. Can liaise, give advice and write to relevant authorities on behalf of clients and put people in touch with the right contact. Can also help to fill in benefit forms and other forms for statutory agencies. Provides information on West Sussex County Council services in Gujerati, Hindi, Punjabi, Urdu and can arrange for interpretation or translation. HELP THE AGED Help the Aged works with older people campaigning, researching and developing practical solutions in all areas of their lives. SeniorLine is a freephone information service for older people, open weekdays 9am-4pm, offering advice on welfare, disability benefits, finance, housing, care in the community, safety, access to health services, etc. Care fees advice with NHFA Ltd is available weekdays, 9am-5pm. Free factsheets are available. www.helptheaged.org.uk HELP POINTS A single point of contact for any enquiry by the public about any local government or health authority service in West Sussex. ICIS (Information for life) Helps people who have a difficulty, disability or illness to find services offering help on all aspects of daily living. ICIS maintains the West Sussex Carers Online website and administers the West Sussex Carers Emergency Alert Card scheme. http://www.icis-info4life.org.uk/ www.westsussexcarers.org.uk INDEPENDENT LIVING ASSOCIATION (ILA) The ILA provides a range of services to disabled people, including support for people receiving Direct Payments and an advocacy service (Advocacy for Independence) for people with disabilities and their carers. Examples include writing a letter or making a phone call on your behalf, making a complaint, and attending meetings with your social worker or other professionals. They can also help with recruitment and management of personal assistants where a Direct Payment is made by West Sussex County Council. www.ilawestsussex.org INFORMATION SHOP FOR YOUNG PEOPLE Free, confidential information and advice for young people aged 13 – 25 years, on a variety of issues including housing, benefits, legal rights, health, unemployment etc. General counselling is also available, along with help with CVs, job applications, internet access, and sexual health service including pregnancy testing. LIBRARY SERVICES IN WEST SUSSEX Each library has an Information Centre staffed by a professional librarian who can help with a large variety of queries. www.westsussex.gov.uk M-CAS (Macmillan and Citizens Advice Service for the West Sussex Coastal Area) If you or a family member have been affected by cancer, this service offers advice on debt, money problems, benefits entitlements, personal problems, housing, employment and many other issues. WEST SUSSEX COUNTY COUNCIL HELP DESKS Help Desks are the initial point of contact in respect of Social Care. Trained advisers will tell you what is available through West Sussex County Council and will also give you information about other care services in your area. The Help Desks are open 9.30am-1pm and 2pm-4.30pm. WEST SUSSEX CARERS ONLINE WEBSITE This comprehensive website for carers in West Sussex is managed by ICIS and aims to help put carers in touch with local support and services, direct carers to national information which may be useful and give support in every way it can. www.westsussexcarers.org.uk WEST SUSSEX COUNTY COUNCIL HELPLINE Provides a 24 hour helpline offering information on any matter concerning County Council, District or Town Councils in West Sussex. www.westsussex.gov.uk
2 ALCOHOL AND DRUG RELATED PROBLEMS ADDACTION The local Addaction service offers free, open access for adults with drug or alcohol problems, and offers assessments, onward referral eg to Options, brief counselling, needle exchange, group work, ear acupuncture, advice and information. www.addaction.org.uk AL-ANON FAMILY GROUPS Offers understanding and support for families and friends of problem drinkers and can provide information about local support groups. Alateen, (same telephone number – part of Al-Anon), is for young people aged 12-20 who have been affected by someone else’s drinking. www.al-anonuk.org.uk ALCOHOLICS ANONYMOUS Provides a 24 hour helpline offering support, information and advice for anyone affected by an addiction to alcohol. www.alcoholics-anonymous.org.uk COMMUNITIES AGAINST DRUGS (ADUR) Offer support/referral to residents of Adur where problems with drugs or alcohol are affecting their family or community. Support group meets monthly for friends and families of drug and alcohol users. Area: Adur only. CRI TEVILLE ROAD DAY PROGRAMME