Carers handbook contents
- Getting started
- Self Help and Community Support
- Equipment and technology
- Money Matters
- Carer’s Health & Wellbeing
- Carers in Paid Employment
- Talking with Professionals
- Assessments – Asking for Help
- Care Providers and Care Costs
- Planning Ahead
- Children and Young People with Disabilities
- Young Carers and Young Adult Carers
Children and Young People with Disabilities
The Lighthouse Child Development Centre is a multi-disciplinary centre for children up to 16 years of age. Referrals can be made by your GP, paediatrician, health visitor or health worker. The team working at the centre include;
- consultant paediatricians,
- The Toy Library (a charity organisation),
- children with disabilities social care team,
- speech and language therapy and
- rehabilitation which is comprised of physiotherapy and occupational therapy.
Children referred to the service may have a range of difficulties ranging from
- long term conditions and disabilities
- delayed development of their independence, fine motor and gross motor skills
- have suffered a short term injury requiring treatment.
What the service provides
The service provides specialised outpatient care for those with significant delay in more than one area of development and have or are likely to require the support from more than one secondary agency, service or discipline.
For families requiring a multi-agency approach, there is an identified key worker and the Lighthouse Child Development Centre will work in partnership with colleagues in the community both locally and further afield.
A full description of the services available at the lighthouse centre can be found on the Southend NHS website
Planning for the Unexpected
It is helpful to prepare for the unexpected by thinking through what they want to happen if for example a parent /carer was unexpectedly admitted to hospital and replacement care for one or more children would need to organised quickly. Discussing this with family and friends in advance and creating a plan can bring ‘peace of mind’. It is advisable to create a record of key information that anyone providing replacement care needs, such as how to enter the home, important contact details, current medication, any allergies and also likes and dislikes, favourite things which bring comfort whether that be a favourite item or a piece of music for example. Also providing details of familiar routines can be helpful so that the person you care for feels safe and less anxious.
If you have a pet think about their care too, they may stay in the family home but maybe a friend will be willing to take responsibility for their care needs e.g. feeding, dog walking. On the other hand, there may be a friend or member of the extended family who can take the pet in temporarily.
It is advisable to keep this information in one place where it will be found easily. You may want to make a few copies to be kept in different places and/or by different people who support you with the caring role. See below for a suggestion of what should be included in your plan;
Name and contact details for;
- You and the person you care for
- Back up carer if there is one
- Next of kin
- GP, pharmacy and other health care professionals
- School contact details
- For additional children in the family
- Contact details of any other relatives who need to be informed
- Details of any additional people who children under 18 will need to stay with or who will come to stay with them
- School contact details name and contact details of school lead
- Medication the person you look after is taking and where it is stored, (this information needs to be frequently reviewed and updated)
- Details of any allergies
- Any ongoing treatment any care and support services they receive
- Any continence products needed and who supplies them
- Any mobility challenges and mobility aids such as a wheelchair or hoist
- Likes and dislikes, favourite things which bring comfort whether that be a favourite item, music or hobby for example.
- Provide details of familiar routines – helpful so that the person you care for feels safe and less anxious.
- Any triggers which people need to be aware of which negatively affect the person you care for
- How to access the property is there a key safe or give details of anyone who has a spare key
- Any key information about the person’s home, for example how to turn the central heating on
- any Power of Attorney, Deputyship or Guardianship that’s in place
- any advance care plan that has been made.
Long term or complex health condition – Emergency Healthcare plan
For some children and young people with a long term or complex health condition it is advisable to have an Emergency Healthcare Plan (EHP). This brief document provides key information about a child’s condition. In the event of a health emergency, having an Emergency Healthcare Plan can make communication easier and ensure that a child:
- is treated as promptly as possible
- receives the right treatment
- has the right experts involved in their care.
An Emergency Healthcare Plan is drawn up between parents and a healthcare professional. For more details please refer to the Council for Disabled Children; https://councilfordisabledchildren.org.uk/our-work/health-and-wellbeing/practice/emergency-healthcare-plans
The charity MedicAlert can provide jewellery engraved with your most vital medical information along with a unique membership number which is used by those caring for you to access your full record in an emergency.
