Guardianship needn’t cost a fortune
Applying for guardianship might seem challenging but good advice can make all the difference. Carer support helped Karen and her family through the process – and saved them money.
My advice to other parents would be start early, and don’t be fooled by people who say you need to pay a fortune to get this done.
I knew from talking to other parents that guardianship was something we’d need to apply for. My husband went to a workshop where they said this had to be done through a solicitor, and it would be expensive – an amount in the thousands was mentioned. It concerns me some parents might believe that, and end up thousands of pounds poorer, when actually we did it for nothing.
Someone suggested I contact VOCAL, the agency that supports carers across Edinburgh and Midlothian. They organised a free chat for us with a local solicitor, who then managed the whole process.
We started a few months before Sam’s 16th birthday, but it took nearly 2 years from start to finish. That seems typical according to other parents I’ve spoken to. It helped that the solicitors outlined the whole process at the start and told us what the timescales were likely to be, and they were pretty accurate.
The first step was applying for Legal Aid – the solicitors did that but it took a long time before it was approved, from July until the following February. It then took ages to compile the reports we needed. You have to go to each professional and tell them everything about your child and the level of their difficulties all over again – it’s very much like filling in the PIP form.
The reports are put together by a mental health officer, and there’s a long waiting list because there aren’t enough of them to go round. That was another reason why it took so long. You have to wait until you’ve been assigned a mental health officer because otherwise the reports might be outside the legally specified timescale – and you may have to start again from scratch. Parents can get caught out that way.
The mental health officer also had to check our suitability to be guardians before the application could be submitted.
In the end we were granted guardianship for 5 years, which I think is fairly typical. We’ll have to reapply then.
It was really helpful that the solicitors were honest about the process so we knew in advance what to expect – for example they told us at one point we wouldn’t hear anything for about 10 months, so when it went quiet we weren’t worried.
My advice to other parents would be start early, and don’t be fooled by people who say you need to pay a fortune to get this done.
Window on the world of work
Kate arranged for her 16-year-old son Connor to do an 8-week work experience placement at Eden Court Theatre in Inverness. The impact on his confidence was immediate and far beyond her expectations. Now he’s looking to the future – and so is she
“We can rely too much on professionals – sometimes we just need to get on and do it ourselves, then tell other parents so they go: ‘I could do that’.”
Deciding what to do for the rest of your life is a tall order at 16. Yet advice and support for young people seems to depend on them knowing the unknowable.
To Kate it was obvious Connor, who has autism, would have to try a job first to know if it might work for him.
“If he couldn’t be a professional gamer, Connor said he’d like to be either a cinema projectionist or a sound and light technician,” she says. “I explained the job might sound great, but he would need to get an idea of what it would involve for him.”
She wasn’t sure who to contact about work experience but in the end went straight to the top, emailing the chief executive of the Eden Court Theatre directly with her request.
It takes courage, but Kate believes parents should be bold and simply ask more often.
“The worst they can say is no – in which case we’re no worse off than we were before,” she says. “The more often you do it, the more you realise people do want to help. Places like Eden Court may even prefer to deal with parents directly, because it can be more flexible.”
Connor is shadowing the theatre technicians for around 2 hours a week, hands on as a full member of the team. Kate takes him to the theatre and stays on hand, but rarely sees him: “I sit and read a book. He just disappears with the rest of the team.”
In his first week Connor was setting up lights, then moving flooring and building decking for a graduation. At Christmas, he helped with sound and light for the school show. Everything is practical – the team show him how to do a task, then leave him to get on with it, but are there to supervise and help if it’s needed.
“This is the first time he’s ever been enthusiastic, about anything,” Kate says. “He has very low self confidence and has struggled a lot with anxiety, but when he’s doing this he just beams. He’s like a different person.”
The experience has had a huge impact.
“A real plus is he can see people have come through different routes – some have been to college, others have learned on the job. It’s good for him to know there are different ways people get to where they want to be. It gives him hope.”