Community based day care treatment programme to provide flexible, structured and individualised support for people aiming to live drug and alcohol free lives. Operates a groupwork programme that incorporates key working and individualised care plans and includes links to education, training and employment opportunities. Priority given to people in Worthing catchment area, but will cater for clients from bordering rural areas. FAMILIES ANONYMOUS Offers support through a helpline and self-help groups to families and friends of those with a drug or drug-related behaviour problem. www.famanon.org.uk FRANK Website and helpline available 24 hours a day for free and confidential drugs information and advice for young people, their parents and friends. www.talktofrank.com PLEAD – PARENTS LEARNING ABOUT DRUGS This is a group of concerned parents who have been trained to educate and equip other parents to avoid drug related problems in their families. Provide support and advice and give talks. Area covered: Chanctonbury only. SUSSEX ALCOHOL AND SUBSTANCE USE SERVICES (SASS) This service aims to minimise the misuse of alcohol and other substances and thereby reduce the harm to the individual and the community. Offers one to one confidential counselling for anyone concerned about their own drinking or someone else's. WEST SUSSEX DRUG AND ALCOHOL ACTION TEAM (including Families and Friends Project) The West Sussex Drug and Alcohol Action Team provides support and information to families and friends affected by someone else’s drug and/or alcohol use via: · Telephone helpline open 10am to 10pm 7 days a week · Regular drop in services in Worthing and Horsham on Tuesday early evening and Bognor on Thursday lunchtimes · A support group in Southwick on the 1st Thursday of the month 7.30pm - 9pm. · Individual meetings · Residential breaks eg access to Clouds (retreat centre for families and carers in Wilts.) WEST SUSSEX YOUNG PERSONS SUBSTANCE MISUSE SERVICE Offers treatment and support to 10-19 yr olds in West Sussex with serious drug and alcohol problems, providing confidential, individual support and counselling. Also offers advice for parents/carers.
People who have an illness or disability, carers and/or people on a low income may be entitled to a range of benefits. The regulations on benefits are complex and change regularly so it is best to seek advice. Your local Citizens Advice Bureau can give confidential, free, independent, impartial advice on benefits, entitlements, money problems and debt counselling. If you are over 50 Age Concern can advise, or if you are over 60 you can contact your Local Pension Service.
BENEFITS
Entitlement to benefit is based on various criteria eg National Insurance
contribution record, current income, savings, how a disability affects you or
the person you care for, and your individual personal circumstances. BENEFIT CRITERIA · Attendance Allowance (AA) – this is a non-means tested benefit payable to people over 65 who have needed help to look after themselves for at least the last 6 months, because of a long term illness or disability. The '6 months' rule is waived if the person is terminally ill. · Carers Allowance – If you are caring for someone at least 35 hrs a week and are not earning more than a certain amount per week you may be entitled to this allowance. The person you are caring for must be receiving an appropriate benefit at a certain rate. · Disability Living Allowance (DLA) – this benefit is for people under 65 who have needed help with looking after themselves and/or help with getting around for at least the last 3 months, and expect to need that help for at least the next 6 months. · Help with NHS costs – if you or your partner is on Income Support or on a low income with little savings, you may be eligible for financial help with various NHS costs, including dental treatment, prescriptions, sight tests, wigs and hospital travel costs. NHS Direct can tell you more. · Housing Benefit and/or Council Tax Benefit – assistance is available towards rent and/or council tax costs for people on a low income and with limited capital. For more information, get in touch with your local council, Jobcentre Plus, Jobcentre or social security office or The Pension Service. · Income Support – this is a means tested benefit for people on a low income and with limited savings. Receipt of Income Support can automatically entitle people to additional benefits, including help with NHS costs. · Pension Credit - Pension Credit guarantees everyone living in the UK