All Kinds Of Everything Parent Notes

Why might it be of interest?

There’s so much to know about when your young person becomes a young adult and moves into adult based services.  You will be aware of a lot of these changes but there will be things that you don’t know about – and possibly don’t even know that you need to know about.

Not everything will affect your young person but by having an awareness of everything that might change will help you determine what might affect your young person and any action you need to take to prepare for the transition into adult services.

I have further documents with more information on the topics covered in this workshop on the information hub:  https://ruils.co.uk/article-cat/send-transitions/

Chronology

We’re going to start with an overview of what may come up or change in education and social care for your young person.

14/15+

Education/EHCP

• Preparation for Adulthood planning at year 9 Annual Review
• EHCP format changes to the PfA format – unless there’s already a combined format in use. Section B categories:
  • Further ed, higher ed, employment
  • Independence and independent living
  • Community and friendships
  • Maintaining good health
• Redo outcomes to look to the future
  • Looking forward, longer term, indicate where all this support is leading
• There may be a discussion with a careers advisor
• If your young person will be leaving this school at 16 you need to be looking at next educational options now
• Opportunity to start thinking about where the young person will be by, say, mid 20s
  • It might help with what your next steps will be
  • Or which school/college will be best post 16 or post 18/19

 Social care and health care

• Nothing is likely to change
• Your young person is likely to have been referred to an adult social care tracker (in Richmond and Wandsworth) which tracks young people identified as likely to need adult social care support when they reach 18
• I would assume all Local Authorities have some way of keeping an eye on potential demand

Healthcare

• Different services have different ages for transition
• Your young person may no longer see a paediatrician and their care may revert to their GP
• Young people with learning disabilities may start having an annual health check
• Young people with LD should have this noted on their GP record – you should check

16+

Education/EHCP

• If this is the young person’s last year at their school the AR should be in the autumn term – as early as possible
• Another timely opportunity to update outcomes and / or aspirations (in Section A of EHCP)
  • Do outcomes look to the future?
  • Anyone reading this document should be able to see what all the support is aiming to achieve
• You may need to reapply for transport
• There may be a discussion with a careers advisor
• You will receive ‘phase transfer’ letter asking for your post 16 choices by about the middle of October
  • You do not need to meet that date
  • But settings will be starting to allocate their places
  • So you do need to get on with choosing your options

• Start researching potential colleges – especially important if your young person is leaving this school at 18

 Social Care

• Young person should be identified as likely to need social care when an adult – if relevant – not all young people with an EHCP will need / be eligible for adult social care
  • Official referral made – any professional – school, OT, social care
  • Nothing much actually happens
  • You should be asked for consent for the referral so if not don’t assume it has been made
• If your young person has a social care package that is agreed and all is stable their case will be held by their SEN caseworker
  • Otherwise will still be held by your social worker or may return to a social worker in the event of any changes being needed

Decision making

• Overlapping legislation – Children’s Act and Mental Capacity Act
• Technically the young person is deemed able to make their own decisions
  • If any disagreement a mental capacity assessment may need to be carried out for specific decision
  • Certainly your young person should be as involved as possible
  • Do not expect conflict
  • But be ready for professionals to treat your young person differently

 

 

 

DLA/PIP

• If the young person receives DLA you will be contacted by the DWP to establish whether they can manage their own benefits
  • Or you may become their appointee
• Young person may be invited to apply for PIP
  • This can happen anytime after their 16^th birthday but seems to be happening as a young person turns 16
  • or will definitely happen when their current DLA award ends
  • It’s not an invitation – you must apply or payments will end
• If your young person has not been receiving DLA this might be a good time to look at applying for PIP

Other benefits

• If you are receiving benefits there shouldn’t be any changes to them at this stage
• You may have to confirm that your young person is still in education post 16 to continue to receive child benefit
  • I seem to recall getting a letter
  • But you can go online using form CH297 (https://www.gov.uk/child-benefit-16-19)
• We’re going to talk about benefits your young person may be able to receive further on in the workshop

17+ 

Education/EHCP

Think about the next educational placement:

• Visit websites
• Speak to other parents
• Arrange visits

Doing this well before any decision has to be made means you can think about what you are seeing without pressure to make a decision.