In Case of Emergency (ICE)
ICE (In Case of Emergency) is a campaign started by a paramedic to help emergency staff quickly find who to contact. You can store the word ICE in your mobile phone address book with the number of the person you’d like people to contact, for example your back-up carer. If something happens to you, ambulance, police or hospital staff will look for the word ICE in your phone’s address book and call that person. If your phone has a lock with a password, you can put ICE information on your phone’s lock screen. Your phone instruction manual will have information about how to do this.
Another aspect to consider would be to ensure the young carer and the whole family know what to do if there is a fire at home. Most local fire and rescue services offer free of charge Home Fire Safety Checks. You may be eligible for free smoke alarms to be fitted where required. You will not be sold anything. For more information and to book your free home safety check contact the Essex County Fire & Rescue Service website or call 0300 303 0088. More details about equipment and technology to keep you safe can be found in this e-handbook in the section Equipment and Technology.
Some charities have provided templates or advice to help you keep a record of important information such as;
Carers UK have an interactive online tool to identify the information to include in your plan https://carersdigital.org/mybackup/
Southend University Hospital, Hospital Passport suitable for adults with learning difficulties,
Apps such as Carers UK ‘Jointly’ can also be used to keep all important information in one place and shared by the people within your ‘care circle’ https://jointlyapp.com/
The local authority social services may be able to advise you on how they would provide emergency care in the event of no other support being available.
Local Authority Support
What is SEND?
SEND stands for Special Education Needs and Disability.
A child or young person has special educational needs (SEN) if they need extra support because they find it harder to learn than the majority of other children or young people of the same age.
A child or young person has a disability if they have a physical or mental impairment that has a substantial or long term effect on their ability to carry out normal day to day activities.
Children and young people who have special educational needs (SEN) do not necessarily have a disability, and some disabled children and young people do not have special educational needs. There is a lot of overlap between the two groups though.
There are services and support available to families with children and young people with a special educational need or disability (SEND). Information on these services and activities has been collated and published by the local authority under the title Local Offer. Southend Council’s Local Offer is published on the Livewell Southend website . It includes information about childcare options which have specialist expertise to support children with a special educational need or disability.
The comprehensive details of activities and services available can be filtered by age group on the Local Offer website; Local Offer – Filter your search
It is a statutory requirement that this ‘Local Offer’ information be made available in a printed copy if required.
There are a variety of schemes to help provide respite for families who have children with additional needs.
The Specialist School Nurse team based at the Lighthouse Development Centre can give guidance on respite for children with disabilities Contact Specialist School Nurse Lead Lighthouse Development Centre Tel: 01702 507102, Mobile: 07779 289240
The Marvellous Minders scheme provides support for parents of children with additional needs. The scheme is aimed at finding a suitable childminder to allow parents and carers the chance to have a short break, return to work or access training while their child receives high quality care.
The scheme is co-ordinated through the Southend Early Years team by a Pacey Childminding Coordinator. They will support you to find a Childminder to suit your needs email: firstname.lastname@example.org
Details on Marvellous Minders including Choosing a Childminder : Top Tips can be found at
Respite may be available through the Short breaks scheme, Aiming High for Short Breaks and/or through Direct Payments these are all accessed through the local authority.
Children with Disabilities team 01702 507163 / 01702 215007
Aiming High for Short Breaks : one to one support from healthcare assistant to help access a holiday club or activity including an activity at home.
Direct Payments : money paid by Southend Borough Council to the parent or carer of a disabled child young person aged 16 or 17, so they can arrange and pay for their own support and services. You can buy any service you have been assessed as needing (with some exceptions). You could use Direct Payments for: Employing a personal assistant to support and care for your child as an overnight or day carer; Community activities, for example support for your child to attend after school clubs or youth clubs; Short residential breaks; Support with your child’s personal care.
Your local council can provide help if you have a disabled child, including:
- Short breaks
- Holiday play schemes
- Care at home
- Some aids and adaptations
- Financial help, e.g. money towards travel costs for hospital visits
A full description of these services can be found on the Council Website SBC children with disabilities
Southend Borough Council has a duty to provide these services under the Children’s Act 1989. Some are free of charge – the council might ask you to contribute towards others.
