Young Carers and Young Adult Carers

What is a Young Carer and Young Adult Carer?

Young Carer

Young Carers are children and young people under 18, whose lives are restricted in some way because of the need for them to give care to another person (usually a family member) who has a chronic or critical illness, has a physical or learning disability, is experiencing mental ill health, is affected by alcohol or drug misuse, or has a life changing condition such as HIV/AIDS. Young Carers can sometimes be as young as 5 years old. 

  • A young carer has the right to be supported regardless of the extent of the caring role; whether they care for someone every day or only some of the time.
  • They may not be the main carer but supporting by taking on household tasks or minding siblings whilst the parent or another adult is the main carer for the person with care needs.
  • A young carer may have a special educational need, long-standing illness or disability themselves.
  • The difference between young carers and other young people who help in the home is that young carers are often responsible for someone else in their family in a way that most other young people are not.

Young Carers often have greater responsibility than most children of the same age, in one or more of the following areas;

  • Domestic tasks washing, shopping, cooking, cleaning
  • General care, giving medicine, assisting with mobility
  • Intimate care washing, bathing
  • Childcare – looking after brothers and sisters
  • Emotional support listening, helping other family members to feel OK

Young Adult Carer

Young Adult Carers are young carers who are at the age when they are transitioning from childhood into adulthoodThere is no legal age definition for Young Adult Carers; the Care Act 2014 considers adult carers to be aged 18 and above. 

Support for Young Adults Carers is usually focused from age 16-25 years old to help with transitional carer responsibilities and learning their rights as an adult carer. The needs of Young Adult Carers are different from young carers and adult carers. 

Young Adult Carers take on significant additional responsibilities which can make the typical transitions from childhood into adulthood especially complex and challenging.

The difficulties they experience as a result of their caring role can have a significant and long term impact on their confidence, socialisation, their engagement with education and employment and their overall physical and emotional wellbeing.

Young Carers and Young Adult Carers may gain many skills through their caring role for example; budgeting, prioritising, increased empathy and deeper understanding of others.

Being a Young Carer and Young Adult Carer can have the following impact on their lives;

  • It can affect a young person’s health, social life and self confidence
  • Many struggle to manage their education, working life and caring role which can cause pressure and stress.
  • Young Adult Carers often attain lower grades at school this can have a negative impact on their life opportunities and the forming of their own identity and independence.
  • Young Adult Carers aged 16-18 are twice as likely to be not in education, employment, or training (NEET) as their peers without caring responsibilities
  • Young Adult Carers are particularly vulnerable to periods of unemployment because of their caring responsibilities which can be misunderstood by employers. This is particularly difficult when Young Adult Carers are at the outset of their careers and have not yet had the opportunity to establish themselves at work.

Southend Carers Young Carers Support 

This support programme provides weekly and monthly activities for young carers aged 5-17 years. Separate activities are arranged for different age groups and take place in a variety of venues and areas. Young carers have opportunities to;

  • Have fun and make new friends.
  • Meet other young carers and realise they are not on their own.
  • Space to work through emotional stress
  • Support to build on coping and resilience skills.
  • Time away from caring responsibilities

Activities include;

  • Music workshops 
  • Art and craft 
  • Sports 
  • Martial Arts Taster Session 
  • Forest School sessions 
  • Drama workshops 
  • Lego Sessions 

The Young Carers Support  Project posts information of their activities on Southend Carers and Carebook Facebook pages.  To enrol on the Young Carers Project complete the registration form on the Young Carers section of the Southend Carers website; Young Carers project – Southend Carers

Southend Borough Council have a Young Carers Service who also organise three after school groups for young carers 

Sycamore Club for ages 5-8 years 

COOL Club for those aged between 8-11 years (end of school year 6) and  

CHIL for those aged between School Year 7 and 18 years of age. 

To be referred to the Young Carers service call The Early Help, Family Support and Youth Offending Service (EHFSYOS) on 01702 534300.

Useful online resources; 

Carers Trust – Young Carers 

Carers Trust – Young Carers mental health support 

Children Society – Young Carers Know Your Rights 

Childline – Young Carers Support 

Kooth – online mental health and counselling support for children aged 11-18 

The Mix – mental health support for young carers 

Schools Support

Schools have a key role in identifying and supporting young carers. Young Carers can face the following difficulties in school;

  • anxiety for the person they care for during school hours
  • insufficient time or space to complete homework
  • difficulties in attending or being punctual for school
  • difficulties taking part in after school activities and school trips

Primary schools can use the pupil premium specifically to help young carers; to improve their progress and attainment at school and ensure their educational opportunities are not restricted due to their caring role.

It is recommended each school appoints a member of staff to be the young carer support officer. Young carers would then have one person in the school to meet with, to talk about any concerns and to help find solutions to difficulties. 