Seeing colleges that you don’t think will do can be informative as well – knowing what won’t work is as important as knowing what will:

• Your LA will have their preferred options – you need to have visited so you know first hand why they won’t work
• Of course, they might work – don’t immediately discount that

You can visit on open days – often a good choice when you are looking well ahead – but also arrange visits on days when the college is in action

Colleges will probably not let you do an individual visit until nearer the time the young person is going to college

• Individual visits are time consuming for colleges so they need to limit them to young people who may well attend the college

Look early, look widely – https://natspec.org.uk/

We have run a workshop on choosing colleges – search for Colleges – Making the Right Choice – on the Ruils information hub:  https://ruils.co.uk/article/college-making-the-right-choice/

To maintain an EHCP the young person must be in an educational setting:

• This doesn’t have to mean school or college but it is likely to
• Supported internships and apprenticeships have an educational aspect so the EHCP is maintained in these settings
• Other settings that you might think are educational may not count – don’t make assumptions
  • The LA may say that the young person’s needs can be met by social care

If the EHCP ceases:

• If a young person is not going to be in an educational setting the EHCP will cease
• You can’t keep it going if the young person is not in education and has no plans to be in education
• However, it can’t cease just because there is a break if there are plans for a further educational setting
• A young person planning to go to uni should have their EHCP in place until their start date – they will not have an EHCP on any higher (ie degree and above) course
• Therapies in the EHCP are only delivered while the EHCP is active

Social Care

• It’s not a given that because your young person has an EHCP they will be eligible for adult social care (ASC)
  • Most young person with an EHCP are not eligible (or in need of ASC)
  • This is because their needs are purely educational
• You should be contacted for a social care assessment by the time your young person is about 17.5 – assuming a referral has been made
  • Contact adult social care around 17.5 if they do not get in touch with you
  • From first meeting to agreeing a package can take a few months
• The package your young person receives from children’s service – or not – will not determine what they might be eligible for once 18
  • But if nothing significant is changing it might be a good starting point
• Think about what you want a social care package to achieve before the assessment, eg
  • Accessing social activities
  • Help to manage domestic tasks
  • Going shopping
• I have some excellent guides to help you understand and prepare for the assessment
• If your young person has significant healthcare needs they may be assessed for NHS Continuing Healthcare at this stage
• If eligible their care package would become the responsibility of the NHS

 Example when Soph turned 18 I asked for:

• 3 hours 3 times a week to pick her up from school (I was picking her up as she wouldn’t go on the bus)
• 5 hours at the weekend to go out and about, shopping, social, etc
• 1 hour a week so she could access a youth club once a month
• We previously had 5 hours a week, 12 overnights a year and holiday clubs

We also had an additional 5 hours a week as there were no overnight respite options for her so we had the money to pay a carer to stay in our home with her once a month over night.

If you haven’t had other people supporting your young person so far this is a good time to think about starting:

• You may feel that you can carry on doing what you do
• But young people need to start separating from parents, close family, etc
• If they are going to need support as an adult they need to start getting used to the idea

Healthcare

• If your young person sees any specialist services make sure you are having conversations about what happens when they turn 18
• If it is not already happening expect healthcare professionals to talk to and involve your young person more
• If your young person can’t make their own healthcare decisions these will usually be taken by the relevant healthcare professional
  • But you should expect to be part of the discussion with your views – and those of your young person – taken into account
  • This is taking decisions by a BEST INTERESTS process
• If your young person can make their own decisions then they are their decisions to make
  • Even if they seem unwise
  • Ideally your support will help them make wise decisions
• If your young person continues to have an EHCP then therapies specified in this will continue
  • There may be some practical issues with a change of placement in who delivers, how and where but the young person remains entitled to the provision in the EHCP
  • Early discussions with the new setting are essential
  • Your SEN Caseworker is the person who needs to make arrangements if necessary
• Schools and colleges may well have block commissioned therapies and this might be true of the new setting
  • If not different arrangements will need to be made
  • In theory if suitable support can’t be arranged at the new setting you could ask for a personal budget to pay for therapy directly
  • I don’t know of any families who have done this so can’t say how well it might or might not work
  • You may well have to decide if the fight to continue with therapies is worth the effort

CAMHS – will NOT see your young person once they have turned 18

• If an alternative plan is not in place then your GP will become responsible

GP – changing GP is a big step but having a sympathetic GP can be a real asset

 Therapies

• You can refer your young person to Your Healthcare
• They will do their own assessment and offer therapy where they feel it is needed
• Therapy is less likely to be long term
• The NHS is set up to assess, provide therapy and then move on
• You can re-refer but it is likely that a period of therapy will be delivered and then it will stop