The impact has been felt at school, too.
“He’s never been able to attend school more than 6 hours a week, but now he’s trying all kinds of things he never thought he could do. He’s talking about doing a course in sound engineering,” Kate says. “The experience has given him a really practical vision of how he might manage in the future. It’s also given him different insights about friendship and how it works – as a member of the team, everyone looks out for each other, and they’ll have your back. Until this Connor didn’t really have friends apart from online. It’s given him social skills he was lacking before.”
Kate hopes it may be possible to extend the placement, although she knows many other young people will also be looking for this kind of experience. But she’s convinced the skills and confidence Connor is developing will be invaluable for the future.
“The main thing is, it’s opened his eyes to what’s possible and given him hope there will be things he can do,” she says. “I gave up work several years ago to support Connor, but I’m now volunteering at the local hospice and hoping to transition back into work next year. So hopefully both our lives will change.”
A big thank you to all at Eden Court Theatre in Inverness for their support and for the backstage photo
Starting university – a parent’s view
Suzanne’s daughter Emma has severe hearing loss. Without hearing aids she can’t process sound and hears no speech. She is in her final year studying German and Applied Language Studies, having spent a year as an English language assistant in a German secondary school.
When we met the support staff they went through everything and as well as accommodation and tech they set up a meeting with the language department head, lecturers and an audio specialist. They really knew their stuff – it was so reassuring.
We started thinking about the support Emma would need when she was about 15 or 16 years old. She had always expressed an interest in university so we knew it was a possibility.
As much as anything, we looked at what financial support would be there, especially from a technology viewpoint, because whichever course she did technology would be one of the most expensive parts of what she would need.
Then when she started applying to universities, we talked to them all, asked what support groups they had, what support there was for deaf students, if they had experience of deaf students.
Emma and her dad visited the universities and managed to talk to people at every visit, to find out attitudes as much as anything – things like did a lecturer of German balk at the idea of having a deaf kid in his group. Actually nobody did. They were all extremely accommodating and I think meeting Emma helped because they got a measure of what kind of person they were getting. It was probably that Highers year when we did most research into what was needed.
It was a lucky coincidence that Emma went to university close to where we live. She wanted to go further away, but after a difficult and exhausting Highers year that wasn’t possible and in fact having her closer to home has worked beautifully.
A piece of advice I would give to parents is consider how far away you are going to be, because while I’ve played a much smaller role in supporting Emma through university there have been times when I’ve had to step in. All the support is student driven, so if the students get to a point where they’re not in a position to ask for help themselves, being able as a parent to see that almost immediately and do something about it is very useful.
I found it very easy to step in on Emma’s behalf when I needed to. Student support has been amazing. Every time it’s been to do with mental health issues, so fatigue driving her down, anxiety, feeling depressed, losing her confidence, not being able to concentrate. I have taken her with me to the support team and without fail they’ve immediately set up counselling, study tutoring, everything she needs. They also invoke the learning plan that entitles her to extended deadlines and so on.
The main thing hasn’t been getting the support people to do it, it’s been getting Emma to recognise when she’s at the point she needs help. In her second year it came a month too late and I didn’t recognise what was going on because I wasn’t seeing so much of her. So it’s about keeping your eye on the ball and trying to recognise when you know your child is not at her best. But from a university point of view, it’s been very easy.
Just about everything was in place when she started. There were a few small glitches but the tech people sorted them out. Within 2-3 weeks everything was running smoothly. To be honest I couldn’t believe how helpful these people were, and how knowledgeable.
I wasn’t emotional when Emma first started, I became very practical. It was all about Emma and her gaining confidence to do things for herself. In my mind, part of her course involved a year abroad, and I knew she had a very steep learning curve to get to the point where she would be able to go to a foreign country and do everything for herself. But Emma is an incredibly strong person, I have complete respect and faith in her ability.
