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.”

Read more about: Paid work possible? Absolutely!

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.

Read more about: Benefits & Finance (test)

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!”

Read more about: Launching a business with the ILF Scotland Transition Fund

Workshop handouts

These handbooks detailing local services and support were produced for the transition workshops as part of the Going Forward project, and are now available for download by clicking on the images below.

Please note all links were current on the dates shown but some services may since have changed.

Inclusion of a service does not imply a recommendation.

Read more about: Workshop handouts

Ongoing Support

Transition is a process and it can take 10 years or more for things to fall into place. The kind of support you want might change but it’s important to know where to look for help when you need it.

Parent support groups

Other parents are a great source of information and support. Whether it’s pointing you in the right direction, recommending services or just offering a listening ear, parents can be the most likely to understand the anxieties, joys and frustrations of supporting a disabled young person.

There are parent groups across Scotland, some for specific conditions, others for all disabilities. You can find a list of them here and they can be one of the best sources of up-to-date local information. If it’s difficult to get to meetings, many use social media to keep members informed.

Carers’ organisations

Many organisations across Scotland run social groups, training courses and local support networks for carers of all ages and backgrounds. They can give you free advice or a listening ear, point you in the direction of other services that can help, and sometimes link you with local services such as solicitors or financial advice.

Contact us to find out what support groups and organisations are in your area.

Online communities and chatrooms

These can be great ways to link up with others facing similar issues, especially if there aren’t any social groups where you live or it’s difficult to get to meetings.

You might be wary of chatrooms. But following a few basic safety rules can open up a good source of support and information.

• Protect your family’s identity. Don’t use real names and don’t give out any contact details.
• Don’t trust anyone. People you chat with online aren’t the same as friends.
• Look for online communities that are closed groups, where people have been invited to join by the group leader, or that are monitored so no one can post anything inappropriate.
• Stay in the public chat space. It’s safer to be where other people can see you. Don’t respond to private messages unless you already know the person outside the chatroom.
• If someone posts something that upsets or disturbs you, report it to the group leader or moderator. If they persist, report it to the police. Cyber bullying or cyber stalking is an offence.

Scottish Transitions Forum

The Scottish Transitions Forum’s role is to support improved approaches to transitions across Scotland. They work with professionals as well as young people with additional support needs and their parents and carers, by bringing people together to share ideas, learn, identify areas for improvement and come up with solutions. They meet several times a year and the forum is open to everyone. They also provide regular e-bulletin updates along with training and information sessions across Scotland.

ALISS (A Local Information System for Scotland)

This is a new online directory of services. Enter your postcode and a few keywords, e.g. “disability” or “carers”, for details of services near you. Because it’s new there are still a lot of gaps, but services are being added all the time, so it’s worth checking if you’re looking for something in particular – and if there’s something in your area that others might want to know about, you can add it yourself.

You don’t have to register to search the database, but if you want to add information, share links with someone else, or save a personalised list of organisations you’d like to follow, you’ll need to create an account (it’s free).

Compass

Compass is a digital tool created by ARC Scotland to help everyone involved in transitions planning to understand the process better and prepare for change.

Compass supports young people to explore what matters to them, and share their thoughts with people they trust. It gives parents and carers a transitions timeline that shows where they are in the process and points them to key actions at each stage. The professional tool has guidance on the statutory duties that apply to transitions, and clarifies responsibilities. All three versions link to the best sources of information currently available, and are specific to Scotland.

Compass is free and can be used by anyone who has additional support needs or who supports someone who does.

Click here to sign up to the right version for you.

Read more about: Ongoing Support