 18+

Education/EHCP

• You definitely need to prioritise researching post 18 or post 19 educational or alternative provision, eg supported internship
• The young person’s EHCP will continue unless the young person leaves education or goes to university
• The EHCP review will be in the autumn term of the young person’s last year at the school
• Refer to the education section of 17+ above
• We’ll talk about university below
• Post 18/19 provision may not be 5 days a week, 3 days a week is not uncommon

The SEND Code of Practice has this to say:

Where young people have EHC plans, local authorities should consider the need to provide a full package of provision and support across education, health and care that covers five days a week, where that is appropriate to meet the young person’s needs

 What this means is that you have the backing of the CoP to work towards getting a 5 day package which could include education, volunteering, work experience, etc and some of it may be funded by social care rather than education and can be at more than one provider.

• A young person with an EHCP may need longer in education or training to achieve their outcomes
• There is no absolute right to remain in education until 25
• LAs will want to see that the young person has opportunities for progress rather than a repetition of previous learning

 Social care

• The new package should be in place if the young person has been assessed and is eligible

Adult social care assessment:

• Ideally this is carried out before a young person turns 18 but it can be done anytime after
• Not all young people with a need for educational support will be eligible for adult social care
• They need to have an eligible disability
• Support needs in at least 2 out of about 8 daily living activities
• eg, personal hygiene, managing a habitable home, dressing appropriately, accessing the community
• And if these needs are not met it will be detrimental to the young person’s wellbeing

A young person is offered a package based on where they are living and the support they currently receive.  If a young person moves into supported living, for example, then their support needs will be reassessed.

We have a few documents about preparing for the Care Act Assessment on the information hub under Adult Social Care:  https://ruils.co.uk/article-cat/adults/

If your young person is not deemed to have needs under the care act then you are on your own:

• Social care will not pay for support
• Your young person cannot access supported living or independent living
• Residential care would be self-funded

Healthcare

Young people should receive most of their healthcare via universal services, ie the same way as everyone else does.

If they need specialist services the local organisation providing those services on behalf of the NHS is Your Healthcare (in Richmond and Kingston).

They will talk to you before your young person turns 18 – but they can’t provide services until the young person is 18 and the services provided do vary a little depending on your borough.

If your young person has a diagnosed (or at least recognised) learning disability this should be stated in their records.

Young people with LD should be invited for an annual health check and this may be preceded by a comprehensive health check form.

The NHS must make it as easy for a disabled young person to use health service as it is for people who are not disabled.   This can mean reasonable adjustments such as:

• A carer being present
• Longer appointment time
• Quiet space available to wait

Your young person may not be entitled to free prescriptions or dental care once they turn 19:

• Having a disability or being in education are not enough on their own to entitle a young person to free prescriptions and dental care
• There are exemptions and options to reduce cost: https://ruils.co.uk/article/help-with-nhs-healthcare-costs/

Consenting to treatment

• If a young person is deemed to have the capacity to make a decision about their healthcare then it is their decision to make
• If they do not have capacity to make the decision then the lead healthcare professional will make the decision after a best interests process that should include you

University:

If a young person goes to uni their EHCP does not go with them!  It ceases on the day they start their course (although the LA may try to cease it before that)

• Indicate that they have a disability on their UCAS form
  • which will trigger the opportunity to apply for a disabled students’ allowance – an allowance that funds additional costs because of their disability
  • Evidence of disability – GP, consultant, professional assessment if specific learning disability
• If they need social care at university this is funded by adult social care so an assessment will be needed in plenty of time
• Essential to do diligent research about the university and the course
  • Beyond course content
  • Is the uni spread out, different campuses?
  • Field studies
  • Support groups available, socially
• Essential to speak to the learning support department
• I have excellent documents about going to uni, the disabled students’ allowance, etc: https://ruils.co.uk/article-cat/university/

 

Now we come onto topics that are not quite so age related – although some actions can’t be taken until a young person has turned 18 you should be thinking about them now.

