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
Read more about: Direct payments make you a partner, not a passenger
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
Read more about: Stepping stones to independence
Real life stories
We sometimes learn the most from people who’ve been in the same situation as ourselves.
Browse our collection of transition experiences – and if you have a story you’d like to share, please let us know. We’ll be adding more as time goes by.
Please note: some names have been changed.
Legal matters
Guardianship needn’t cost a fortune – Tips from a parent who got help to apply for Legal Aid.
When the police get involved – A parent describes what happened when the police were called to her son.
Benefits and finance
Direct payments make you a partner, not a passenger – What it’s like to manage your own support budget.
Stepping stones to independence – How two young people used their Transition Fund grants (with thanks to ILF Scotland).
Learning opportunities
Home education – a parent’s experience – A parent talks about her experience of home educating her son since P7.
Starting university – a student’s view – A deaf student describes the first weeks at university and the support that helped.
Starting university – a parent’s view – What’s involved in getting the right support, then taking a step back.
Planning for transition
Making sure Laura’s voice is heard – How to pass on your knowledge of your young person to those who need to know.
Getting a job?
Paid work possible? Absolutely! – How twin brothers with learning disabilities secured permanent full time jobs.
Window on the world of work – How one parent set up a successful work placement that has transformed her son.