To request an assessment of child’s needs contact the social services team tel. 01702 215007 email@example.com. A health professional or voluntary organisation can contact the council on your behalf. Describe your child’s difficulties including the diagnosis of your child’s disability, if you have one. Explain what difficulties you are having and the type of help you would like.
If educational needs are also being assessed, then both can be done at the same time.
The assessment will cover;
- Your child’s developmental needs
- The parent/carers ability to meet their child’s needs
- Family and environmental factors.
How is it completed?
There are no strict rules in the Children Act 1989 governing how Local Authorities should decide whether an assessed child is eligible for support and services. The aim will be to take a holistic approach, to gain a complete picture of support needs. It can include all the family and agencies e.g. school and health professionals. You as parent and main carer will need to give consent before outside agencies are contacted.
To prepare for the assessment it is advisable to gather together all the information you have including medical reports and any letters or assessments completed by other professionals. Think about potential risks (physical, emotional or social harm) if the needs are unsupported; you could include any statements from family and friends.
If you keep a diary, even if it’s only for a few weeks, noting the challenges faced each day and night. It can help you to prepare for an assessment and is also helpful when making an application for a disability benefit. This will help avoid forgetting to mention something important, especially if the level of support your child needs fluctuates day by day.
You should receive a copy of the assessment when it is completed. If there are eligible needs which require the provision of services; the child, parents/carers and the service providers, will discuss and design a care plan.
An explanation must be given if it is decided that no services will be provided. The decision can be challenged using the complaints procedure.
- The Children and Families Act 2014 amends the Children Act 1989 and states that you as the parent and main ‘carer’ can have an assessment at the same time or separately to consider the support you require.
The local authority must take the result of your assessment into account in deciding what, if any, services to provide to your child under Section 17 Children Act 1989.
Support in Schools
Under the Equality Act 2010, it’s against the law for schools and other education providers to discriminate against disabled children. Schools have to make ‘reasonable adjustments’ for disabled children. These can include:
- changes to physical features, e.g. adding a ramp
- changes to how learners are assessed
- providing extra support and aids, e.g. specialist teachers or equipment
The school’s policy on special educational needs will show you what support they can offer.
The Special Educational Needs and Disabilities Information and Advice Service (SENDIAS) within Southend Borough Council provides a free, impartial and confidential service to parents and carers of children aged 0- 25 years who have special educational needs and or a disability (SEND).
SENDIAS aims to
- provide accurate, up to date and impartial resources and information about the law on special educational needs and disability.
- encourage partnership between parents, carers and young people with their school, local authority, social care, health and other agencies
- support children and young people up to 25 years of age; working directly with the child or young person, or work with them and their parent or carer.
- provide information on how to access further help and advice
- provide information on the Local Offer
- give advice by email, on the telephone, face to face and through work with support groups and at workshops.
- give more intensive support if needed. This can include helping with letters, attending meetings with you, or supporting you in discussions with the local authority, school, college or other settings.
Resources including factsheets, and template letters and further information can be found on the Livewell Southend website; Information on SENDIAS
Contact details for SENDIAS; Telephone 01702 215499 or 01702 534793.
Further educational support
If your child aged (up to 25 years) needs more help than the school SEN support can provide you can request an education, health and care needs assessment (EHC).
A request can also be made by anyone else who thinks an assessment may be necessary, including doctors, health visitors, teachers, parents and family friends.
An education, health and care needs assessment is completed by the local authority. An assessment can result in an EHC plan, which explains the extra support the child needs. The council must make sure your child gets this support. The Southend Educational Psychology service will be involved in the assessment and may also be contacted by parents/carers to discuss their concerns.
Southend Educational Psychology Service (EPS) aims to improve the life chances of all through their work within the local community. Educational Psychologists (EPs) are committed to making an inclusive education system and society. EPs offer consultation, advice and training on how our settings, parents and carers might help children and young people to reach their goals.
EPs contribute to local and national priorities, aiming to enhance social inclusion, social and emotional well-being of young people and families and raise attainment.