 Mental Capacity

• When a young person turns 18 parents no longer have an automatic right to make decisions on their behalf
• In practice parents will mostly continue to be the people making decisions where the young person cannot do so
• If there is no PoA or deputyship ALL decisions MUST be taken as part of a BEST INTERESTS process
  • This means all interested parties discuss and agree (hopefully)
  • For health decisions the final decision will be taken by a health professional
  • You should always be involved
• A young person does not HAVE or NOT HAVE capacity as a blanket status
  • Capacity is decision and time specific
  • So, a young person may be able to make some decisions for themselves but not others
  • If they have a fluctuating condition they may be able to make a decision at some times but not at others

We have information about mental capacity and assessments on our information hub:  https://ruils.co.uk/article-cat/mental-capacity-act/

You might hear scare stories about local authorities taking over decision making for your young person and cutting family out.

These are just that – scare stories.  While LAs may sometimes become the responsible authority for a disabled young person it is:

• Not common
• Not easy – they have to apply for deputyship
• LAs don’t want or have the capacity to take it on

Guardianship

There is no concept of a young person having a guardian once they turn 18.

A person might be recognised as a ‘responsible person’ for some processes, eg during a mental capacity act assessment .

If you have a Power of Attorney or deputyship you are that responsible person.

 

Wills, Trusts, Deputyships, LPAs, Appointeeships:

• Make a will
• Create a discretionary trust or disabled persons trust
  • This can be in your will, or
  • Possibly a living trust if there are grandparents or other people who might leave money directly to your young person
  • or even yourself – pensions, for example, are not passed on through your will
  • Avoid leaving a vulnerable young person a lot of money or property/assets
    • Benefits stop
    • Vulnerable to scammers
  • Use a specialist firm

 Power of Attorney or Deputyship?

• PoA possible if a young person has capacity to understand that they are giving you their authority to manage or help with managing their financial affairs
• The situation can be explained in simple terms – it doesn’t have to be complicated
• You can apply for a PoA for financial and health online
  • DO NOT fudge the capacity issue
• Financial PoA can be used as soon as it is granted
• A health PoA does not give you the right to make health related decisions on behalf of your young person
  • You can only make decisions for them when they do not have capacity
    • eg when sedated during an operation
    • if they have mental health problems that leaves them unable to make decisions at times and a decision can’t be delayed

 The alternative is a Court of Protection Deputyship

• A deputyship is only an option if your young person DOESN’T have capacity
• Avoid a deputyship
  • You probably don’t need it!
  • Still very hard to get a personal welfare deputyship
  • 50+ page application, takes about a year, ongoing responsibility
• If you are the DWP appointee for your young person you can manage their benefits
  • We have information about being a DWP Appointee on our information hub

We have information about Wills, Trusts, Deputyships and Power of Attorney on our information hub:  https://ruils.co.uk/article-cat/future-planning/.  If you are unsure about the difference between deputyship and PoA do have a look at the LPA or Deputyship document.

Benefits

PIP – not means tested

• After turning 16 any DLA renewal will mean applying for PIP

Universal Credit (UC) – means tested, income replacement benefit

• This is the main income for our young people when they have left education
  • If not working or on a low income
• Picture of whether students can get UC is mixed
• If they are deemed to be ‘receiving education’ then they can’t claim UC

Receiving education

• A qualifying young person (remember, this is someone aged between 16 and 19 (up to the September after their 19^th birthday) and in non-advanced or approved training for more than 12 hours per week)
• On a course that is classed as full-time, advanced education
• On any course where a loan or grant is provided for maintenance
• On any other course that is incompatible with the work search requirements associated with a Universal Credit claim

This makes it difficult for 16-19 year olds to claim UC and for students on a degree, or equivalent course of study.

Young people still in education 19+ should be able to claim UC as long as:

• They are not on a degree course or equivalent, ie non-advanced education
• They will be deemed to have a LCW or LCWRA

If the young person has a LCW or LCWRA then their course is not incompatible with work requirements because they won’t have any work requirements – or if they do they will be manageable around their course.

A student planning on continuing in education after school would have to establish a LCW before they started the course:

• The catch is that they have to have a WCA BEFORE they start their course of education and it must deem them to have a LCW or LCWRA
• They must be in receipt of PIP (or DLA)
• The application for UC would usually trigger this
• But an application for UC would be turned down because the young person is ‘receiving education’
• Contact recommend making a ‘new style ESA credits only’ claim which won’t result in any money being paid but will trigger a WCA
• You can do this any time after they turn 16
  • We recommend you do it as soon as they turn 16 to have it ready for when they leave their current school
• You may have to persevere – some parents are just told NO
• If you get this while the young person is still at school they will be able to claim UC when they finish school even if they are going on to another educational setting
• Even with an LCW status young people still in school cannot claim UC – they have to wait until they finish at their current educational setting

University students:  If a student has the LCW status before they finish school and start university they can make a claim for UC but you should be aware that the student maintenance loan counts as income and is likely to wipe out – or almost wipe out – any UC payment.  It may still be worth applying though as the young person is only considered to have the student finance loan for about 9 months of the year – ie when actually at university – so they may be able to claim for holidays.