The Carers Trust and The Children’s Society jointly run a young carer in school project   which is a free initiative that makes it as easy as possible for schools to support young carers, and awards good practice;

https://youngcarersinschools.com/

Southend Educational Psychology Service (EPS) can have a vital role to play in ensuring young carers receive the support they need to reach their goals, particularly within school and college.  Educational Psychologists (EPs) are committed to making an inclusive education system and society and offer consultation, advice and training on how our settings, parents and carers might help children and young people to reach their goals.  

Educational Psychologists contribute to local and national priorities, aiming to enhance social inclusion, social and emotional well-being of young people and families and raise attainment. 

EP Connect01702 212690 is a phone-line for parents/carers, school staff and other professionals working with children and young people. The link below provides further details 

http://www.southendlearningnetwork.co.uk/educationalpsychology   

Local Authority Support Young Carers Assessment

Local authorities have a duty to take ‘reasonable steps’ to identify Young Carers. Staff in schools, GPs, and other agencies have an important role to make sure no one is missed.  Southend Borough Council’s Young Carers service is accessed through The Early Help, Family Support and Youth Offending Service (EHFSYOS) contact no. 01702 534300.

A Young Carers Assessment from the local authority is an opportunity to check that enough support is provided, so the Young Carer can reach their full potential and does not have an ‘inappropriate’ level of responsibility in caring for the family.

A Young Carer should not be missing out on the opportunities children of the same age have, because of their caring role. This includes; time with friends, achieving their best at school or college, getting a job or following their aspirations. The Carer role should not have a negative effect on the Young Carer’s physical or mental health.

The Local Authority should offer a Young Carer’s Assessment or the Young Carer or their parents can request one. The assessment should be a whole family approach considering not only the needs of the Young Carer but how different people in the family support and rely on each other.

A Young Carers assessment can if you wish include people outside the family. It might be good to ask for a teacher or close friend /relative to be involved.  They can speak up for you particularly if you think you might find it difficult to say everything you want to say.

A written copy of the assessment should be given to those people who took part and can be given to others at the Young Carers’ or their parents request e.g. a copy to the school, GP, or Young Carer coordinator.

A Combined Assessment is when the Young Carer’s assessment and an assessment of the needs of the person they care for are completed together.  If you agree to a Combined Assessment each person should still have the opportunity to talk separately and in private to the assessor/s.

The Statutory Rights of a Young Carer are written in the Children and Families Act 2014 part 5 section 96 and in line with the Young Carers (Needs Assessment) Regulations 2015

How to prepare for an assessment

It’s a good idea to keep a diary at least for a few weeks to write down things as they come up so you do not forget to mention things during the assessment.

Ideas of what to include are;

  • A description of your typical day or week including the care you provide, things that go well and not so well, your thoughts and feelings.
  • How things are different on school days and at weekends or in the school holidays and if the person you care for has good days and bad days.
  • Note down the things you would like to do now and anything you want to give up.
  • List your hopes and dreams for the future.
  • List what support or services help you now and what further help you would like.

The assessment will aim to support the outcome the Young Carer wants; acknowledging the family circumstances and the age and level of understanding the Young Carer has.  Any differences of opinion between the Young Carer and their parents is taken into account as well as the Young Carers feelings and if the caring role limits their opportunities.

Areas looked at:

  • The care provided by the Young Carer and how much this is relied upon to maintain the well-being of the person they care for.
  • How the care provided impacts on the Young Carer’s well-being, education and development including their friendships, hobbies and social activities.
  • Whether any of the care provided is excessive or inappropriate for the Young Carer; examples could be administering medication, managing the family finances, personal care and emotional support to an adult.
  • Whether providing services to the cared for person or another member of the family could take away the Young Carers support needs or meet them in part.
  • Whether the Young Carer is a child in need.
  • Whether any other assessments have been completed for the family.
  • Any action required and whether a review is necessary at a future date.

What support can be provided?

  • Help for the person you look after e.g. a paid carer in the morning so the Young Carer can get to school on time and support later in the day so the Young Carer can take part in after school activities.
  • Time away from the person you care for so you can do other things outside of caring. This may include signposting to Southend Carers ‘Better Lives’ project.
  • Emotional support such as breaks and counselling.
  • A review date to check how things are going.

Young Adult Carer Transition Assessment

The local authority must conduct a ‘transition’ assessment for Young Carers (with their permission) who are approaching 18 and may have needs related to caring after they have turned 18. The Young Carer would usually give permission for the transition assessment to be completed when they are 14 to 17 years old.

The transition assessment takes into account the Young Carers needs and how they may change after secondary education to ensure enough support is in place when the Young Carer moves on to university/college, training, apprenticeship or paid employment.

A transition assessment should be a joint assessment involving both children’s and adult services within the council.  The guidelines are written in the Care Act 2014 section 63-65 and following the Care and Support Statutory Guidance

If the young adult and cared for person agrees the assessment could be a combined assessment (an assessment of the person you care for as well as you, the carer).

The transition assessment is similar to the Young Carers assessment.  Full account is made of whether the Young Carer wants to; continue to provide care as a young adult, stop being a young adult carer or make changes to the caring responsibilities.

