Guardianship – a parent’s experience
Karen’s son is 18. She was granted guardianship for both finance and health and welfare
“The first thing to be aware of is how long and drawn out the process is. We were told that beforehand, and the lawyer kept us informed, but it still felt a long time.
I’d sat in on Zoom sessions on guardianship and I had notes to refer back to, so I didn’t come to it cold, but there were still things we weren’t really prepared for.
We started 6 months before my son’s 16th birthday, so it was during the backlog after Covid and we got caught up in the system. And to be fair, part of the problem was down to us: there was lots of paperwork, it wasn’t easy to understand, and you tend to push it to one side. Formal paperwork isn’t going to be a priority when there’s too much else you have to think about.
The lawyers chased us eventually, but it meant things took more time than we thought.
We chose a lawyer with a good reputation locally for guardianship applications, and they started by suggesting we apply for health and welfare powers as well as finance. We made a change to the standard application, by adding in lines that gave us the right to access what my son watches and restrain him in certain circumstances to keep him safe.
The process was pretty straightforward. The Mental Health Officer met my son at home first, then visited school to see him there. Two people, I think consultant psychologists, assessed him over Zoom to prepare their reports. That was OK for us, but I’m not sure how well it would work for someone who doesn’t have my son’s level of functioning.
I thought once guardianship had been granted that would be it wrapped up, but I was surprised there was still so much to do. Everything had to go through the Office of the Public Guardian, which took more time. And it will have to be reviewed in 3 years.
We have to keep records and audits for everything so we can account for how we spend his money and the decisions we take. I’m not sure people are always prepared for that.
Having the right powers has been useful, as my son needed a hospital procedure a few weeks ago and they asked if we had health and welfare – without it, we couldn’t have been involved in his treatment and care.
But I was surprised it proved so hard to register my guardianship with the bank. They couldn’t take the papers in person at the branch, it had to be done online or by phone, and when I called I was told I didn’t have the right powers. I went back to the lawyer, who assured me the bank was mistaken. The next member of staff I spoke to accepted it without question.
It’s not exactly unusual – so you’d have thought customer service staff should be aware.”
Paid work possible? Absolutely!
Twin brothers Stuart and Matthew have Fragile X syndrome – a genetic condition that causes learning disabilities.
Neither can read or write well, and they can struggle with anxiety when things are unexpected or unpredictable. But finding full time paid work was always the goal, as dad Craig explains:”We could picture them in the right kind of work,” he says. “Routine, manual, regular, with the right setup. We just didn’t know what that might look like.”
As it happens, both have ended up working in the same place, but in very different jobs.
From college Stuart was offered a place by Project Search, which provides employment and learning opportunities for young people with a learning disability or autism. Matthew stayed on in college for a further year.
“We were disappointed at the time,” Craig admits. “But on reflection, it was the best thing that could have happened, as they went from being twins who did everything together to independent young men leading their own lives.”
Stuart had work experience at Borders General Hospital through Project Search, then with charities in Galashiels before joining Green Works, a social enterprise providing gardening services, as a volunteer.
By now Matthew had also been accepted by Project Search, although practical work placements had to be replaced by online learning because of Covid.
“Matthew was up every morning, taking classes on the laptop,” says Craig. “I had no idea he was able to do that. The pandemic was harder for Stuart, as there wasn’t much he could do until the world opened up again.”
Through Project Search, Matthew found work at a local hotel, where he has now worked for 3 years as a kitchen assistant. One of a team of around a dozen porters and chefs, he works rotas and shifts, including nights and weekends. His parents help him keep track of his rotas.
Before he began, Craig offered to speak to the staff team about Fragile X, to help them understand Matthew better. It was the start of a positive relationship that, 18 months ago, led to Stuart joining too as a member of the gardening team. Unlike Matthew, his hours are fixed. Craig’s connection with the staff means he can keep an informal eye on how things are going, which he describes as “creating an invisible bubble around them”.
Both Matthew and Stuart are full time, permanent employees on the same basis as everyone else on the staff. They have the same rights and entitlements, are members of the company pension scheme, and regularly socialise with their colleagues. Mostly they make their own way to and from work, and their confidence has grown.
“With the boys, you get totally reliable workers who are conscientious, love routine tasks, work hard and are fun to be around,” Craig says. “They have greater self esteem, they’re financially independent and they are more mature. They get up in the morning, come home tired at the end of the day, and are paid for what they do. Just like everyone else.”
· Chat to your young person about work in general, not specific jobs.
· Make a list of their strengths and what they have to offer.
· Focus on what they can do, not what they can’t.
