These are managed regionally by local councils. There can be differences in how systems work depending on where you live, but all councils are required to take note of national guidelines and directives in making decisions.
Self Directed Support
This is how your young person will receive support and financial help from social services, if your local authority (council) agrees they qualify. Every council sets its own criteria for assessing if someone qualifies.
The local authority agrees a “support package”, which includes how much they will contribute towards the help someone needs.
Parents can receive self directed support for a disabled young person up to 18 years old, or young people aged 16 or over can receive payments in their own right.
With self directed support you can choose how the budget is managed. There are four options:
- Direct payments – an individual has full control of the budget, including choosing and managing service providers. This is the most flexible, but it can be complicated as you become responsible for everything in much the same way as an employer. If you decide to employ an individual rather than an organisation, for example to provide personal care, charities can help you with tasks like payroll services and accounting. Direct payments can only be used to buy support the council has agreed is needed.
- Individual service fund – the individual chooses the service, and the local authority arranges it and pays.
- Local authority arranged – the local authority selects, manages and pays for the service from the allocated budget.
- Mix and match – this option gives individuals the chance to manage some services themselves, while allowing the local authority to choose and manage others.
How to claim Self Directed Support
The first step is to ask for an assessment of needs. No one tells you when to do this – you make your own referral by calling social services. Charities and community organisations can help if necessary. The number to call will be on the social services section of your council website.
There isn’t a deadline for having someone’s needs assessed, but it will be handled by children’s services or adult services, depending on the age of the person.
If someone is under 16, ask for a Section 23 Assessment. If they are over 16, ask for a Community Care Assessment. You should also ask for your own needs to be assessed as a parent – this is a Section 24 Assessment, and it’s important to make sure you get the right help and support too. In particular, a full assessment of needs is essential for adult respite services.
You have the right to request an assessment, and any support package will be based on the findings. However you aren’t automatically entitled to have identified needs met.
If the council decides someone doesn’t meet the criteria for social care services, it still has a duty to provide information and advice about community support that might help.
Challenging a decision
If you disagree with a decision, you can challenge it through your local authority’s appeals process. You can find out about this on their website, or over the phone.
Ask for an explanation of the decision in writing. If you feel it’s inaccurate or unfair, you can ask for your case to be reassessed.
If this doesn’t help and you want to complain, it’s worth asking local disability or support groups to help you put your case forward. You are entitled to request an independent review and, as a last resort, you could consider taking your complaint to the Scottish Public Service Ombudsman.
Education Maintenance Allowance (EMA)
This is a weekly payment for 16 – 18 year olds (and some 19 year olds) who stay on at school/college or in certain types of unwaged training. It’s means tested on parental income.
You apply through school or college. You will need to complete a new EMA application form and a learning agreement every academic year for as long as you claim the allowance.
Council tax discounts
A PIP award may mean you can claim a discount on your council tax. If a young person is 18 or over and receives the enhanced rate for the daily living component of PIP, you may qualify for a discount as their carer.
Whether you qualify, and by how much, depends on how many adults live in your property and their circumstances. Speak to your local authority.
Scottish Welfare Fund (SWF)
This fund offers a safety net for people on low incomes. You apply through your local authority.
There are two kinds of grants: crisis grants, to cover disasters (such as fire or flood) or emergencies, and community care grants to help vulnerable people set up home or continue to live independently.
Blue Badge scheme
This allows parking concessions for people with disabilities. The badge is issued to an individual, and can be used in any car where they are a driver or a passenger. You apply through your local authority, which may charge a processing fee.
The Blue Badge scheme is recognised throughout the UK, but there may be local differences in how and where the badge can be used – if in doubt, check. Transport Scotland recently recommended extending the scheme to people with mental health or cognitive impairments that may affect their safety in traffic.
Main disability-related benefits
These are currently managed by the Department of Work and Pensions (DWP).