aged 60 and over a minimum income, and may be able to award extra benefit to people over 65 who have made modest provision for retirement, eg through savings or occupational/private pension. To see if you qualify, go to the website www.thepensionservice.gov.uk CITIZENS ADVICE BUREAU (CAB) A full entry for this service is in Section 1 ‘Advice and Information’. CIVIL SERVICE BENEVOLENT FUND The service exists to help serving, retired and former Civil Servants (and staff of certain associated organisations) and their dependants. Assistance may include non-repayable grants, or repayable grants. Also provides information, advice and support in finding suitable short, medium and long term residential or nursing care options. www.csbf.org.uk HORSHAM COMMUNITY DEBT ADVICE SERVICE Offers a free and confidential debt advice service, without liability, to members of the public who have financial problems. Is able to negotiate with creditors on client's behalf. Area covered: Chanctonbury unless you are willing to travel to Horsham. INDEPENDENT LIVING FUND This Government funded trust helps severely disabled people live independently in the community. Discretionary grants are available to cover extra personal and domestic care costs incurred on top of local authority (Social Care) provision, but are subject to financial and other assessment/criteria. www.ilf.org.uk INLAND REVENUE The Inland Revenue has leaflets about tax allowances for people who are elderly, registered blind or have a disability. All Inland Revenue offices have a free home visiting scheme to help people with form filling if they cannot travel to a tax office themselves. PENSION SERVICE INFORMATION POINTS If you are over 60 and need help and information on benefits, the Pensions Service runs regular ‘surgeries’ around the area. It may be possible for the Pension Service to make a home visit if you prefer this to speaking on the phone. PRINCESS ROYAL TRUST FOR CARERS GRANTS As a member of Princess Royal Trust for Carers network of carers centres, CSS, Worthing and District can make an application for funds to contribute towards:
SSAFA/FORCES HELP The Soldiers, Sailors, Airmen and Families Association/Forces Help, provides practical or financial support to ex-servicemen and women and their families. www.ssafa.org.uk
When someone dies there are many decisions and arrangements to be made, at a time of great personal distress. Practical advice and support may be provided by friends, family, doctor, nurse, solicitor, minister of religion or anyone involved with you or the person who has died. The Funeral Director can also explain about arrangements that have to be made. Citizens Advice Bureaux can provide confidential, independent advice and information on all aspects of the situation. You may feel you want to talk to someone who is outside your immediate family or with other people who have been through a similar experience, and there are a number of organisations that offer a listening ear or counselling service and others deal especially with people who have been bereaved. AGE CONCERN – WEST SUSSEX Publishes free fact sheets including one with information about arranging a funeral, financial help and how to register a death. www.acwestsussex.org BRITISH HUMANIST ASSOCIATION Can provide information about arranging non religious funerals. www.humanism.org.uk CARERS SUPPORT SERVICE Can provide useful contact information following a death, and a listening ear. Can also give details of organisations which offer bereavement counselling. Tel: 01903 528600. www.carerswsx.org.uk CHURCHES AND FAITH GROUPS Many churches and faith groups offer support to people who are bereaved even if they are not members of their community. Contact details can be found in the Yellow Pages. COMPASSIONATE FRIENDS This organisation supports parents, grandparents and siblings after the death of a child, of any age. Services include support groups, newsletter, one-to-one support, befriending, literature/information, residential weekend, postal library and a helpline. www.tcf.org.uk CRUSE BEREAVEMENT CARE Offers free and confidential bereavement counselling for all those bereaved, and social meetings locally on Tuesdays and Thursdays. www.crusebereavementcare.org.uk FUNERAL COSTS You can only get help with the cost of a funeral if it appears reasonable for you to accept responsibility for the funeral arrangements and cost. To possibly be eligible for a payment from the Social Fund you must be in receipt of a qualifying benefit. For further information