· Take small steps that build confidence gradually, and be patient – developing skills takes time.
· Look for chances to try new things, e.g. volunteering or lending a hand.
· Remind them it’s normal for some things to not work out – it doesn’t mean you’ve failed.
· Don’t be afraid to approach possible employers, and offer your own suggestions for how things could work.
Benefits and Entitlements (test)
This is about the financial help you can get.
Benefits and entitlements change when someone turns 16. Working out the best options for your family as a whole can be a challenge. Call the free confidential Contact helpline, or speak to other specialist welfare or disability advisers, to make sure you don’t miss out.
Most benefits and entitlements come from one of three sources:
- The UK government (through the Department of Work and Pensions or DWP, and as child benefits or tax credits through HMRC)
- Scottish Government (through Social Security Scotland for devolved benefits such as Adult Disability Payment, Child Disability Payment and Carer Support Payment)
- Local government (through your council).
For more information on benefits or financial support check the useful links on the right or call the Contact helpline on 0808 808 3555. Say you are calling from Scotland and an adviser will arrange a time to call you back.
How things change at age 16
From the 16th birthday, the benefit system views a young person as an adult.
They are expected to claim and manage benefits themselves and have these paid into a bank account in their name. If your young person needs help to do this, you can apply to be their appointee – if they agree, you can act on the young person’s behalf.
Find out more about your rights and responsibilities as an appointee.
Child Disability Payment (CDP) has replaced Disability Living Allowance (DLA) in Scotland
Child Disability Payment is a new benefit introduced in Scotland to replace new claims for Disability Living Allowance (DLA).
For the most part, the qualifying rules for Child Disability Payment are identical to DLA . Your child must also be under 16 to be able to claim the Child Disability Payment. Once a young person on Child Disability Payment turns 16, Social Security Scotland will write to tell them that they can claim Adult Disability Payment instead if they’d like to. Alternatively, they can stay on Child Disability Payment until they are 18 and delay making a claim for Adult Disability Payment.
Find out more about Child Disability Payment and special rules.
Note to Susan: the following sections are new and may need new pages or Anchors. Do feel that most of this is key info to be read in context of transition.
Adult Disability Payment (ADP)
ADP is replacing Personal Independence Payment (PIP) for disabled adults aged 16 and over in Scotland. This new benefit is rolling out across Scotland. It will take until 2025 to move everyone’s benefit across. The date you are given for the transfer will usually depend on your review date for PIP. Visit Personal Independence Payment is moving for progress on changes.
ADP has already replaced new claims for PIP in all parts of Scotland. It isn’t means tested and will continue if someone starts work.
Initially, ADP will have very similar rules to PIP. But the Scottish Government intends to carry out a full review of the benefit.
If your child is 16 or over and does not already get:
then they won’t be able to make a new claim for PIP (or DLA or Child Disability Payment). They will need to claim Adult Disability Payment instead.
Existing Child Disability Payment claimants
If your child gets Child Disability Payment, they will not be automatically transferred onto Adult Disability Payment. Instead, you or your child will have to make a claim for Adult Disability Payment at some point between their 16th and 18th birthday.
When your child is approaching the age of 16, Social Security Scotland will write to you asking if they need an appointee to manage their benefits. Social Security Scotland will explain that they have the option of making a claim for Adult Disability Payment once they turn 16. They don’t have to do this. If they prefer, your son or daughter can choose to continue to get Child Disability Payment, and claim at a later date. They can claim Adult Disability Payment at any point while they are 16 or 17.
Avoiding a gap in payments
However, they should try and make sure they claim before they turn 18. This is so they can avoid any gap in their disability benefit payments.
So long as your child makes a full application for Adult Disability Payment before their 18th birthday, their existing Child Disability Benefit payments can continue temporarily until a decision has been made on their Adult Disability Payment claim. (A full application means they have completed and submitted both part one and part two of the claim form.)
However, if they have not submitted a full claim before they turn 18, their Child Disability Payment will stop on their 18th birthday. They can still claim Adult Disability Payment after they turn 18, but they won’t receive any Child Disability Payment while they are waiting for a decision.
If your child chooses to claim Adult Disability Payment before 18 but they are refused this benefit, they will continue to receive Child Disability Payment up until their 18th birthday. They can also re-apply for Adult Disability Payment at any time, despite the fact that their earlier claim was unsuccessful.
How to apply for Adult Disability Payment Could link to Contact section on this with Anchor?
You can apply online by registering and setting up an account with Social Security Scotland How to apply for Adult Disability Payment – mygov.scot or by phone on 0800 182 2222
If you’re a British Sign Language user, you can use the Contact Scotland service to get in touch with Social Security Scotland.