Caveat:  if you are on benefits yourself and your young person makes their own claim (except for PIP) they will not be considered your dependent and any benefits you receive for them will stop.  You should take advice as families are not always better off with a young person claiming their own benefits.

 

Child Trust Funds:

• Mixed picture here – some institutions will release funds with enough evidence that your young person cannot manage them themselves
• Others require a Court of Protection order
• If there’s over £6000 in the fund it will affect a young person’s entitlement to benefits
  • you can spend the money to get their savings below thresholds for Universal Credit
  • But do it carefully – expenditure must be justified

 

Council Tax

When a young person turns 18 they are included in the council tax calculation and any discounts you receive may be affected.  You should have a look at your council website to determine what discounts, if any, you might be entitled to.

Some people are exempt from the council tax calculation, eg students or people with severe mental impairment.  Carers can also be exempt if they are providing more than 35 hours of care a week and the person they care for is in receipt of PIP daily living component.

So, for example, if there are 3 adults living in your home but 2 of them are exempt that would reduce your council tax liability by 25%.  If everyone in the home was exempt that’s a 50% reduction.

 

Living independently

Supported Living:

• This is where the home and the care package are ‘entwined’
• Young people who need a significant amount of support
  • eg 24/7; 30 hours a week
• LA organised or parent commissioned
• In general young people offered supported living will have at least a moderate learning disability or ASD
• In general, and certainly locally, this would not be the right cohort for an able young person without an LD, for example

Independent living in the community:

• Slightly different set up for more able young people who need a few hours a week of oversight or help but can’t manage entirely on their own
• Sourcing a home through the housing register or private renting
• Supported by adult social care – ‘floating’ support or outreach

Residential Care

• Some young people will opt for residential care
• This is where the accommodation and care package are a single package
• You’d expect most services to be provided
• Young people will have to contribute most of their benefits towards their package, retaining a personal expenses allowance of about £30 per week (currently)

Big topic

• We have a supported living parent group
• Run workshops about supported living 2 or 3 times a year

Regardless of supported or independent, the young person must be:

• Eligible for adult social care
• Social care assessment to provide the necessary support
• This can vary from a few hours a week to 24/7

LA organised (Supported Living)

• Where there are spare rooms in existing houses the LA and the care provider will assess and offer a place if deemed appropriate
• May have flats in a block or a converted house for more independent young people
• No obligation to accept but don’t turn it down for minor reasons
• Essential not to accept a place just because
• Rent and eligible charges paid for via Housing Benefit
• Technically can provide housing for a group of young people but a bit of a new departure for the LA so we don’t know how well it will work out

Parent commissioned (Supported Living)

• A lot of work but you commission – along with other parents – the care provider and housing provider
• LA still assesses for social care package
• Rent and eligible charges paid for via Housing Benefit

Housing benefit (Supported Living)

• Pays for rent plus eligible charges
• Is affected if a young person has an income – from work or otherwise
• Won’t lose HB but it will reduce

Young people living independently in the community will probably have their rent and eligible charges paid by the housing element of UC but they will have utilities bills to pay.

If they are working but on a low income they will still be entitled to UC and support with their rent but the amount they receive will be reduced.

Free prescriptions/dental care/sight tests

Once a young person turns 19 they are not automatically entitled to free prescriptions, dental care, sight tests, etc

There are exemptions but being disabled and / or in full time education are not exemptions.  Information and links here:  https://ruils.co.uk/article/help-with-nhs-healthcare-costs/

A young person is likely to be able to get help with costs even if not entitled to full help and the assessment is means tested.

 

What do young people do when no longer in education?

• There are options
• Likely to be a patchwork
• Even if a young person is working if it’s not full time they will need things to do on days they are not at work
• Parents and care staff will have to work together to research options and create a schedule
• Lot of local organisations providing social activities
  • Throughout the week
  • At weekends
  • Holiday schedules
• RHACC offers ongoing study – cooking, drama, art
• Young people can access mainstream courses if they are able to
• I have a parent group on this topic
• Essential to have the social care assessment to see if the young person is eligible for support