The weekend she moved into halls actually went quite badly, which surprised me and I have to say on the Sunday evening when we left her at the university I was quite a mess inside because I was really worried about what the first few days would hold. So I was really torn – she was in floods of tears, and we had to say we need to go now, you have to do this, this and this. We talked to each other about 2 hours later and she was fine because by then she’d met other people on her course. But that was by far the most difficult part.
We’ve always encouraged Emma to be totally honest about her extra needs and also about the impact of her deafness, which entails fatigue which can then impinge on mental health issues. Being honest helps her get the support she needs.
Starting university – a student’s view
Emma has severe hearing loss. Without hearing aids she can’t process sound and hears no speech. Learning to speak herself took intensive speech therapy to age 6 and on and off to age 11. She is in her final year at university studying German and Applied Language Studies, and has just returned from a year as an English language assistant in a German secondary school
I’m a very firm believer that any kind of disability or additional support need shouldn’t directly dictate where you should go and what you should do. You should be able to choose any course you want, and if it needs to be made more accessible to you then hopefully it will be. So don’t cut yourself off from doing something just because you “shouldn’t” be able to – look at how it can be made possible for you.
My first year entailed a range of language courses and I had tech provided so I could take part – especially the aural classes. I’d used a radio aid in school so the university helped find one that was more modern. I had headphones provided for the language lab, where they set up software on one of the computers to direct to my personal headphones rather than the general ones anyone can use.
There was lots of additional technology to make my hearing aids work with the technology the university already had. I was also issued a university printer and a laptop that came with recording software and a digital recorder so I could record my lectures, get the slides from the lecturers and make my notes from them all in one place. All that was paid for and insured by the university through the Disabled Students Allowance.
I’d advise someone with a disability to find a university where they feel comfortable. It’s important to get a head start by talking to various departments, making sure it’s a place where you’ll feel supported.
It goes beyond the course being a good fit – find out if the campus is a good fit for you, if the support department are accepting of you, if they seem to have everything in order so they can assist you. Be aware they are going to be there to help, as long as you ask them. There will be stuff out there, but you may need to go and find it. The responsibility is a bit on you.
I lived on campus for the first year and it was my first time living and working away from home. We talked to them very early on, at the beginning of the summer before I started the course.
I very much wanted to live away from home, and I think it’s good not to be afraid of wanting to do that, because you’re going into a kind of intermediary stage in halls – you still have support from the university staff.
I was lucky because mum and dad were just down the road, but it means you can get used to living by yourself, cooking for yourself, not necessarily doing washing for yourself because washing machines are complicated!
The person responsible for DSA helped organise the tech needs, and we sorted out accommodation with her too. She asked questions like what kind of location would be good? How many people do you want to live with? What extra support might you need?
I needed an extra fire alarm unit linked into the university system, which made the alarm louder in my room and also had a red flashing light. After the first few weeks the support team spoke to the janitor and arranged that if there was an alarm they would also come and check my room if possible, especially during a drill, to make sure I had got out of the building. That was a very doable arrangement because I was on campus. And of course my flatmates were also aware, so they would also knock on my door.
Lots of things are common to everyone in the first few days, regardless of if you have special needs. Most people are living away from home for the first time so everyone’s a bit confused. Even if you feel completely removed from everyone else’s experiences because you need X piece of tech or Y arrangement, actually pretty much everyone is in the same boat, trying to work things out.
With my course, because it’s languages, there was listening and speaking, so it was very important to get the lecturers and to some extent peers in the class to understand I could do the work, I just needed a bit more time to respond because of the things I need to do to make that happen. That’s probably the main difference.
In terms of making friends, it can be quite lonely at first. There were a lot of Freshers’ events which usually involved some kind of party, an enormous gathering of people. And for me, I don’t do well in noisy situations. On the first weekend there was a massive halls party, and a lot of people got to know each other through that. For me that wasn’t an option because it was just too noisy. But through the week they had things like an afternoon tea in the support centre, and arts and cultural stuff in the postgraduate centre. If you seek out the clubs and festivities you’re interested in you will eventually find like minded people, or they will find you, and you just stick together.