If your young person is unable to apply themselves you can get someone to help apply for ADP.
A family member
A carer, support worker
You can also get help via Social Security Scotland from an independent advocate or free local delivery service for person to person support.
For further information on Adult Disability Payment and rules, visit Adult Disability Payment & disability benefits at 16 (contact.org.uk)
Existing PIP claimants – this section is key to understanding the changes PIP/ADP
From 2022, working age adults in Scotland who already get PIP began to transfer over to Adult Disability Payment. Transfers will continue until 2025.
The date you’re likely to be transferred will usually depend on your review date for PIP. You’ll be fast-tracked if any of the following apply:
There’s been a change in your condition since 29 August 2022.
You’re due a PIP review.
Your PIP award is about to end.
How will the transfer from PIP happen?
A disabled adult transferred from PIP to Adult Disability Payment will have their award moved over automatically to the new Scottish benefit. There will be no change in the amount they get or their payment dates. They won’t have to make a claim for Adult Disability Payment, and they won’t need to go through a re-assessment.
Once Social Security Scotland selects your adult child for transfer to Adult Disability Payment, they will write to them (or you if you are their appointee) confirming their intention to transfer their award. The transfer process will normally take three-four months (one month for the terminally ill).
During this “transition period”, your adult child will get PIP as normal. Usually, you will not need to do anything, and your child’s award will transfer automatically. In a few cases, Social Security Scotland may need to contact someone to confirm that personal details are correct.
Once the transfer onto Adult Disability Payment is complete, Social Security Scotland will write to you or your child confirming this. They will explain the rate of the daily living and mobility components they will get (usually the same as they were getting for PIP). The letter will explain when their PIP award ends and when their Adult Disability Payment starts. It’ll also specify the date their new Adult Disability Payment award will be reviewed.
Once your child is on Adult Disability Payment, you should make sure to tell any offices paying them other benefits or providing them with services, such as the Blue Badge, that they are now getting Adult Disability Payment.
If you manage your adult child’s PIP as their appointee, Social Security Scotland will want to review your appointment after your child has transferred to Adult Disability Payment.
This is because there are some differences between the law in Scotland and the rest of the UK about appointees.
Possibly a new section
Adult Disability Payment and Motability
Where a disabled adult moves from PIP to Adult Disability Payment they will receive the same rates of Adult Disability Payment as they got from PIP. However where a child moves from Child Disability Payment to Adult Disability Payment it’s possible that their award may change.
If your child previously got the higher rate mobility component of Child Disability Payment but doesn’t qualify for the enhanced rate of the mobility component under Adult Disability Payment, they will no longer be eligible for the Motability Scheme.
Motability Operations Ltd will be in touch to arrange for the vehicle to be returned. However, you may also be eligible for a package of transitional support, as long as you return the vehicle to the dealership in good condition and by the agreed date. The transitional support available depends on when your child first joined the scheme.
Further details below or could link these options to Contact – Anchor to mobility section? Adult Disability Payment & disability benefits at 16 (contact.org.uk)
Joined before 2013
You have two options. You can either:
Choose to keep the vehicle for eight weeks (starting from the day of your last mobility allowance payment) and receive a £2,000 transitional support payment. You must return your car within eight weeks, in a good condition.
Choose to keep the vehicle for 26 weeks and receive a reduced transitional support payment of £500. You must return your car within 26 weeks, in a good condition.
Joined during 2013
You have two options. You can either:
Choose to keep the vehicle for eight weeks and receive a £1,000 transitional support payment. You must return your car within eight weeks, in a good condition.
Choose to keep the vehicle for 26 weeks and receive a reduced transitional support payment of £250. You must return your car within 26 weeks, in a good condition.
Joined since 1 January 2014
If you joined on or after 1 January 2014, you can choose to keep your vehicle for eight weeks and receive a standard £250 ‘Return to Dealer’ payment.
You must return your car within eight weeks, in a good condition. As well as one of the above transitional support package options, you have the option of buying the vehicle outright.
Carers Support Payment / Carers Allowance
Carer’s Allowance is the main benefit for someone (aged 16 or over and not in full time education) looking after a disabled person. Many parents of disabled children and young adults qualify.
You might get it if you provide a certain amount of care to a child receiving particular disability benefits.