contact the Jobcentre Plus network/Pension Service and/or see their Booklet D49 ‘What to do after a death’. (see section 3 Benefits and Money Matters). LESBIAN AND GAY BEREAVEMENT PROJECT Offers support for anyone affected by the death of a lesbian or gay man. REGISTERING A DEATH The death of a family member or close friend is distressing and the formalities that need to be followed after that death can prove very stressful. Normally a death is registered within 5 days, in the registration district where the death took place. The certificates and documents are issued to you at the time of the registration. If you are unable to register at that office, you may attest the death by declaration at any register office in England and Wales. The information you give will be sent to the district where the death occurred, and when they have registered the death in their register, they will send you the certificates and forms you request. Please be advised that this could take up to a week. A 'qualified' informant is needed to register a death. Normally this means a relative of the deceased, but if there are no relatives, then it is possible for other persons to register:
You will be asked by the Registrar for the following information concerning the deceased:
It may be a good idea to look out some documentation for the deceased if you are unsure of any of the above, such as birth certificate, marriage certificate (if applicable) and NHS medical card. When the death has been entered in the register by the Registrar, you will be issued with two certificates which are free of charge. These certificates can only be used for specific purposes:
Certified copies of the death certificate are available at the time of registration for a small fee. You may need these for insurance or probate purposes. The Registrar may be able to advise you how many you will need. www.westsussex.gov.uk
Carers groups meet regularly and offer the chance to talk with other people who may have experienced feelings and situations similar to your own, social activities, information and some may also be involved in campaigning or other action. Some groups are for any carers in the local area and others focus on a particular illness, condition or disability. ADULTS AND AUTISM An informal support group for carers of adults with autism to exchange information and advice about communicating with adults with autism and share problems with others. Meetings are held in Littlehampton. ALZHEIMERS SOCIETY CARERS GROUP This group meets every 3rd Wednesday of the month from 2pm – 4pm in Worthing. Help with transport and/or alternative care can be provided. Carers groups are also held in Rustington, on the 1st Monday of each month (not bank holidays) from 4pm – 6pm and in Shoreham on the 3rd Monday each month from 4pm – 6pm. Alternative care can be provided. BRITISH EPILEPSY ASSOCIATION This branch covers a large area of West Sussex and has library of books, pamphlets and videos, information on consultants and hospitals specialising in the treatment of epilepsy, and regular meetings. BUTTERFLIES BREAST CANCER SUPPORT GROUP This group for patients, family and friends meets on the 2nd Tuesday of every 2nd month in Worthing between 7pm and 9pm. CARERS GROUP The Carers Group aims to provide information and support to carers of people who use mental health services in the area. The group offers the chance to meet and talk with other carers, find out more about local services, share information about mental health issues and hear speakers on mental health topics. The group meets on the second Monday of the month (not Bank Holidays) from 6.30 – 8.30 pm in Worthing. DISABLINK Support group for CARD team clients, and their carers meets once a month in Worthing. Area covered: Adur, Arun and Worthing only. FRIENDSHIP GROUP Offers support for people and families with cancer. Informal group meetings held once a month at different venues. Social evenings held 1st Tuesday of each month in, Worthing from 8pm. HEADWAY IN WEST SUSSEX Offers information, support and advocacy to people with an acquired brain injury, their family and concerned professionals. Local carers group meets in Tarring on 2nd Wednesday of each month from 6pm – 8pm. www.headway-in-west-sussex.org.uk HUNTINGTONS DISEASE ASSOCIATION Local monthly support meetings are held in Lewes, for sufferers, carers and ‘those at risk’, in East and West Sussex. www.hda.org.uk LEUCAN This is a self help/support group for parents of children with leukaemia or other forms of cancer. It offers