It’s not a simple thing, especially when you’re not great at socialising, but you will find people to hang out with – also, they won’t necessarily be on your course, that’s the other thing. I hardly socialise with anyone on my course, but because someone isn’t doing the same thing as you it doesn’t mean you can’t spend time with them if you want to.
When the police get involved
The police were called to Lesley’s son David, then aged 18, when an incident at a local swimming pool escalated. She describes what happened, and offers advice to other parents finding themselves in a similar situation.
David has a rare condition called pachygyric lissencephaly. This means some parts of the surface of his brain are smooth and flattened, leading to learning and physical difficulties, challenging behaviour and epilepsy. He can be wobbly and unsteady on his feet, and his fine motor skills are affected. Often he will find it hard to retain things he’s learned and will forget what has happened, leading to frustration and outbursts of anger.
“David had had informal warnings over being aggressive to staff and hitting people, but it was beginning to escalate,” Lesley explains. “We’d put protocols in place with the support service provider to make sure the number of incidents would be reduced. One day he’d injured his leg, couldn’t go swimming with the rest of his group, and had to wait in the café at the pool. He became angry and impatient, and began turning tables over and threw a chair, so the support worker called the police. He was arrested and taken to the local police station.”
Lesley was called by the day support service and asked to meet them at the station.
“I was very upset and angry the situation had escalated to this point, and that the support service had lost control over it by calling the police. They were supposed to always have extra staff so someone could be with him, to avoid this very situation arising, but people were off sick so it went wrong.”
The social worker on duty left when Lesley arrived. Lesley could be in the interview room with David, but only because she was his guardian, not as his parent.
“They asked him if he had done what was reported, and he said he had,” she says. “I asked after each of their questions, did he understand what they were saying, and he said ‘No’. I wanted to have it on record that he had no idea what was going on at this point. Eventually they asked me to stop, as it wouldn’t make a difference to any decision to charge him – but they did keep saying they didn’t think the Procurator Fiscal would take it any further.”
The family had a long and stressful wait to find out if David would be charged. In the end it was decided a prosecution would not be in the public interest, although Lesley was warned that if David had hit a police officer or hurt someone the outcome could have been very different.
The incident taught me I needed to educate myself on how to support him, she says now.
“I went to a few meetings of SOLD (Scottish Offenders with Learning Difficulties). They were aimed more at support organisations than families, but it was a good network to call on. It was scary to hear about young people who had been in prison. I understood I need to be prepared. I also went to an event about prison admission organised by the Mental Welfare Commission, although mental health issues and learning difficulties aren’t the same. But it was good to find out more about them, and it confirmed my feeling we need the help and support of mental health services.”
The main advice Lesley would pass on to others is to apply for guardianship as soon as possible, as you never know when you might need it. Had she not been David’s guardian, she would have been unable to support him during the police interview as only an “appropriate adult” – usually someone appointed by social services, and not necessarily with any knowledge of the individual or their condition – would have been able to sit in.
“Ask questions of the police officers, and don’t be put off by difficult or unhelpful people,” she says. “If you don’t understand, ask them to explain what’s happening. There seems to be a great rush to charge after an incident. Try and buy some time to think of the best course of action. Have some useful numbers handy of agencies or people who might support you, or a good lawyer if you feel you might need it.
“I’ve also since discovered that having some contact with mental health services would have been advantageous to David and us, as he would be known to them and ‘in the system’ as someone not fully responsible for his actions. The police seemed to take this as something they would have expected us to have already.”
Direct payments make you a partner, not a passenger
A parent shares her family’s experience of managing their own budget to buy support services in Edinburgh. All local councils decide their own procedures, so please be aware the processes may be different in your area.
