Support Services

1. Support Services

2. Many parent carers caring for a child with additional needs are juggling lots of balls and dealing with complex issues. They often need support, both practical and emotional.

3. Information

4. Hampshire’s Local Offer • The Hampshire Local Offer website is designed to be the one place for you to find up to date Information about Services and Support for children and young people with Special Educational Needs and disability aged 0-25. • It includes: • Education and Childcare • Respite and Support • Equipment and therapies • Health • Leisure and play • https://fish.hants.gov.uk/kb5/hampshire/directory/home.page • The local offer is now part of a wider information website but there is a link to the local offer on the front page

5. Parent Voice Parent Voice is a network of parents and carers of children with disabilities in Hampshire providing a single point of contact for the information and advice you need for your child aged 0-19. Through Parent Voice, parents can share your experiences and benefit from the knowledge gained by other parents/carers. By working closely with Hampshire County Council, Parent Voice provides the first opportunity for families to have their say on how services can be shaped and developed to meet the needs of a growing number of children with disabilities in Hampshire. They will also keep parents informed of upcoming events and help them to find out what’s available locally for their child.

6. Services: Website www.parentvoice.info – signposting, event listings, fact sheets Weekly update emails – information on upcoming events ◦Workers who are local to you, developing networks and links to provide solutions to your individual queries ‘Independent supporters’ who can help parents with EHCPs

7. Social Care Info This is a new website to help find Social Care resources and Independent Advice Agencies Families with disabilities or illnesses, may be able to get help with your social care needs, including help from their local council. ‘Socialcareinfo’ is designed to help you find details of the support available to you locally; national information about your rights and entitlements; and details of independent advice organisations in your area who can help you get the help that you need. To access the website, click and insert your postcode. http://socialcareinfo.net/

8. Support with medications Many of our children take a lot of different medicines and the information they come with can be confusing. A website exists that covers many of the medicines that are prescribed or recommended to children by health professionals. It answers your questions about how and when to give the medicine, what to do if you forget to give the medicine or give it twice, and any possible side-effects. You can read or watch short films about giving different medicines forms, including tablets, capsules, liquid medicine, injections, suppositories and enemas, eye drops/ointment and ear drops http://www.medicinesforchildren.org.uk/

9. New Life Newlife Nurses man a helpline to help answer questions such as: • Who to contact • What a condition is • How to cope with a situation • Which professionals do what • What are the possibilities for support • What to do next • Who to ask to see • What benefits are available • What are a parent / child’s rights Also have a free condition information service is dedicated to inborn conditions (birth defects). Gives understandable, regularly updated key information for over 3,000 conditions. www.newlifecharity.co.uk0800 902 0095

10. Contact a Family Provide advice and support for families with disabled children. They offer: • A freephone helpline • Information booklets on a range of topics • A family support service • Volunteer parent representatives offering local support and information • A guide to condition specific support groups or one to one linking with other parents • Medical information on disabilities and rare disorders • A glossary of medical terms • A quartlerly magazine called Connected which contains news, resources and stories on families with disabled children • Cash Counts – one stop shop for benefits advice www.cafamily.org.uk 0808 808 3555

11. Early Support guide Early Support recognises the need for parents to look after themselves as well as their child and have produced a guide calle ‘Looking after yourself’ http://councilfordisabledchildren.org.uk/media/540275/earlysupportlooking-after-yourself-final.pdf

12. Support4Send Hampshire provided but independent support for parents with EHCP applications and attendance at meetings.

13. Practical support

14. The Short Breaks Offer This enables children and young people with disabilities and/or additional needs to join in with safe, fun and interesting activities whilst giving parents or full-time carers an opportunity to have a short break from caring. Short breaks come in all shapes and sizes, lasting from a few hours to a day or an evening, and provide a positive experience for all. They could: • be a fun short break activity just for your child • support families to enjoy a short break activity together • include additional support so that your child or young person can join a club or recreational activity in their community. e.g. swimming lessons with additional support Sensory4all Gateway Sessions, Eastleigh Cycles4all Sessions WiggleWaggle No Limits, Eastleigh

15. Short breaks are for children and young people who: • have a disability and/or additional needs and may require support to participate fully in leisure and recreation activities • are between 0 to 19 years old • live in Hampshire and/or attend a school in Hampshire (excluding Portsmouth, Southampton and the Isle of Wight as they have similar schemes). • Some activities and services have a cost which you would expect to pay whether a child is disabled or non-disabled - families are expected to pay these costs. The additional support you may require will be funded through the short breaks programme.