In Scotland, a new benefit called the carers support payment will replace Carer’s Allowance. This new benefit is being piloted in specific parts of Scotland before being rolled out more widely across Scotland from Spring 2024. If you get Carer’s Allowance and live in Scotland, you do not need to apply for Carer Support Payment. Your benefit will move to Carer Support Payment. This is planned to happen between February 2024 and spring 2025. For more details visit our Contact Carers Allowance Page Carer’s Allowance | Contact
Universal Credit is a benefit for people of working age to help with living costs. You might be able to claim Universal Credit to top up your earnings, or if you’re out of or unable to work.
Your young person may be able to claim this in their own right as a young disabled adult from the age of 16, but you should check with a benefits adviser to see if this is the best option for your family as it may affect other benefits you receive.
Claiming Universal Credit in education
Most people receiving education cannot claim Universal Credit unless they have a dependent child.
There are three main groups of students who may still be able to get Universal Credit in education. These are:
- Certain groups of students who are exempt from the normal restrictions. This includes any student with a dependent child and some disabled students who meet specific tests.
- Part-time students.
- Some young people who remain in non-advanced education beyond the August after their 19th birthday.
The rules are extremely complex. Some families are better off if they claim for their child as a dependent, but for others it’s better if the young person claims universal credit in their own right. We suggest you read our Contact Universal Credit for young people receiving education webpage Universal Credit for young people receiving education (contact.org.uk) or call our free helpline for detailed advice.
Young people can claim online Universal Credit: How to claim – GOV.UK (www.gov.uk)
The impact of your young person moving into work can be far reaching.
If a young person is moving into any kind of paid work, even if they are still in education, it’s worth speaking to an adviser as the benefits rules are complicated.
Finance and education.
Self directed support and PIP ADP should continue when young people move into further or higher education. Young people receiving PIP ADP can claim universal credit while in education, but in practice it can be complicated and may be affected by any student grants or loans. Most will have to wait several months to complete the medical assessment to establish fitness for work, and are unlikely to be paid during this time. The Contact helpline or another benefits advice service can tell you more about this.
Find out more about financing education and living away from home. This should link to the changes Tracey made
This will usually be paid up to age 16. It may continue up to age 19 if the young person is still in full time non-advanced education, but will stop if they enter a work placement programme or higher education. The rules can be complicated, so it’s best to seek advice.
Appealing a decision
If you’re unhappy with a decision about benefits you can ask for a “mandatory reconsideration” within a month of the decision date. If you’re still unhappy after the revision you can appeal to an independent tribunal in writing, again within a month. Late appeals may be accepted, but this isn’t guaranteed. It’s useful to involve a support worker, benefit adviser or voluntary organisation to get help with preparing an appeal.
Launching a business with the ILF Scotland Transition Fund
Cait is a baker from Dumfries and Galloway. She applied to the ILF Scotland Transition Fund to help start her baking and chocolate business. Since receiving support, Cait – who has autism – has become more independent and has improved her confidence.
The money Cait received was used to purchase all of the baking equipment she needed to start her business, including a food mixer, baking tins and chocolate moulds.
“Receiving the funding helped me to be more independent, mainly not relying on my parents for financial support all the time. It boosted my confidence, because if I needed to buy something I could just go and do it. I was making my own decisions and not relying on other people to help. Also, as I was busier, I was meeting more people face to face in my community and this helped my confidence a lot.”
Cait now supplies cakes and chocolates to a number of private customers and will soon be supplying local businesses. She plans to expand her business in the future and hopes to one day open her own café.
“Don’t be afraid to apply for support to try something new. The people at ILF Scotland are very helpful. It’s easy to apply to the Transition Fund – you just need to fill out a form and send it off. The sooner the better if you have an idea and need some financial help. Good luck!”
Child Trust Funds
Child Trust Funds (CTF) came of age in 2020 when the first generation of child trust fund account holders, born in 2002, reached the age of 18 and were able to start managing their money. Children born between September 2002 and January 2011 received £500 in government vouchers as an incentive to join the scheme. However there has been limited consideration across the UK regarding what would happen if children lacked the mental capacity to manage their finances and access their accounts upon turning 18. In Scotland, if someone is incapable of managing their finances, you can apply to the Office of Public Guardian to access specified funds on their behalf through the Access to Funds Scheme (ATF). A person or organisation authorised under this scheme is referred to as a withdrawer.
The fee for ATF applications related to the closure of a CTF account will be waived. Applications can be made to the Office of Public Guardian provided that the account holder is habitually resident in Scotland. Before making an application, applicants should contact a member of the ATF team on 01324 677140 or via email at OPGATF@scotcourts.gov.uk to discuss their individual circumstances. Further information on the Access to Funds Scheme can be found on the Office of the Public Guardian Scotland website.