I decided to manage our own budget when we found out the council was tendering all social care services and my son’s care package would be sold to the highest bidder. It meant he could be moved to another provider after all the time and trouble it took to create a safe and secure environment around him.
If you don’t have direct payments, in reality your services can be tendered and your child moved at any time. If you have direct payments you control the provider and can act like any customer – if you’re not happy you can move!
I became a Trust and Foundations Fundraiser after my son was born and produced budgets for the projects, so I had some skills already. I think it was good for me to understand more about a care package and how it is put together, the different rates, and the different contracts and providers.
My son has a full package – 24/7 means 168 hours per week. This is broken into different rates, from different providers, and a special rate for overnights. It’s best to set up a new bank account for money to be paid into – for example money from the Independent Living Fund, PIP or DLA. We applied to the Independent Living Fund for money for day services. You can use this bank account to pay the invoices your provider will send you, that they used to send to the council.
In Edinburgh you also get an ALLPAY card from the council pre-loaded with money to pay the rest of the care costs. This is a type of credit card with limitations, so you can only pay through ALLPAY and only to a care provider. They are very helpful – you just call the number they give you, say which provider you want to pay and the invoice number it relates to.
My son’s 24/7 package is around £6000 per month. He gets £1342 from ILF and the rest from his DLA/PIP and social work.
It’s important to keep good records and all the invoices, making a note of when you pay them as you will have 6-monthly meetings with both social work and ILF to see how you are managing the payment system. I had to be my son’s benefits appointee to be able to do this.
We haven’t encountered any problems, although they sometimes send different amounts to the ALLPAY card for no reason, which is strange.
The main challenge is good record keeping. You need to have a folder with all the information and invoices, and check them before you pay. Otherwise it’s easy in that it doesn’t really change much. If you can manage to pay household bills, you can do it!
My advice to parents thinking of doing this is to go ahead. You will have more control over your child’s care – as money gets tighter the tendering process will mean councils go towards cheaper and not necessarily better providers. With direct payments, you choose.
It also means you increase your knowledge about your child’s care package, which in the current climate is a really good idea so if you encounter any problems you will be well informed. It makes you a partner, not a passenger, in their journey.
Be brave! You will soon get the hang of it and it becomes the same thing every month.
Figures are current as of October 2018
Stepping stones to independence
From garden sheds to driving lessons to taking part in a competition in Colorado – the Scottish Government’s Transition Fund, managed by the Independent Living Fund Scotland, is available to help young people with a disability or impairment gain more independence and play a more active part in their communities
Emma is 18 and has a range of disabilities, including speech impairment, learning difficulties and Down’s Syndrome.
She attends college and uses her family iPad to connect with the outside world. She enjoys writing and drawing on the iPad and loves the art feature, which allows her to trace pictures.
Emma’s life revolves around routines. Her communication skills are limited, which makes it difficult to interact with others, so her social circle is based on close family members.
She has a limited sense of danger awareness and has to be supervised constantly, which restricts her ability to take part in activities.
Emma applied to the ILF Scotland Transition Fund for an iPad Pro, pen and keypad. Unrestricted access to this technology helps Emma’s learning and understanding of her surroundings, and helps her to feel connected with the outside world.
Emma’s dad said: “From our viewpoint the fund has been a gateway for Emma into a world of information that she was previously excluded from. It has been a game changer in giving her parity with her peers.”
Gavin is on the autistic spectrum, struggles with communication and has a limited social life. A talented athlete, his goal is to be selected for the GB Paralympic Squad. The swimming and athletics communities provide him with a stable and secure environment to meet friends and mature as an adult while keeping fit.
He has been recognised for winning various medals in swimming and athletics for both mainstream and disability clubs. He trains with the Scottish Senior Swim Team for Athletes with a Disability and in 2017 he won gold in all the events he entered at the Scottish Senior Championships for Swimmers with a Learning Disability.
His goals are to be selected for the GB Paralympic Squad, and to continue athletics training so he can reach his full potential as a long distance runner. In the longer term, he would one day like to become a sports coach for children and adults with disabilities.
