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
Lighthouse Centre & Respite
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
Once referred to the centre your child will be assessed individually by a therapist. You will receive support to self manage the child’s needs with access to the centre for ongoing advice.
Depending on the assessed needs you may be offered advice in the form of a report, a one-to-one therapy session with a therapist to work on your child’s goals, or if required you may be referred to one of the groups run at the lighthouse centre.
Respite Care for Children with Additional Needs from birth -16 years is available. The respite service is designed to give the main carer a break from the caring role and can be used;
- For yourself
- With spouse/partner
- Time for siblings
- Catch up on day–to-day chores
The care is delivered by qualified nursery nurses trained specifically to meet individual health needs of each child
- The aim is to offer at least 3 hours per respite session on a regular basis
- The service is available between 8.30am – 4.30pm Monday – Friday (excluding bank holidays)
- Contact: Dee Quay Specialist School Nurse Lead Lighthouse Development Centre
Tel: 01702 507102, Mobile: 07779 289240
Local Authority Support
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. It is a statutory requirement that this ‘Local Offer’ information be made available in a printed copy if required.
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. More information can be found on the Southend Borough Council website at the following link Definitions of special educational needs and disability
Details of activities and services available can be found at the following links;
Children 0-4 Local Offer for 0-4year olds
Children 4-11 – Local Offer for 4-11 year olds including childcare options and Short Breaks
Children 11+ – Local Offer for 11+ including home to school transport, childcare and Short Breaks
The Local Offer for 0-4 year olds includes funding to access early education support;
Disability access fund (DAF) for 3- and 4-year olds. The eligibility criteria are;
- Your child is in receipt of child disability living allowance (DLA) and;
- Your child receives the free early education entitlement
Inclusion Fund – accessible to early years settings the Early Years panel look at the following criteria;
- Your child is identified as having a special educational need that is a barrier to learning.
- Your child is already on the caseload of a Local Authority SEN Advisor and is in receipt of one or more of the following community services; Portage, Paediatric Therapy Services, Occupational Therapy, Physiotherapy, Speech and Language Therapy and Health Visitor and also supported with an Individual Support Plan.
- The request for additional funding is supported by the professionals working with your child.
- Evidence that the setting has already made reasonable adjustments to meet the needs of your child.
- Evidence that the setting has already put in place appropriate interventions, used the strategies recommended to them and measured their impact.
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.
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.
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.