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.”

Benefits & Finance (test)

Benefits change when someone turns 16.

For more information on benefits and financial support, check the useful links on the right or call the Contact helpline on 0808 808 3555. Say that you are calling from Scotland and an adviser will arrange a time to call you back.

Most benefits and entitlements come from one of three sources:

• The Scottish Government’s Social Security Scotland for example Adult Disability Payment, Child Disability Payment and Carer Support Payment.
• The UK government’s Department of Work and Pensions (DWP), for example child benefits or tax credits through HMRC.
• Local government, your council.

How things change at age 16

From their 16th birthday, the benefit system views a young person as an adult.

Young people can 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 and act on the young person’s behalf. 

Find out more about your rights and responsibilities as an appointee.

Child Benefit

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. It is best to seek advice because each individuals circumstances will be different.

Child Disability Payment

Child Disability Payment (CDP) has replaced Disability Living Allowance (DLA) in Scotland.

The Child Disability Payment has similar rules as DLA. When a young person turns 16, and they are claiming Child Disability Payment, Social Security Scotland will write to the young person to tell them that they can claim Adult Disability Payment. However young people in Scotland can stay on Child Disability Payment until they are 18 and do not have to claim Adult Disability Payment at 16.

Find out more about Child Disability Payment and special rules.

Adult Disability Payment and Personal Independence Payment

The Adult Disability Payment (ADP) is the new benefit in Scotland for adults, and will replace the Personal Independence Payment (PIP). This process started in summer 2022, but it will take until 2025 to move everyone’s benefit from PIP to ADP. If your young person is already claiming PIP the DWP and Social Security Scotland will move the benefit for you. Please visit Personal Independent Payment is moving – mygov.scot for more information.

If your child is receiving Child Disability Payment, you or your child will have to make a claim for Adult Disability Payment between their 16th and 18th birthday. More information about this can be found on the Child Disability Payment section on the Contact website. 

You can apply online by registering and setting up an account with Social Security Scotland. Visit How to apply for Adult Disability Payment – mygov.scot or 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 they can get someone to help them apply for ADP. You can apply to be their appointee and act on their behalf. You can also get help via Social Security Scotland from an independent advocate or free local delivery service for person to person support.

Find out more If you need help from Social Security Scotland – mygov.scot

For further information on Adult Disability Payment and rules, visit Adult Disability Payment & disability benefits at 16 (contact.org.uk)

If your young person is already claiming Personal Independent Payment (PIP) and you would like more information about transferring from PIP to ADP, the transition period and what happens if you are applying as an appointee, visit the Contact website: Existing PIP Claimants ANCHOR HERE

Adult Disability Payment and Motability

For more information on the eligibility of the Motability Scheme when moving to ADP, visit the Contact website: ADP and Motability ANCHOR HERE

Carers Allowance and Carers Support Payment 

Carers Allowance is the main benefit for carers. You might get it if you provide a certain amount of care to a child receiving particular disability benefits. Find out more about Carers Allowance. LINK TO CONTACT WEBSITE CARRS ALLOWANCE PAGE

In Scotland a new benefit called the Carers Support Payment will replace Carers Allowance. This process will start spring 2024. You do not have to apply for the new benefit – you will be moved to Carer Support Payment automatically. This will be happening between Spring 2024 and spring 2025.

Universal Credit

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 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

It is also important to seek advice on the rules around claiming Universal Credit if your young person is in education. For more information on eligibility and the different scenarios to consider, please see the Contact website pages on universal credit in education. ANCHOR LINK TO CONTACT PAGE

Finance and education

Self-directed Support and ADP should continue when young people move into further or higher education. Young people receiving ADP can claim universal credit while in education, and again it is best to seek advice because each young person’s circumstances will be different and it  may be affected for example by 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. 

Child Benefit – MENTIONS SEEKING ADVICE BUT WHERE FROM?

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’s story

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.