Gavin applied to the ILF Scotland Transition Fund to pay for swimming and athletics fees, personal fitness fees, his uniform and a ski trip to Italy with Abercorn High School.
Funding from ILF Scotland for extra training and fitness sessions will help him reach his goal of being selected for the GB Paralympic Squad. The one off trip to Italy provided him with invaluable life skills by increasing his confidence and social skills, as well as his independence, which he will be able to use in everyday life and which will help him in his long term aim of becoming a sports coach.
During the Easter holidays, Gavin used some of his funding to take part in a Royal Life Saving Society (RLSS) National Pool Lifeguard course. This provided him with essential life skills, such as First Aid training, which will allow him to work in the leisure industry – another step towards his long term goal.
ILF Scotland funding has been a valuable stepping stone for Gavin. The long term impact for him will be life changing, providing Gavin with the vital skills to develop a career in sports coaching, with the hope of being selected for the Team GB Paralympic Squad.
With thanks to ILF Scotland and Gavin’s and Emma’s families for permission to share their stories
Making sure Laura’s voice is heard
Moving from children’s to adult services means young people and their families have to deal with new people, new ways of working and different professionals. Kate explains how she makes sure everyone who meets her daughter has the right information to support her properly.
“Laura has Wiedemann-Steiner syndrome, which is a rare genetic disorder. I discovered quite early on there were going to be many different professionals involved in her life,” Kate says.
“Having so many people involved with Laura’s care results in lots of different information to communicate. Each individual who works with her needs to know all the important information we collectively have learned about Laura, who she is, and how she understands the world around her. The challenge for me was: How do I convey all this accumulated knowledge to each person Laura will encounter?”
The answer was a communication passport – a 30-page booklet the family put together detailing every aspect of Laura’s life, likes and dislikes. From diagnosis and medication, through physical and personal care preferences, to how best to talk to her, Laura’s passport lets anyone see at a glance what they need to know in any given situation.
The booklet travels everywhere with Laura, but Kate also has a digital version she emails to support workers and other professionals in advance so they have time to get to grips with Laura’s needs and wishes before they meet her.
“It works across education, medical settings, in fact anywhere someone has to converse with Laura,” Kate says. “It gives her a voice and it’s an excellent two-way tool for everyone involved in her support.”
The communication passport has proved especially valuable at times of change.
“Transition of any situation is difficult for someone with a learning disability, but transition from children’s services to adult provisions is extremely challenging not only for the individual but for the whole family,” says Kate, “I started early, at least 2 years, and I still ran into many challenges.”
Kate’s advice to families planning for transition:
- Plan early.
- Aim high. Think about what an ‘ideal’ scenario for your son/daughter would be. Maybe not all aspects of this vision will be achieved, but at least some will be.
- Don’t give up if you encounter barriers – barriers can be overcome.
- You know your child’s needs better than anyone. Use that wealth of information in getting their needs met.
Principles of Good Transition 3
The Principles of Good Transitions 3 is produced by the Scottish Transitions Forum and identifies seven key principles for a positive transition. These are endorsed by the Scottish Government, local authorities, health boards and all the major disability support organisations in Scotland.
You can download a copy at scottishtransitions.org.uk.
What is advocacy? Can it help me?
An advocate listens to your views and concerns, helps you explore your options, and supports you to communicate your wishes in meetings and appointments. They won’t make decisions for you, but they will ensure you have all the information you need. They will also make sure meetings cover everything you want raised, that you get to ask questions, and afterwards that you understand the outcome.
Everyone finds it difficult to get their point across sometimes. It can be intimidating to speak up in a room full of professionals – and even if that isn’t usually a problem, emotion or stress can make it harder. Advocates work with you or your young person for a better chance of getting your voice heard in discussions that affect you. Some are trained to support people with little or no speech to identify and communicate their wishes.
