Supporting disabled children and young people from 16yrs
A brief introduction for foster carers caring for and supporting disabled children and young people 16yrs+
About the author Carolyn Moody
The author of this page is FosterWiki expert by experience Carolyn Moody. Carolyn is a foster carer with 20yrs experience of caring for disabled children and young people, including post 18yrs as a Shared Lives host for 8 years. In 2021 Carolyn won Foster Talk’s ‘Outstanding Commitment to Fostering Children with Disabilities’ award.
As a foster Carer, you have to be an extremely strong advocate on behalf of the children you care for. To do this work you have to be confident in your role and abilities when working with vulnerable children and young people. It is so important to build strong relationships with them and show a good balance of support. Allowing the children and young people to develop to their individual potential.
Commitment is key and is invaluable as it provides young people with continuity of care and stable family life. Your experience and support is paramount through their transition to adulthood, which is often a highly anxious and vulnerable time for young care leavers.
2. SEND – Special Educational Needs and Disabilities
This is what is referred to when we care for a child with special educational needs and disability. A child or young person has special educational needs and disabilities if they have a learning difficulty and/or a disability that means they need special health and education support.
Children, then adults with learning disabilities see, hear, and understand things differently. This can lead to problems with learning new information and skills and putting them to use.
The most common types of learning disabilities involve problems with reading, writing, math, reasoning, listening, and speaking. They just need to be taught in ways that are tailored to their unique learning styles. By learning more about learning disabilities in general, and your child’s learning difficulties in particular, you can help pave the way for success at school and beyond.
3. Physical Disability
The loss of physical capacity results in the person having a reduced ability, or inability, to perform body movements such as walking, moving their hands and arms, sitting and standing as well as controlling their muscles.
A physical disability does not necessarily stop you from performing specific tasks but makes them more challenging. When we are talking about children and adults, we should identify them as having a disability, not a special need.
4. Hidden Disabilities – Not all disabilities are visible
Not all the disabilities our children and young people have are visible and some are not immediately obvious.
These can include autism and learning difficulties as well as mental health conditions, mobility, speech impairments, and sensory loss such as speech, sight loss, hearing loss, or deafness.
Although you may not be able to see these disabilities they are still there and children and young people living with these often face barriers in their daily lives including a lack of
understanding and negative attitudes.
There is government guidance on hidden disabilities (see links below) you can also, if appropriate, get your child or young person a Hidden Disabilities Sunflower to discreetly identify that they may need support, help, or just a little more time in shops, transport, or public spaces.
Here is a link to the Hidden Disabilities Sunflower lanyard website: https://hiddendisabilitiesstore.com
5. Introductory guidance for foster carers looking after a disabled child
- Children and young people in foster care who are disabled need more opportunities to identify what is important to them and influence their own care. Foster carers need to recognise that transition is a process, rather than a series of assessments and reviews, that young disabled people’s transition to adulthood may well take longer because of the barriers they face.
- When caring for a child who is disabled it is crucial to have a good support network. Equally important is to build a good working relationship with your support worker and who gets to know you as a family.
- When you have children who have language and understanding difficulty of everyday life, sometimes it can be easily taken out of context by someone who does not know you. It is really important to keep good notes and to make sure they are read and that you have this in writing because of allegations.
- It’s really important to develop independent living skills as early as you can so you can give children the tools necessary for one day becoming more independent, and into adulthood. Just because they are disabled does not mean they can’t do this; it just might take a little longer.
- Don’t do things for them, let them try and then if they really can’t do it, show them again. Give them tasks to do around the home and out in the community like getting used to shopping, paying by card and talking about money. In discussions problem solve, ask them if they had a problem who would they talk to.
- I have personally found as a foster carer that during assessments, reviews and meetings they are often about meeting their care needs or talking about what they can’t do because of their difficulties. However, it should also be about identifying disabling barriers and enabling them to overcome those by building on their strengths and strengthening their weaknesses in a targeted, proactive and focused way. “We should not be viewing them a slow learner, but a different thinking one, so foster carers need to be aware of this and be proactive in those meetings.”
- You need to be confident in speaking out because often children are dependent on us to share important information. It is especially important that the child fully understands and is always involved in planning and what is expected of them.
- A child who is disabled going through any type of transition will be likely to require more detailed planning. There are times when we know the child better than any other professionals so we need to be someone who will push to get the best for them, even if we feel that an independent advocate is required.
- Some young people have had a high degree of adult supervision in their lives, so face many barriers to an independent social life and they will possibly need extra 1.1 support to achieve this.
- Disabled children are very vulnerable and we need to keep them safe from harm as they are too trusting, believe everything they are told and trust other adults easily so they are particularly vulnerable.