16. Places at an activity or play scheme can be booked directly with the provider if the child has a Gateway Card. This is used to identify that the child has a disability and/or additional needs and may require support. The card is free and will reduce the many funding forms that families have completed in the past at each activity. Find out more at https://www.hants.gov.uk/socialcareandhealth/childrenandfamilies/specialneeds/shortbreaks/gatewaycard The Hampshire Gateway website allows them to search online for leisure and recreation activities. The website is regularly updated by Parent Voice with new activities. https://fish.hants.gov.uk/kb5/hampshire/directory/results.page?familychannel=6-6&searchtype=event

17. Cerebra Cerebra have a postal lending library of books on topics relating to neurological conditions, media (DVDs) and sensory equipment, such as bubble tubes, fibre optics and the ever popular Sensory in a Suitcase, which contains a range of equipment to stimulate all the senses. Anyone in the UK (including NI) can borrow items from our library and it's free to return them by using our freepost address for books or a courier service that we arrange for you for sensory equipment. Families can borrow two books at a time and one sensory item for a month at a time. https://w3.cerebra.org.uk/help-and-information/library/

18. Cerebra Sleep Service Cerebra have a team of sleep practitioners who can offer help and advice on overcoming sleep problems such as anxiety at night and not being able to get to sleep, bedwetting, nightmares and repetitive movement disorders.  Mostly this is done though the post and over the phone but in some cases a sleep counsellor can come out and visit the family. https://w3.cerebra.org.uk/help-and-information/sleep-service/

19. Children’s Services Social services departments have a general duty under Section 17 (10) of the Children Act 1989 to safeguard and promote the interests of ‘children in need’. The law recognises disabled children as being in need. Section 17 (11) of the Children’s Act 1989 states that a child is disabled if they are blind, deaf, or non-verbal, or suffer from a `mental disorder of any kind’, or are `substantially and permanently handicapped by illness, injury or congenital deformity, or such other disability as may be prescribed’. A child in need is entitled to an assessment from the social services department. The assessment is the start of the process to decide if services are needed. It is an opportunity for parents to tell a professional about their child and family’s needs. An assessment is important because it can lead to a number of services being provided, like practical help in the home and short breaks. The maximum timeframe for any assessment is 45 working days from the date they get a referral. If a family needs help urgently, they can ask for services to be put in place straight away without waiting for the outcome of an assessment.

20. To make a referral: Disabled Children's Team, Hampshire County Council childrens.services@hants.gov.uk 0300 555 1384 They use the following statement and criteria to decide which children are eligible for specialist services: In order to achieve outcomes appropriate to their potential and as a result of their disability, the child requires total or substantial support, appropriate to their age, from another person, which is not available within the family network. The child should also meet one or more of the following criteria: •they use specialist equipment for mobility •they require support for all basic self care functions when no longer age appropriate •they need constant supervision throughout the day and for prolonged periods at night, when no longer age appropriate •they have behaviour as a result of disability that is a serious risk to self and or others, including self harm •they have communication needs which, without support, severely affects personal safety, i.e. is deaf, blind or without speech

21. •they have been assessed as having either of the following conditions, which results in significant risk of self harm or harm to others: •Profound and Multiple Learning Disability (PMLD) •Severe Learning Disability (SLD) and/or autism with challenging behaviour Other factors that will influence assessments •Carer has physical or mental health problems •Actual or potential risk to health or safety of carer •Carer suffers sleep deprivation on a regular basis due to needs of the disabled child through the night •Child’s behaviour is a serious risk to self or others •Child has been / or is the subject of a Child Protection Plan •Other person(s) with disabilities or long-term health needs in the household who needs support •Sole carer and has a limited support network •Significant pressures in the family such as domestic violence •Risk to the child because of the physical environment •Risk of the disabled child's care breaking down •Without support the child is likely to need a specialist residential or educational placement •The family has difficulties in meeting financial commitments

22. •There are stressful family relationships which may be harmful to disabled child •Impact on siblings eg, needs of other children in the family at risk Contact A Family suggest putting the request in writing and keeping a copy of the letter or email. The request doesn’t need to be detailed but should include: • name and address • details of who is in the household, including any other children • a brief description of the child’s disability • what kind of extra help the child needs • whether the family needs help urgently. They have a good guide called ‘Getting Social Care Services for your Disabled Child’ https://www.cafamily.org.uk/media/778843/getting_social_care_services_for_your_disabled_child_in_england.pdf

23. Holiday support School holidays often cause added pressure for our parents. There are a variety of local specialist play schemes who might be able to help: Lanterns Nursery School, Winchester – 2 – 5 year olds 4 weeks in the Summer plus some sessions at Easter and Christmas LUPS – play schemes for children aged 2 – 19 with profound/ multiple Learning and/or complex physical disabilities in Fareham Challengers - Eastleigh Play scheme for disabled and non-disabled children aged 4-12. http://disability-challengers.org/what-we-do/playschemes/eastleigh/ For some children a mainstream play scheme with additional support using their Gateway Card may be more appropriate.