EPConnect is a phone-line for parents/carers, school staff and other professionals working with children and young people. The link below provides further details
Transition to Adult Services
The Care Act 2014 places a duty on the local councils to carry out an assessment for;
- children who are in receipt of care and support and are approaching 18 years old this is a Child Needs Assessment (CNA) in transition
- carers of disabled children who are approaching 18 this is a Child Carer’s Assessment (CAA) ‘in transition’. Carers of disabled children are entitled to an assessment even if the person they care for does not receive care and support services.
The transition assessment may be combined with other assessments being carried out for example by education and/or health services. The council can be flexible as to when the assessment is carried out. The transition period could start from when the child is 14.
Children’s services should work with adult and community services to provide a transition plan. Some children receiving support from children’s services will not be eligible for support from adult services once the child is 18.
If there is likely to be care and support provided after the child reaches 18 then the services currently provided should continue until the transition assessment has been completed and a support plan agreed.
A transition assessment considers;
- The current needs of the person.
- What needs they are likely to have when they (or the child they care for) reach 18.
- Desired outcomes including; employment, education/training, independent living, relationships and social activities.
- Whether the care is able and willing to continue caring now and when the child turns 18.
- The carers desired outcomes regarding work, education/training and recreational and social activities.
Once the assessment is completed advice and information should be given on;
- Support that can be expected once the disabled child becomes 18.
- If services will not continue information should be given on how the needs can be met or reduced which will include advice on what can be done to stay well and prevent or delay needs arising in the future.
- If services will continue the transfer to adult service care is discussed including the changes in benefits, carer’s assessments and direct payments more information can be found in the section on Direct Payments
- Taster sessions in colleges or employment may be organised.
Family Carers Project
Family Carers is a Southend Carers project for families who are caring for a child or children with a physical or learning disability it offers;
- a monthly event or trip
- an opportunity to make new friends and meet other families in a similar situation
- time to share experiences and information
Southend Carers can also support carers by;
- Making referrals for assessments and supporting through the assessment process
- Advice on benefits
- Free counselling
- Health and wellbeing advice and groups
- Peer support groups
Organisations providing advice, activities and support
Some groups supporting children with disabilities and their families are listed below. More can be found on the Southend Borough Council’s Livewell website.
Scope the disability equality charity in England and Wales.
Little Heroes Little Heroes ASD Support Group is a parent led support group for families of children who are on the autistic spectrum.
Friends and Places Together F&PT offers the opportunity for those aged 13-25 to meet up with friends outside of the school or college environment.
Southend SEND Parents This organisation aims for parents & carers to have easy & accessible information and the chance to contribute to coproduction, to work in partnership, share knowledge & information, motivate and support each other.
Family Voice Southend is made up of parents who know how complex and difficult life can be as a family with a child or young person with a disability of any kind. Family Voice aim is to represent you to the providers of services in Southend for children and young people with SEND.
Southend Mencap supporting people with a learning disability to do the things they love.
SAFE a support group for individuals and families affected by Asperger Syndrome (AS) and High Functioning Autism (HFA) in Essex, including Southend
Summercare information, advice and social events
Active Southend includes sports and clubs suitable for people with a disability
Sarah’s first contact with Southend Carers Hub was taking her three sons on the Family Carers trip to Thorndon Park. These trips are funded by the ‘Short Breaks’ scheme at Southend Borough Council. Sarah was waiting for an appointment at the Lighthouse centre for her eldest son. She’d never thought of herself as a carer but two friends had seen the Family Carers information on Facebook and she decided to give it a try. It was great to meet other parents who understood her worries and frustrations and they shared some useful information too. She found out she could get Disability Living Allowance for her son even though he did not have a formal diagnosis; this extra money helped them access activities in the summer holiday and buy a new washing machine with a tumble dryer which made lighter work of the wet sheets and additional laundry. Sarah asked for some carers counselling sessions, it was a positive move to do something for herself; she started to feel optimistic about the future and more resilient. The SENDIAS team at Southend Borough Council guided her through the process of getting extra support for her son at school and she felt so proud of the progress he was making.