Disability Living Allowance (DLA) – under 16
This is no longer available to adults. Children receiving DLA should apply for Personal Independence Payment (PIP) when invited to do so: children who have not received DLA should apply directly for PIP.
Personal Independence Payment (PIP) – age 16–64
This is for disabled adults who find it difficult to carry out tasks related to independent living or who need help getting around outdoors. It isn’t means tested and will continue if someone starts work. There are three stages to an application:
- Completing a short form on the phone with a DWP adviser. A parent can make the phone call, but unless you’ve been accepted as an appointee by the DWP your young person must be with you to confirm they are happy for you to speak for them.
- A detailed written questionnaire about how the person’s disability affects them. You must return this within a month – you can ask for an extension, but it’s not guaranteed. You can include supporting evidence about someone’s condition. Avoid sending original documents, and keep a photocopy of the form so you remember what was said.
- Most people have to attend a face to face consultation. You can ask for an assessment at home, but this isn’t guaranteed. You can go with your young person to support them, make sure they understand the questions, and help them answer if necessary.
Universal Credit (UC) – age 16 to pension credit age for someone who has “limited capability for work”
This new credit uses one payment to replace six other benefits, including income related employment and support allowance (ESA), housing benefit and income support. It doesn’t affect PIP. Universal credit is scheduled to apply to all areas of the UK by December 2018. It is means tested, based on the young person’s income and savings.
Young people claim online at www.gov.uk. They are asked to agree to a “claimant commitment” – many claimants are expected to look for work. If they can’t work they need medical certificates (“fit notes”) from their GP. The DWP sends a questionnaire to assess how someone’s condition affects them and there may be a face to face assessment to decide how much they will receive and if they should take steps to find work or become “work ready”.
People who receive the benefits universal credit is replacing will be moved onto universal credit gradually from 2019.
This is the main benefit for someone looking after a disabled person. Many parents of disabled children and young adults qualify. You are eligible if:
- You are 16 or over
- You are not in full time education
- You look after someone who receives the middle or highest rate of the care component of DLA, or either rate for the daily living component of PIP, for 35 hours a week or more (care overnight and at weekends counts)
- You don’t earn more than £120 a week (£123 from April 2019) after certain deductions – only the carer’s earnings are taken into account, not other household members
- You meet criteria linked to your immigration status and length of stay in the UK.
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.
Getting your finances checked
Speak to a disability benefits specialist
It’s important to find an adviser who has specialist knowledge of disability benefits, as the best options for you can vary depending on your circumstances.
You can call the Contact helpline on 0808 808 3555 and they will arrange a time for an expert adviser to call you back. For information on finance and education in Scotland, call Lead Scotland’s helpline on 0800 999 2568. Other organisations also offer advice.
Talk to an Independent Financial Adviser
Anyone can visit a Financial Adviser to review their general finances and ask for advice on financial planning, particularly around big decisions like mortgages, investments, pensions, insurance and tax. However they don’t usually have detailed knowledge on benefits and entitlements, so you should still speak to a specialist.
Independent Financial Advisers must by law give up to date and appropriate advice tailored to your situation and goals in life. They can recommend financial products, but only if these clearly meet your needs, and you can still ask their advice even if you don’t accept their recommendations.
A Restricted Financial Adviser can only recommend a particular type of product or products from a particular company.
Usually advice is free, but always ask about fees to avoid any misunderstanding.
There are two main reasons to seek financial advice. You could be looking for answers to a question or a situation you need help with. Or you might be wondering how to get the best deal for you and your family.
An adviser will need to know as much as possible about you. Make sure you know:
- The total annual income for your household
- How this is broken down into earnings, benefits, or other sources of income such as investments
- How much you have in savings
- How much you pay monthly for your house or flat. Include mortgage or rent payments, council tax, electricity and gas bills
- How much you spend monthly on food
- How much you spend on other necessities such as clothes, transport and so on
- What you spend on leisure activities – social life, subscriptions, memberships, etc
- How much you pay in insurance – home and contents, pet insurance, car insurance, life insurance
- Do you pay into a pension?