In addition the following areas are discussed;

  • The support the Young Carer requires after they turn 18 so they can follow their aspirations.
  • Whether the council will provide support to the Young Carer when they turn 18 and/or to the person they care for. Also whether any support provided will be chargeable.
  • Information and advice including other services able to provide support e.g. Jobcentre Plus, community groups etc. Some colleges and universities provide additional support to carers including bursaries.

Support available

Transition Assessments and Carer’s Assessments can identify support available to prevent the caring role having a negative impact on a carer’s own health and wellbeing and also address the carer’s hopes and aspirations for the future.   

Helpful online resources include; 

Children’s Society Whole Family Pathway – Practitioners resource 

Carers UK – Caring and relationships 

Carers Trust – Young Adult Carers Getting into Work  

Learning and Work Institute Really Useful Book of Learning and Earning 

Contact Southend Carers for further help and support.

Any carer over the age of 18 has the right to a Carer’s Assessment under the Care Act 2014 even if the person they care for does not want or does not get support themselves.

A Carer’s Assessment is an assessment of the impact the caring role is having on your own health and wellbeing and not in any way a test or assessment on how good you are at supporting the person you care for.

The assessment should take into account the aims of the carer in education, training and future employment as well as personal aspirations; social, leisure, spiritual, volunteering etc.

The assessment will also look at additional responsibilities you have for others (children and adults) and your own wishes in continuing to take on the caring role.  More details can be found in the e-handbook section Assessments – Asking for help.

Changes in Circumstances

Whenever the situation of the carer or the person they care for has changed you may want to request an assessment or a review of a previous assessment to find out what extra support you could get. For example if the carer is starting a new job or training.

It is advisable to contact the local authority to discuss the need for an assessment;

Southend Council Adult Carer support contact 01702 215008   email: accessteam@southend.gov.uk

The Local Authority Young Carers’ service is accessed through The Early Help, Family Support and Youth Offending Service (EHFSYOS) on 01702 534300

The following links on the Carers Trust website have more information:

Carers Trust – Know your Rights

Carers Trust – Getting work guide

Flexible Support Fund

Work Coaches as Jobcentre Plus can access the Flexible Support Fund which can be given at the discretion of the DWP advisers for help related to finding work including;

  • Travel expenses
  • Training courses
  • Clothing for interviews

To discuss the need for an assessment contact the local authority; 

Southend Council Adult Carer support contact 01702 215008   email: accessteam@southend.gov.uk 

The Local Authority Young Carers’ service is accessed through The Early Help, Family Support and Youth Offending Service (EHFSYOS) on 01702 534300 

The following links on the Carers Trust website have more information: 

Carers Trust – Know Your Rights 

Carers Trust – Getting Into Work Guide  

Preparing for the unexpected/ planning ahead

Planning ahead as to what you would like to happen in the event of an unexpected emergency can bring peace of mind to young and young adult carers and also the people they care for. This will be useful to help the young carer know what to do in the event ofthe adult responsible for them is hospitalisedthe cared for carers/support workers are unable to provide their normal support or the young carer has an emergency that prevents them from completing their caring responsibilities.  

Create a list of contacts both friends and family and professionals from health and social care, education and local charities who could help if replacement care or additional support were needed temporarily and/or immediately. It is advisable to also to keep a record of information that anyone providing temporary replacement care would find useful.  Keep these details together in a safe place which is easily accessible when needed. This is an informal process between the family adult responsible for the young carer and the young carers to think about together and write down.  

To create plan, think about the tasks that need to be done and the information a ‘replacement carer’ would need, to complete these tasks. 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. dog walking. On the other hand, there may be a friend or member of the extended family who can take the pet in temporarily. 

If you create a few copies of this plan you can try to ensure that a copy will be available and visible, whatever circumstances arise.  You may give a copy to one or more trusted friends/family.  It is also important to ensure any emergency contact you nominate is aware they are the emergency contact and where you keep these details. Having two designated contacts is a great way to keep the young carer and other children living in the home safe.  

Suggestions of details to include are; 

Name and contact details for; 

  • You and the person you care for 
  • Back up carer if there is one or more (friends, family or professionals) 
  • Next of kin  
  • GP, pharmacy and other health care professionals 
  • School contact details ( school lead name and contact number) 
  • Details of who the Young Carer will need to stay with or who will come to stay with them temporarily if under 17 years old 
  • Who will take care of other children under 17 

Care details; 

  • 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  

Details of; 

  • 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 

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 or you can visit Incaseofemergency.org  

Fire Safety 

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. 

Resources which could help you create plan for the unexpected are; 

Carers UK interactive online tool https://carersdigital.org/mybackup/ 

Apps such as Carers UK ‘Jointly’ can also be used to keep all important information in one place and shared to the people within your ‘care circle’ https://jointlyapp.com/  

Alzheimer’s Society ‘This is Me’ https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/this_is_me.pdf 

Southend University Hospital, Hospital Passport suitable for adults with learning difficulties, 

http://www.southend.nhs.uk/media/117955/ld_hospital_passport.pdf 

 

Case study

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.