- Building a good relationship and planning for transition begins early so that there is time to establish good communication and build a trusting relationship with your young person and other professionals you work with as part of a team.
- Additional planning will be needed that includes reviewing the child or young person’s care plans in areas such as moving and handling needs, physiotherapy programmes, health and education care planning, epilepsy specific plans, communication passport, positive behaviour plans, nutritional plans and any other relevant reports or risk assessments.
6. Dealing with ‘Black and White’ Thinking.
You may find social workers and other professionals often expect young people to be able to think about things in the same way they do. They may not be aware that the thinking processes of your young people are different. Adults may know this on a conceptual level but find it hard to take this into account when communicating with a young person. It is our job to explain this to them, get them to understand the emotional age they are functioning at, not their real age and that they are just not ready to think in more mature ways, as they are simply not developmentally ready and in some cases may never be.
This area is a struggle to get others to really understand especially as we know we may be looking after a child with a “hidden disability”. We will often work with children who can’t advocate or speak for themselves and are being mistreated or not given the help that they need and are just portrayed as a child who has behavioural issues.
If you suspect there is a problem with your child, be that pushy foster carer and ask for assessments to be done. We often know the child best. It is important for foster carers to understand it is not only the learning disability that causes problems but also the anxiety and paralysis that compounds the learning disability. Acting defiantly may be a way of protecting themselves from the fear of failure, and it is good if we can recognise those signs.
How a child sees his or her disability is dependent on how that disability is explained and communicated by us. Many disabled children have little experience of an independent social life and few opportunities to make friends. You should recognise that relationships, particularly with their own peer group are often the most important issue.
7. Disabled children and their educational needs
In society we have seen the stigma, people, in general, think that young people who are disabled will be at a specialist provision school then will move on to specialist college or into adult day services.
As Foster carers, we need to change this stigma because there are famous and accomplished individuals who have achieved greatness because of their way of thinking! We can do this by being positive, being supportive, and shouting the loudest, if need be, in making sure that they get all the help they need for them to achieve.
Following education and training, young disabled people experience barriers to paid employment. However, they can achieve, they can just need extra support and it’s a little harder for them, rather than putting them on a track for continued failure.
8. Transitions team and Pathway Plan
The Transitions Team
Young person at 16yrs transitions from the disabled team into the young person’s Team. (Other councils may have a different name for this service). The idea is that they get a social worker from that team and they support them until 25yrs. If the young person was in foster care under Permanency, then they will assume they are staying with that foster carer under Staying Put. However, Staying Put is not suitable for some disabled children so they may decide on Shared lives.
Some foster carers have experienced difficulty getting a young person into this service as there are strict criteria. They will consider Shared Lives if the child has an EHCP (Education, Health and Care Plan, see section 16) a diagnosis of ASD (Autism Spectrum Disorder) and other health and education needs.
Securing the Shared Lives service is more expensive for the local Authority and many carers have to fight to get the young person in if they are not physically disabled with additional needs. Once in Shared lives, you can get paid short breaks. If you consider this is the right service for your young person then you will need to be a strong advocate.
All this can be very stressful for foster carers, many looking after a child for years, then soon to become a care leaver and you don’t know at this point what the plan is, or even if you can or are able to offer the same quality of care, I don’t think other professional realise this.
When you can’t plan it does impact your own mental health and you know the decision they make will be life-changing for that young person. Start the ball rolling by knowing and following your Local Authorities policy and procedures. Don’t let it drift. Discuss and plan in all ‘Looked After’ child reviews, I would suggest by the age of 15yrs.
When you care for a disabled child, you’re always planning and getting them ready for change or any transitions. It would be very difficult if left to the last minute and you need plenty of time to prepare them, especially if foster carers are not continuing to care for them as adults.
The Pathway plan
Part one records the assessed needs, part two the actions and services for the young person required to respond to the assessed needs and to provide support during the transition to adulthood.
This should be done with the young person and it should be reviewed every six months and until they are 21 or beyond if in education.
Young people must be actively involved and it is important it is their views. It should also include the views of other significant adults and professionals, current foster carer/s and all that are involved in their lives.
There is a section on practical and other skills, in this part, it will show if the young person is ready to take more responsibility in being able to manage independently. For a disabled young person with additional needs, they may have an additional assessment on their mental health capacity under the Mental Capacity Act to ensure the young person has support to make informed decisions.