If you have any specific questions, write them down to make sure you cover everything you want to talk about.
If you don’t understand something, say so. The adviser needs to know if the advice they’re giving you is useful.
Benefits and entitlements
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 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 two sources:
- The UK government (through the Department of Work and Pensions or DWP, and as child benefits or tax credits through HMRC)
- Local government (through your council).
This is set to change as responsibility for some social security benefits is being transferred to the Scottish Government. A new agency will manage 11 benefits, including disability living allowance, personal independence payments and carer’s allowance. The transfer of powers should be complete by 2021.
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 the Department of Work and Pensions to be their appointee – if they agree, you can act on the young person’s behalf.
Disability Living Allowance (DLA) is replaced by Personal Independence Payment (PIP).
Your young person can’t get DLA once they are 16. The Department of Work and Pensions should invite them to claim PIP instead and if they apply by the deadline they are given, their DLA payments will continue until a decision is made on their claim. If they don’t claim when asked, their DLA payments will stop. If you think they need your help to do this, you should apply to the DWP to become their appointee.
This applies to all 16-year-olds except those with a terminal illness. If your child is in hospital when they turn 16 they won’t be asked to claim PIP until they are discharged.
Where young people haven’t been receiving DLA, for example in cases of late diagnosis, they should apply directly for PIP.
This is a new benefit replacing most means tested benefits, including child benefit; child tax credit; employment and support allowance (ESA); housing benefit; and income support.
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.
If your young person is staying in full time, non-advanced education (usually at school or college) there is a choice.
Either they can claim universal credit in their own right, or you can continue to claim child benefit, child tax credit or universal credit payments for children. Payments for a dependent child can continue until they turn 20 (September after their 19th birthday for universal credit) or until they leave full time, non-advanced education – whichever happens first. If your son or daughter starts to receive universal credit in their own right, those payments stop immediately.
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. Get advice from an independent benefits adviser before deciding.
Choices you make may impact on other benefits and the amount you receive.
If no one in your family is working, you are exempt from the UK government’s cap on benefits while you have a dependent child receiving DLA or PIP. Once a young person claims in their own right you may find the benefit cap applies and your benefits could be restricted – although you may still be exempt if you receive carer’s allowance or the carer element in universal credit. An adviser can work out the implications for you and your family.
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 should continue when young people move into further or higher education. Young people receiving PIP 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.
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.
Benefits & Finance
Things change at age 16. Find out what you should know – and where to get information and support.
Things to think about
Benefits and entitlements
The law assumes all 16-year-olds manage their own finances unless they don’t have capacity. If you feel your young person will struggle, you should call the Department of Work and Pensions to ask about becoming their appointee so you can do this on their behalf. You should also consider getting guardianship or Power of Attorney for finance in place, particularly if your child might have income or capital other than benefits – for example, property inherited from a family member.
Get a finance health check
Knowing what someone’s entitled to is a start.
You also need to know how a claim by them might affect benefits you receive, as their parent. Sometimes there’s a choice, so it’s important to speak to a benefits adviser to understand what’s best for your family as a whole.
It’s a good idea to get a benefit check every few years to make sure you aren’t missing anything, especially if there’s been a change in circumstances – for example a family member turning 16, or moving into paid employment.
Other sources of funding
Many charities, trusts and government schemes provide money for a range of things, from equipment to helping with transport to paying for holidays.
The Scottish Government launched a £5 million Transition Fund in 2018 to give young people with learning difficulties and disabilities the chance to develop their interests, build life skills and get more involved in their communities.
Finance and education
Young disabled adults going to college or university may qualify for help with accommodation costs, travel expenses and the cost of certain types of support.
Lots of people worry about managing money or find it difficult. If that’s you, don’t be afraid to ask for help.
Check our tips on
- Financial planning
- Managing a personal budget
- Dealing with debt
- Building your young person’s financial awareness.