24. Play schemes obviously incur a cost for parents. If this is a problem there has been some success in the past gaining funding: https://www.turn2us.org.uk/?_ga=2.215939103.989491404.1497954602-201083785.1497954602 The Respite Association They provide short term assistance in the funding of appropriately qualified respite care for disabled, sick, elderly or terminally ill persons in order that their regular carer can be allowed to take a much needed break. In addition they purchased a caravan at Skegness in 2012 in order to offer free respite breaks for carers. Many of the people who are at home caring for loved ones are forced to live on very limited incomes. It is these people that we are working to help. Whilst providing suitably qualified carers in the home or funding a temporary place in a residential care centre can be expensive, the benefits to the carer are beyond measure. The cost and level of support varies dramatically from a few pounds to several hundred with an average level of around £400. http://www.respiteassociation.org/

25. Muffins Dream Foundation The charity are dedicated to helping families who have a child or young adult with a disability or illness. The aim is to make sure the children never miss out on a normal upbringing by offering them a wide range of support services, both in the community and in the hospital environment as well as supporting their family members and close friends. They offer a wide range of services such as boredom buster bags, hospital visits, sibling services, birthday parties, one to one support and babysitting as well as tea parties and activity days where families can come along and just have fun with people who understand what they are going through. They also organize workshops which offer children and young adults a way to enjoy experiences they may not have had the chance to do normally, such as wheelchair dancing! We also run confidence workshops to help boost their self-esteem and accept that it’s ok to be different and be proud!

26. Muffin’s Dream Foundation can offer 1:1 support and a drop-in clinic for carers and parents of children with a disability or illness. They can sign post parents through available support ranging from financial, educational and health care support. By offering them long term support they will empower them to eventually make decisions regarding the well-being of their child with confidence and knowledge. Many parents after receiving a diagnosis for their child have felt lost in trying to access the information and support needed. This ranges from access to disability and carer’s allowance, understanding of an Education, Care and Health Plan, and comprehending which professional team provides specific needs for their child. The charity can support parents by offering 1:1 sessions in their home, so that they can discuss their concerns and help them devise an action place as well as directing them to available resources. Where necessary they can advocate on their behalf. http://www.muffinsdreamfoundation.org/

27. Emotional support

28. General SEN and condition specific support groups Local Parent Voice list lots of local support groups. I also hold a list of very local ones. www.parentvoice.info National There are also many national support groups. Many of these are listed in the Early Support booklet ‘Useful contacts and organisations’ Online support groups There are many support groups set up on Facebook that parents are finding useful.

29. Home Start Home-Start is a local charity which provides friendship and emotional and practical help to parents with at least one child under five years old. They visit families in their homes for a few hours each week during which time they provide both emotional and practical support. https://www.home-start.org.uk/find-your-nearest-home-start

30. KIDS KIDS offer a free befriending service offering one to one emotional support for parents of disabled children or those with additional needs. Parents meet a befriender who is a trained listener, there for them if they want to laugh, cry or simply let off steam about their day. All the befrienders are parents of disabled children, so they know better than most where you’re coming from. Befrienders can meet parents for around an hour in their home or somewhere else, just once or twice, or for a few months. Parents and befrienders decide what’s best for them . https://www.kids.org.uk/south-east-befriending Kim Steele 01329 24 2954 kim.steele@kids.org.uk

31. SCOPE Connect Families is a free online befriending service connecting parents of disabled children. It offers parents of a disabled child the chance to talk to another parent who knows what you are going through and shares your experiences. Parents can use this service even if their child has not been diagnosed. They will match the parent with another parent who will chat to them via Skype in the comfort of their own home. Each of our volunteers is a parent of a disabled child, trained to support the new parent through the often worrying, lonely and confusing experience. Parents will need a laptop, smartphone or tablet, internet connection and Skype They can chat just once or twice, or for a few months. They decide what’s best for them. https://www.scope.org.uk/support/services-directory/connect- families

32. Affinity Hub The website aims to provide a virtual home for parents to realise that they are not alone. The aim is to help families realise there are many other families also going through similar experiences and feeling similar complex emotions, thus hopefully reducing isolation. The Professional Support section lists organisations that provide emotional support as well as private counsellors, psychotherapists and psychologists that have experience of supporting this specific client group. It also includes quotes from other parents about their experiences and what advice they would give to parents, and a growing list of books and reference material that parents have found helpful. Much of this information is available online if a parent were to search for it but by bringing it all under one umbrella it will help parents and reduce the time spent looking. http://www.affinityhub.uk/1/Welcome.html