This should be in accordance with the Mental Capacity Act 2005: https://www.gov.uk/government/collections/mental-capacity-act-making-decisions
Further information on Pathway Plans can be found here on FosterWiki https://fosterwiki.com/wiki/pathway-plan/
9. Schools and Education – accessing and advocating
An EHCP (Education and health care plan) is reviewed annually from year 9 the child will get a full review to understand what support they will need to prepare them for adulthood.
If a mainstream school cannot provide all the help with your child’s needs and you suspect the child may have special educational needs or a disability you can ask for an EHCP assessment. However, many people are struggling to get this done and this is well documented.
Access help from and contact your local SEND teams and support services:
- Special Needs jungle www.specialneedsjungle.com
- SEN https://help.org.uk/#/en/home
- Child Law advice www.childawadvice.org.uk
10. Transition from School to College
Change can be difficult so it is important to have a good transition plan in place and make sure you have a named contact person in place if you need to contact them. It is many carer’s experiences that colleges will treat the young person as an adult even if they are functioning younger than their age, and are usually reluctant to share information with you so you are often left in the dark as to how well they are doing. It’s a good idea to get written consent from your young person so that the college can share any information with you.
Adjusting to having fewer and less structured supports is difficult for many young people as they are often functioning at a lower emotional age. Make sure VS (Virtual School) are on board or the 18+ support worker and invite them to the Educational Health Care (EHCP) reviews, encourage the Young Person to attend and participate in some way. Make sure the support is given that is required according to the EHCP hold the school or college to account.
As you are advocating for them look at the different ways in which young people communicate, laptop, iPad, mobile, social stories, pictures, photos of people and settings, creative role play in different scenarios, can all be used to promote communication and enable them to express their views. It’s important for carers to work with other professionals with young people from minority ethnic communities, and those with significant cognitive and/or communication impairments so you feel supported. Seek out, support groups.
There are many meetings for children and young people in foster care and as carers, we encourage young people to attend all meetings about them. Filling in forms that are not disabled-friendly can be an issue as it’s important the young person has the opportunity to take part fully in the process. Forms should be disabled friendly, if they are not raise this with your local authority or agency.
Some carers find that if their young person or child has communication and understanding difficulty they rarely understand the questions on the forms and that it is better to meet with them and understand from body language and cues that the child is happy and loved.
Our young people can be encouraged to chair their own child in care/looked after child reviews too. Don’t be afraid to insist that the Independent Reviewing Officer (IRO) meets the child or
young person at home and privately before reviews so they can share anything. This is also best practice on behalf of the LA or agency so don’t be afraid to request this.
When the child’s social worker (CSW) carry out their statutory visits many carers suggest that they take them out for a meeting in the community, such as a cafe or park. As foster carers, we are aware of how difficult it must be for the child or young person to voice anything about their carers whilst in the house and as carers, we should welcome this feedback. It is also vital that IRO’s and CSW’s take time to get to know the children.
It is important for a foster carer to advocate and speak out on behalf of their child or young person, and to encourage them to speak out too.
12. Mental Health
Children may have access to CAMHS (Child and adolescent mental health services) This will be arranged by the child’s social worker, again here you have to be a fierce advocate for your child or young person in accessing these services.
When your young person turns 18yrs they will no longer be able to access CAMHS and will be classed as an adult when accessing mental health services.
13. Activities and making friends
Making and keeping friends can be the most important/difficult aspect of their lives so try and support their friendships as much as possible. They can face negative attitudes of non-disabled peers and some adults who don’t understand their difficulties because they look ok and just think they are being badly behaved or rude.
Engage them in clubs and community activities, as soon as you can, make sure they are supported in this, helping them to be comfortable in a variety of situations with different people, and give them the skills and support to build on. Once you find out what they enjoy you can build on it.
14. Sex and sexuality
Sex and sexuality are important issues but professionals do not always recognise that disabled young people will have the same sexual feelings as others of their age, although they may be functioning at a lower age they still go through puberty. This can result in a lack of information and inappropriate advice, creating confusion.
As foster carers we must discuss appropriate relationships, personal interactions, keeping safe online, supported to have positive, healthy, informed and safe relationships and talking about consensual sex and this needs to be an ongoing discussion.
15. Post 18yrs
- Although a young person is an adult at 18 and will be a care leaver, they may still need help so if appropriate Staying Put will be discussed with the foster carer. Depending on the expectations of the care required. Further information on staying put can be found on FosterWiki here https://fosterwiki.com/wiki/staying-put/.
- Shared Lives might be the better option. It is important that you insist that this should be discussed in full with you first as the foster carer, so you know what will be expected of you and if you can continue to care for an adult, as It is very different to caring for a child.