friendship, support, advice, coffee mornings, organised outings and possible financial help. MALE CARERS GROUP This group specifically run for male carers, has been set up by CSS, Worthing & District, as male carers can feel that there aren’t many opportunities for them to talk in a male environment about their caring situation. Phone 01903 528600 for more information. www.carerswsx.org.uk MENTAL HEALTH CARERS GROUP This group for carers of people with mental health difficulties is run by CSS, Worthing & District. Sessions may include the chance to talk with other carers, hear relevant speakers, and enjoy outings. Phone 01903 528600. www.carerswsx.org.uk MOTOR NEURONE DISEASE ASSOCIATION Local support group offers advice, support and information and specialised equipment for local people with Motor Neurone Disease. Meetings take place on the 4th Monday each month in Rustington at 7.30pm. www.mnda.org.uk MULTIPLE SCLEROSIS CARERS GROUP This group for carers of people with Multiple Sclerosis meets monthly on Mondays at 2pm. Please phone for details of venue. Saturday Group for carers and people with MS, meets monthly (except January) in Worthing. Outdoor activities and outings in the summer. Beach Group meet 3rd Wednesday except July and August. Covers area between Shoreham and Littlehampton and north to Storrington, Pulborough and Steyning. PARKINSONS DISEASE SOCIETY Support group offers social contact and information for people with Parkinson's Disease and their carers. Meets last Saturday in the month 10.30am-3pm, for outings, holidays, newsletters, exercise and craft group. Arranges indoor bowls at Adur Indoor Bowling Club, Southwick offering personal support and help to people with physical disabilities; Monday 1pm - 2.30pm in summer; and Wednesday 1.15pm - 2.30pm, in winter. www.parkinsons.org.uk REMEMBER - THE CHRONIC FATIGUE SOCIETY (WEST SUSSEX ME/CFS SUPPORT GROUP) Support, advice and information for people of all ages in Sussex with ME / Chronic Fatigue Syndrome. www.remembercfs.org.uk RETHINK Provides advice, information and mutual support for sufferers from schizophrenia and other severe mental illness and their carers, and details of local support groups. www.rethink.org and www.rethinkcarers.org SPEAKABILITY For people with dysphasia and carers of people with communication difficulties following a stroke, head injury or brain tumour. Group meets on the second and last Wednesday of each month in Worthing. www.speakability.org.uk SPHERES OF THE RAINBOW GROUP This group is for people who suffer from a life-limiting condition, their families and friends. The aim of the group is to meet others, have fun and work together to improve services for all who have life limiting conditions. Can offer benefits advice, advocacy, speakers etc. Meets 3rd Thursday 2 – 4 pm in Worthing. STROKE ASSOCIATION FAMILY & CARER SUPPORT Provides information, advice and emotional support to people suffering from strokes and their families. STROKE SUPPORT GROUPS · Adur Stroke Club - Offers companionship, social activities and rehabilitation for members. Meets on Fridays from 2- 4pm in Southwick. · Worthing & District Stroke Group (Kestro) - Meet every Friday between 2pm and 4pm in Worthing. Provides social and remedial activities for people recovering from a stroke. SUPPORT GROUP FOR CARERS OF PEOPLE WITH EATING DISORDERS Monthly support group in Worthing for carers of people with eating disorders. SUSSEX ADHD SUPPORT GROUP Provides information, advice and support for people affected by Attention Deficit Hyperactivity Disorder. www.sussexadhd.org.uk SUSSEX AUTISTIC SOCIETY Local parent support groups and Asperger support groups run in East and West Sussex. The aim of these groups is to provide an informal opportunity to exchange information, ideas and news and give an opportunity for parents to meet each other. Children are welcome, but parents will be responsible for them. Operate family sessions for autistic children and their siblings on two Saturdays a month in Rustington. www.sussexautisticsociety.org SUSSEX LUPUS GROUP Aims to provide information and support to people with Lupus. WORTHING AND DISTRICT SCOPE A local charity that offers support and services to adults and children with cerebral palsy and similar disabilities, their families, carers and friends. www.worthingscope.org.uk WORTHING DIABETIC CLUB Support group which enables people with diabetes and carers to meet for talks and social events. Meets on the 1st Monday in each month, except January, July and August, in Worthing.
