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://www.ruils.co.uk/article-cat/send-transitions/

14/15+

• EHCP format changes to the PfA format
  • 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 yp will be leaving this school at 16 you need to be looking at next educational options
• 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 LAs have some way of keeping an eye on potential demand

16+

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
• There may be a discussion with a careers advisor
• Start researching potential colleges – esp important if your yp is leaving this school at 18
• 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

Social Care

• Young person should be identified as likely to need social care when an adult – if relevant – not all yp with an EHCP will need 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 yp 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

Decision making

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

 DLA/PIP

• If the yp 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
  • or will definitely happen when their current DLA award ends
  • It’s not an invitation – you must apply or payments will end
• If your yp has not been receiving DLA this might be a good time to look at applying for PIP

17+ 

Social Care

• It’s not a given that because your yp has an EHCP they will be eligible for adult social care
  • Most yp 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 yp 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 yp 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

 For 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 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

Education

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://www.ruils.co.uk/article-cat/send-transitions/

To maintain an EHCP the yp 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 yp’s needs can be met by social care

If the EHCP ceases:

• If a yp is not going to be in an educational setting the EHCP will cease
• You can’t keep it going if the yp 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

Healthcare

• Nothing changes at 17 and for most young people nothing much will change when they turn 18 either
• If it is not already happening expect healthcare professionals to talk to and involve your young person more
• If your yp 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 yp – taken into account
  • This is taking decisions by a BEST INTERESTS process
• If your yp 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 yp 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 yp 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
• If your young person is receiving treatment or therapy that you would expect to be ongoing past 18 now would be a good time to discuss future plans with your GP, consultants, etc
  • Some NHS services may continue past 18, others won’t

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 yp 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+

Social care:  new package in place if assessed and eligible

Education:  definitely need to prioritise sorting the next educational setting

EHCP:  will continue unless the yp leaves education or goes to university

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 yp turns 18 – but they can’t provide services until the yp 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.

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

University:

If a young person goes to uni their EHCP does not go with them!

• 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 an excellent document about going to uni, the disabled students’ allowance, etc

 

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.

 Social Care

Adult social care assessment:

• Ideally this is carried out before a yp 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.

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

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
• 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.

Guardianship

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

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 yp 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 yp you can manage their benefits
  • We have information about being a DWP Appointee on our information hub

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 yp 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 yp 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
• You may have to persevere – some parents are just told NO
• If you get this while the yp is still at school they will be able to claim UC when they finish school before starting their degree or other college course
• Even with an LCW status young people still in school cannot claim UC – they have to wait until they finish at school
• They can claim UC from the September after they finish school/their course even if they are going on to another educational placement
• As long as it is non-advanced and they will be deemed to have a LCW or LCWRA

UC work status:

• We do have capacity – so will be able to claim UC but will have significant conditions attached to the claim
  • ie demonstrating that we are actively looking for work
• We have limited capacity for work – can claim UC and will have fewer conditions attached to the claim
  • Likely writing a CV, meeting with our job coach
  • Probably no onus on us to actually look for work
• We have no capacity for work – can claim UC with no conditions attached to the claim and will be eligible for an additional payment

 Young people who are able to work can do so – in either group

• Their UC will taper off

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 yp is only considered to have the student finance loan for about 9 months of the year – ie when actually act university – so they may be able to claim for holidays.

Child Trust Funds:

• Mixed picture here – some institutions will release funds with enough evidence that your yp cannot manage them themselves
• Others require a CoP order
• If there’s over £6000 in the fund you need to deplete it asap
  • But do it carefully – expenditure must be justified

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

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.

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