- This should seem like the normal process but in my experience, they do not do this, and it can be very difficult if you decide the young person is not going to stay with you. You also need to think about how now as an adult they will be making their own decisions and it will be completely different from when they were with you and you were their foster carer making a lot of the decisions.
- ‘The Mental Capacity Act 2005 is a law that protects vulnerable people over the age of 16 around decision-making’. It says that: Every adult, whatever their disability, has the right to make their own decisions wherever possible.
- People should always support a person to make their own decisions if they can. The Pathway plan states it will keep everyone focused on the areas we need to work on to ensure things keep improving for the young adult. It is crucial that the Pathway plan reflects their needs in full.
- As Foster carers, we know that a young person will have the same needs on the following day of their 18th birthday but they will now be an adult. It is my experience that you will need to argue this as they will expect to reduce your payment now as an adult with the same needs which is completely unsatisfactory. Without the same care and support as before they won’t manage. They may still need to have strong boundaries and help with routine and daily living as an adult because of their disability. It is often this that has helped them to achieve well, so this must continue.
- As disabled adults, they may need a visual chart to remind them of what is expected of them at home and out and about in the community, for their appointments, shaving, birth control, activities, online banking and a breakdown of how much money they can afford to spend. It is good to note with the person how they would like to be helped and how they would like this to happen and do this together.
- Personal care – Some Young people may still need help with personal care at home and at school or further education, so this should be fully discussed during any transition.
- As an adult, your job is to offer advice, support, encourage and include them in every decision. Care experienced people wanting to move into their own homes face considerable barriers. Carers need to be aware of what the barriers are from young people’s points of view.Plans, strategies, assessments should all start by finding out from young people themselves what they want to achieve and what gets in the way. As carers, we should recognise the importance of multi-agency assessment and planning for some young people, and ensure that health, social services, education, housing and employment services are actively involved.
16. Useful information
EHCP – Educational, Health, Care Plan
This is a legal document. It covers your child’s needs, the benefit or difference the support should make to your young person and the support that your local authority must provide.
Special educational provision is anything that “educates or trains” your child. This could be anything from individual support to speech and language therapy. EHCPs are there to support children who have needs that SEND support cannot meet. Additional planning includes reviewing the child or young person’s care plans in areas such as moving and handling needs, physiotherapy programmes, health and education care planning, epilepsy specific plans, communication passports, positive behaviour plans, nutritional plans and any other relevant reports or risk assessments.
ASD – Autism Spectrum Disorder
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition. Other causes are not yet known. Scientists believe there are multiple causes of ASD that act together to change the most common ways people develop.
Diagnosing autism spectrum disorder (ASD) can be difficult because there is no medical test, like a blood test, to diagnose the disorder. Doctors look at the child’s developmental history and behaviour to make a diagnosis. ASD can sometimes be detected at 18 months or younger.
DLA – Disability Living Allowance
Disability Living Allowance (DLA) is money for children and young people who have extra care needs or mobility needs (difficulty getting around) as a result of a disability Its is really important you familiarise yourself and be informed on how DLA works as you may be asked to account for how this money has been spent, it is also a good idea to have a separate bank account for it.
PIP – Personal Independence Payment
Personal Independence Payment is extra money to help you with everyday life for children and young people with an illness, disability or mental health condition.
Foster carer’s fees and allowances
Your local authority or agency will set payments. You may be recruited as a single placement at a higher rate or you may have multiple placements that are generally paid the same rate. Make yourself aware of the local authorities payment policy and the tax implications of your role. See FosterWiki’s ‘The business side of self-employment’.
The Virtual School acts as a local authority champion to promote the progress and educational attainment of Children in Care (CiC) and Young Care Leavers (YCL) so they achieve educational outcomes comparable to their peers. Ensuring that they receive a high-quality education is a foundation for improving their lives.
The school does not exist in real terms, or as a building. Children do not attend it – they remain the responsibility of the school at which they are enrolled. The VS is simply an organisation that has been created for the effective co-ordination of educational services at a strategic and operational level.
Personal Advisors (PA’s)
A Personal Advisor, otherwise known as a PA should be assigned to a child at 16yrs. They are there to be an advisor and assistant in all that the child will need when they turn 18yrs and leave care. The Personal Advisors are a mainstream service. They are often not experienced in their job and are pretty much reliant on being trained on the job as they come from all backgrounds in previous jobs.
When you have young disabled adults, they know very little. They can be helpful in helping to support referrals or education. SEN/Disabled young adults can be very vulnerable and find it difficult to build relationships if there are too many changes of workers or indeed too many workers involved with them.