Services for children with special needs are offered by a number of organisations including the NHS, West Sussex County Council, Education Services and voluntary organisations. Information under West Sussex County Council (Social Care), Health Services and Learning Difficulties in this pack may also be of help. ICIS 0800 859929 can provide specialised information. ADUR SPECIAL NEEDS PROJECT (ASP) For up to 40 children and young people aged 5 - 23 with special needs in West and East Sussex. Runs a summer playscheme and the Glebelands Weekend Respite Project which takes place every 2nd and 4th weekend of the month. There are also opportunities for young people aged 13 upwards to become involved by acting as helper/partners for which some workshop training is provided. Club every Wednesday for young people with special needs aged 18 and over who live between Worthing, Brighton and Steyning. Club every Tuesday (interactive with Lancing Youth Centre) for young people with special needs aged 5 - 23. Club every Thursday for young people with special needs aged 13 and over. Runs from the Old School House, Shoreham. Has a regular newsletter. www.adurspecialneedsproject.co.uk ASHDOWN CLUB FOR CHILDREN WITH SPECIAL NEEDS Based at 6-8 Ashdown Road, the Ashdown Club offers a safe and stimulating environment for children with a wide range of special needs, both physical and behavioural, providing play and fun while being supervised. The club runs on Saturdays and 20 school holiday sessions. There is a youth club aimed at children aged 12 to 18 which runs on Wednesday evenings and occasional sessions for siblings. www.guildcare.org CAMELIA BOTNAR CHILDRENS CENTRE Based at Wellesley Avenue, Goring-by-Sea, Worthing, this is a purpose built independent pre-school play centre for children with special needs, open Mon – Fri 50 weeks of the year. CHALLENGING BEHAVIOUR FOUNDATION Offers information and support to parents, carers and professionals of people with severe learning difficulties that present challenging behaviour. www.thecbf.org.uk CHANCTONBURY COMMUNITY PLAYSCHEME Provides a summer play scheme for children aged 2 – 19 years with learning difficulties (must attend SLD or MLD school). Activities such as horse riding, swimming, sailing, ten pin bowling and visits to farms, wildlife centres and zoos. Transport can be provided. CHESTNUT TREE HOUSE CHILDRENS HOSPICE & COMMUNITY TEAM Children’s hospice for children and young people from 0 -19 years of age with progressive life-limiting and life threatening illnesses. Offers respite care, crisis care, day care, end of life care and bereavement support for children and adults. www.chestnut-tree-house.org.uk CHILD DISABILITY TEAMS (NORTH AND SOUTH) Teams set up by West Sussex County Council (Children and Young People’s Services) to meet the needs of severely disabled children and their families. Includes a sitting service for children with disabilities in their own home, providing a break for parents and carers - for an initial referral to the service contact your local Helpdesk. www.westsussex.gov.uk CONTACT A FAMILY National charity for any parent or professional involved with or caring for a child with any special need or rare disorder. Services include putting families in touch with support groups for specific medical conditions as well as linking individual families affected by rare disorders. Has large amount of information and network of local parent support groups. www.cafamily.org.uk DREAMS COME TRUE Nationwide charity whose aim is to lift the spirits of seriously and terminally ill children (aged 2 - 21 years inclusive), by enabling them to fulfil their most treasured dreams. www.dctc.org.uk EDUCATION Many children will have special educational needs of some kind at some time during their education. Schools and other organisations can help most children overcome the barriers their difficulties present quickly and easily. But a few children will need extra help for some or all of their time in school. For example they may have difficulties with: · All of the work in school · Reading, writing, number work or understanding information · Expressing themselves or understanding what others are saying · Making friends or relating to adults · Behaving properly in school · Organising themselves · Some kind of sensory or physical need which may affect them in school Further information can be found in the booklet ‘Special Educational Needs, a Guide for Parents’. The booklet is also available in languages other than English. To obtain a copy contact the Parent Partnership Service or direct from DfES Publications Centre, website: www.dfes.gov.uk FAMILY FUND Helps families of severely disabled or seriously ill children with grants related to the care of the child including holidays, leisure, laundry equipment, driving lessons and more. Aims to help all families with an income of £23,000 pa or less. www.familyfund.org.uk IPSEA (INDEPENDENT PANEL FOR SPECIAL EDUCATION ADVICE) Offers free and independent advice and support on education matters for parents of children with special educational needs. www.ipsea.org.uk LEISURE ACTIVITIES FOR PEOPLE WITH SPECIAL NEEDS ICIS hold comprehensive up to date information and contact details of clubs and leisure activities available throughout the county for adults and children. www.icis-info4life.org.uk