Living with a long term condition like arthritis can cost a lot. People may need money for things like transport to and from the hospital, medications, or home adaptations such as adapted baths, walk-in showers, wheelchairs, stair lifts and ramps (see Getting around, home adaptations and daily living). Sometimes spending time in hospital can mean taking time off work which may result in a loss of wages. People may also struggle to work full-time and have to settle for part-time hours. These costs can affect the young person’s whole family if they are living at home.
Jenna claimed travel expenses to and from the hospital when she was on a drugs trial but has to…
As young people with arthritis grow up, they too have to live with these costs. It can be hard for young people to live independently if they are not able to earn enough to support themselves: some of the young adults we talked to were still living with their parents who supported them financially. Several people said that they couldn’t afford to live independently while on benefits. Ruth described it as “dehumanising” having to depend on state benefits. It makes her angry that she is always being checked up on to see if she qualifies, and having to explain that she may not look disabled but still needs support.
In this section we talk about the sources of financial support that young people and their families received.
Information about financial support
There are several different sources of financial support available to families and young people, but people we talked to often thought it was a complicated system and found it difficult to know what they were entitled to. The lack of clear, coordinated information could be very frustrating.
People discovered what was available and how to claim it through various channels, including other people with arthritis and their parents. Charlotte Z’s parents talked about spotting people with a Blue Badge in a car park and asking them how to claim one. Having the confidence to ask others about financial support and being “proactive” about it was something that young people and parents recommended.
Robert and Karen were proactive in finding out about the financial support their daughter,…
Health and socialcare professionals like doctors, nurses and occupational therapists were also said to be good sources of information. Debbie got good advice from a GP, while Ruth got help filling out benefit forms from a social worker who was himself disabled. Karen and Robert recommended contacting the Citizen’s Advice Bureau.
Students at college or university could contact their disability support services about accessing funds which could be used to buy equipment such as laptops, specialist transcription software or special chairs (see School, College and University).
Sources of financial support
The type of financial support available to young people with arthritis will vary from person to person and depend on where they live in the UK. In this section we talk about the support that young people and parents applied for. If you want to read more about the types of support discussed here you can click on the links at the bottom of this page.
Young people get free prescriptions up to the age of 18 if they are in full-time education. If people have to pay for prescriptions then buying a Prescription Prepayment Certificate (PPC) for a year is a way to reduce the cost.
Allowances and benefits
At the time of these interviews some people we talked with were receiving Disability Living Allowance (DLA), a tax-free benefit for disabled people to help with the costs associated with having a disability. DLA for over 16s is now replaced by the Personal Independence Payment (PIP), but Disability Living Allowance can still be claimed for a child under 16. This is called DLA for children. What people get depends on how their disability affects them. Carer’s Allowance is also available for people looking after someone with substantial care needs. Sometimes people applying for DLA or PIP need to have a medical assessment to determine how much money they are entitled to. At the time these interviews were collected nobody talked about Personal Independence Payments.
Chantelle receives DLA and Attendance Allowance. Somebody at her local hospital helped fill in…
The Motability Scheme is a private scheme that enables disabled people to exchange part of their DLA to obtain a new car, powered wheelchair or scooter. For this to happen people have to be on the higher rate mobility component of the DLA or the enhanced rate of the mobility component of the Personal Independence Payment (PIP). Dan got a new car through this scheme.
Dan’s life transformed when he got a car through the Motability scheme. He spent more time out of…
People with mobility difficulties can also apply for a Blue Badge which lets them park close to where they need to go. They can use disabled parking bays and park on single and double yellow lines if it’s safe.
Some of the people we spoke to used a Blue Badge. Others didn’t apply for one, either because they didn’t need one or because they didn’t believe that they would be awarded one. Ryan would have liked his mum to get one but she didn’t think it was necessary. Emma has never applied for a Blue Badge or other benefits and thinks it’s important only to get what you really need.
Emma doesn’t feel she needs a blue badge because her arthritis affects her elbows more than her…
Occasionally people with a Blue Badge said that the public didn’t always understand why they were using disabled parking bays if they were not using a wheelchair.
Local councils can sometimes provide parking bays in front of disabled people’s houses if they have no driveway. This lets people park on the road near their house.
Students in higher education in England can apply for Disabled Students’ Allowances (DSAs). DSAs don’t have to be paid back and are given on top of student finances (such as student loans and bursaries). Money is paid to the university and is used to buy essential equipment and services to help people with their studies. Some of the people we spoke to received laptops, digital recorders, transcription software and chairs offering back support. Universities may provide additional financial support for disabled people on top of DSAs, for example to pay for transcribers and transport (see School, college and university).
Deni received a lot of help from her university including a light-weight laptop, a Dictaphone,…
Cat received DSA which helped pay for a supportive chair. She would have liked money to mend her…
Some of the people we spoke to received other types of financial support. For example, Charlotte Z had a Disabled Persons Rail Card which gave her and a companion discounted train tickets. She also had a Cinema Exhibitors Association Card which allowed a carer to accompany her to the cinema for free.
When Jenna was on a clinical trial for a new drug the hospital paid for her travel expenses to and from the hospital. Tina was also able to claim back her hospital travel expenses in Northern Ireland.
Some of the people we spoke to received support from local authorities (local councils). For example, Ryan borrowed a bathboard and wheelchair, whilst Jessica had a wheelchair ramp fitted to her front door. Dan was given an electric wheelchair from his local scouts group.
Mary’s local authorities paid for a wheelchair ramp so her daughter, Jessica, could get in and…
Local authorities can assess people to see if they are eligible to receive personal care services. If they are eligible, the individual can choose to have the money for equipment and personal care paid directly to them from social services (using direct payment), or they may be able to ask social services to find and buy the equipment on their behalf (known as commissioned services or direct services).
People who didn’t receive financial support
Not everybody we spoke to received financial support. Sometimes this was through choice. Mary felt it wasn’t worth applying because it was too much hassle for too little money. Elly stopped claiming DLA because her symptoms had improved so she didn’t feel she needed it anymore. Some people gave up their Blue Badge when their mobility improved.
People sometimes asked for financial help but didn’t receive any, or not as much as they would have liked. When this happened they were sometimes frustrated or embarrassed and wondered why other people were entitled to support when they weren’t.
Not being eligible for home adaptations such as stairlifts or bath equipment was a particular source of frustration and confusion. If they could afford it they would buy needed equipment using a credit card, but not everyone could do so. People were concerned both about lack of financial support for disabled people and lack of clear, consistent rules and advice.
Marie and an occupational therapist went to a showroom to find an accessible bath for her son,…
Finding out about financial support
For more information on the types of support people talked about, visit our Resources section.