Most Local Authorities have an advocacy service they buy-in. Some LA’s for example may have “The Young Lives Foundation”. If an issue is not resolved by the LA it can end up going to a solicitor depending on the nature of the dispute. The child might get legal aid, but once they are 18 this could change. If this goes to court the advocate usually can’t support this so you will need to find a Pro Bono solicitor who will take the case further.
Usually, a Carer who goes free and person if they are travelling together, you can also get a disabled person’s railcard for child or child or adults disabled bus pass. Contact your local council to find out who issues disabled bus passes in your area as part of the English National Concessionary Travel Scheme. You’re eligible for a disabled person’s pass if you live in England and are ‘eligible disabled’.
Further information can be found here. https://www.gov.uk/government/news/free-bus-passes-for-older-and-disabled-people-protectedfor-the-future
Breaks for carers
Breaks are essential for carers of disabled children and young people and should be provided in line with policy. The Short Breaks Regulations provide details on how local authority must perform their duty in the Children’s Act 1989. Further information can be found here on short breaks for carers of disabled children https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/245580/Short_Breaks_for_Carers_of_Disabled_Children.pdf
17. Support, help and tools for you and your child
Other foster carers can be great support and comfort if they are also caring for a disabled child or adult. They will understand how restricted your life can feel at times. Just how much harder you need to fight for those services. Sometimes it’s just about sharing experiences good and bad, someone who listens, even have a laugh together that get you through the tough times. There is support out there and plenty of information on the net. (just a few below)
Local Offers for Care Leavers: https://fosterwiki.com/wiki/local-offers-for-care-leavers/
Local Offer Guidance for Local Authorities: https://fosterwiki.com/wiki/local-offer-guidance-for-local-authorities/
Stigma and discrimination – research and statistics https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/stigma-and-discrimination-research-and
Young lives foundation
Action for Children
Child Law Advice
18. Information, Help and Support
Help and support created for foster carers, by foster carers, we are the experts by experience. We have the first foster carers knowledge bank.
Access both the open pages and members area. Both are free to access and footprint-free. The member’s area gives you privileged confidential access to FosterWiki’s experts by experience for advice and guidance. You will also find short courses and guides from the foster carer’s perspective, top tips, allegation help, templates, and the ability to add to FosterWiki. With more content being uploaded regularly.
Links to the following FosterWiki pages:
- Pathway plan https://fosterwiki.com/wiki/pathway-plan/
- Staying put https://fosterwiki.com/wiki/staying-put/
- Shared lives https://fosterwiki.com/wiki/so-you-want-to-do-shared-lives/
- Rights of disabled people – Government guidance https://www.gov.uk/rights-disabled-person
- Discrimination rights – Government guidance https://www.gov.uk/discrimination-your-rights
- Definition of disability under equality act 2010 https://www.gov.uk/definition-of-disability-under-equality-act-2010
- Non-visible disabilities – Government guidance https://disabilityunit.blog.gov.uk/2020/12/17/living-with-non-visible-disabilities/
- Safeguarding and promoting the welfare of disabled children – Government guidance https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/271205/Short_breaks_-_how_to_safeguard_and_promote_the_welfare_of_disabled_children.pdf
- EHCP Education and health care plans enacted – Government guidance https://www.legislation.gov.uk/ukpga/2014/6/part/3/crossheading/education-health-and-careplans/enacted
- PIP – Personal Independence Payment – Government guidance https://www.gov.uk/pip
- DLA – Disability living allowance – Government guidance https://www.gov.uk/disability-living-allowance-children
- The Designated Teacher – Statutory Guidance on their roles and responsibilities https://www.gov.uk/government/publications/designated-teacher-for-looked-after-children
- Statistics – Government statistics for looked after children – England https://www.gov.uk/government/collections/statistics-looked-after-children
- Promoting the education of looked after children – Government guidance https://www.gov.uk/government/publications/promoting-the-education-of-looked-after-children
- Short breaks regulations – Government guidance https://www.gov.uk/government/publications/short-breaks-for-carers-of-disabled-children
- The Pupil Premium – Government guidance on school head’s responsibilities https://www.gov.uk/guidance/pupil-premium-virtual-school-heads-responsibilities
- Virtual school – Government guidance to promoting the education of children with a social worker https://fosterwiki.com/wiki/virtual-school-promoting-the-education-of-children/
- NHS – Moving from children’s social care to adult’s social care https://www.nhs.uk/conditions/social-care-and-support-guide/caring-for-children-and-young-people/moving-from-childrens-social-care-to-adults-social-care/
- Bus passes for disabled children and young people https://fosterwiki.com/wiki/free-bus-passes-for-disabled-children/
- Stickman Communications https://stickmancommunications.co.uk/about-stickman-communications/