LITTLEHAMPTON PEER SUPPORT PROJECT Provides volunteers to help families with children aged 5-13 facing mild mental health issues, including: family issues, general behavioural problems, bullying, sleep difficulties, mild depression, bereavement. Families must be referred by The Hub, Littlehampton. LOOK Look Sussex is a charity providing information and support for families in East & West Sussex who have a child or young adult with a visual impairment. PARENTS MAKE YOURSELVES HEARD FORUM Forum for discussion of issues affecting children with disabilities and learning difficulties in West Sussex. It is an opportunity to be involved in decisions about services, share experiences with other parents and a voice to ensure children with additional needs are fully included in society. It cannot offer advice and support on an individual basis. Meets at least every 3 months. wsgfl.westsussex.gov.uk PARENT PARTNERSHIP SERVICE – WEST SUSSEX Service for parents and carers of children with special educational needs. Can provide advice and information on educational issues, has a Parental Supporter Scheme for parents and carers in need of assistance and support when aspects of their child’s special educational needs are being discussed or assessed. Produces a termly newsletter, arranges information events for parents and carers, and works with voluntary networks and service providers to promote greater understanding and working together in respect of special educational needs. http://wsgfl.westsussex.gov.uk/pp PHAB SUSSEX Aims to promote and encourage adults and children with and without physical disabilities to come together on equal terms, to achieve complete integration within the wider community, mainly through Junior and Senior clubs and projects. PORTAGE SERVICE – WORTHING Home visiting educational service for families with pre- school children who have additional support needs. REACH - THE ASSOCIATION FOR CHILDREN WITH HAND OR ARM DEFICIENCY Parent support group, providing contact with other families with similar problems. www.reach.org.uk SEARCH LTD Charity providing respite care and support to parents of children with disabilities in their own home. Care is provided for children aged up to 19 with varying disabilities and behavioural problems. Covers the area from Portsmouth to Brighton and north to Crawley and surrounding areas. SITTING SERVICE Sitting service for children with disabilities in their own home, in order to offer a break for parents and carers. Referral is via West Sussex County Council helpdesk. SUSSEX AUTISTIC SOCIETY For support, membership advice and information about autism for families in East and West Sussex. The society offers an outreach respite care service. Local parent support groups and Asperger support groups run in East and West Sussex. The aim of these groups is to provide an informal opportunity to exchange information, ideas and news and give an opportunity for parents to meet each other. Children are welcome, but parents will be responsible for them. West Sussex Parent Action Group Transition 18+/Adults with autism – meets every other month in Littlehampton. Sussex Autistic Society - Southdowns Family Centre in Rustington, provides a friendly and welcoming place for families to meet, where support and advice is offered. Family sessions for autistic children and their siblings operate on two Saturdays a month which include drama, art, play, cookery, computing, sport and a multisensory and music environment to encourage sensory awareness, interaction, and confidence. www.sussexautisticsociety.org SUSSEX ADHD SUPPORT GROUP Support group for people with or caring for someone with ADHD (Attention Deficit Hyperactivity Disorder) with persistent difficulties in attention span, poor impulsive control or hyperactivity. www.sussexadhd.org.uk SYNDROMES WITHOUT A NAME (SWAN) Helps to find support for children and adults who have undiagnosed or unnamed conditions. Collect information about such conditions and puts families in touch with others in similar situations. www.undiagnosed.org.uk WELLSPRING WEST SUSSEX This registered charity is for children and young people with disabilities and special needs, and their parents and carers in West Sussex. A free, quarterly newsletter is produced providing information about local and national services, leisure opportunities and articles focusing on issues of interest. www.wellspringwestsussex.org.uk WEST SUSSEX CHILDRENS INFORMATION SERVICE This covers:
WHERE DO I GO FROM HERE? This free guide for parents, produced to assist parents find out what services are available and who can help, is available from West Sussex County Council (social care). WORTHING AND DISTRICT SCOPE A local charity that offers support and services to adults and children with cerebral palsy and their carers. www.worthingscope.org.uk YOUNG MINDS National charity committed to improving the mental health of all babies, children and young people. Services include the Parents' Information Service helpline for anyone with concerns about the mental health of a child or young person, YoungMinds Consultancy and YoungMinds seminars and training. Produces information leaflets and booklets for young people, parents and professionals and publishes a magazine. www.youngminds.org.uk
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