Living with a rare disease or disability during the cost of living crisis can be challenging. We have put together a centralised resource hub where you can find relevant organisations that can assist with various aspects of life. On this page you can find organisations that offer financial help and advice. Scroll down to see links that you will find useful or you can return to the cost of living page to navigate to other resources.

If you are caring for a child with a life-limiting or life-threatening condition, you can book an appointment for a free 30 minute session with Together for Short Lives’ Energy Adviser. If you are finding it hard to pay your energy bills and would like to talk to somebody, they are here for you. Sessions are available every week day, 10am – 2pm.  

Do you need advice on money and pensions? MoneyHelper is a free service offering impartial guidance on money and pensions. They are backed by the UK Government, and can recommend further support if you need it.

If you’re struggling with your mortgage rate, you may be able to get help from your mortgage lender.

There are six key ways in which the charter might help you:

• If you’re worried about repayments, you can now contact your lender for help and guidance, without any impact on your credit score.

• If you’re up to date with payments, lenders will let you switch to interest-only payments for six months.

• If you’re approaching the end of a fixed rate deal, you will have the chance to lock in a new deal 6 months ahead.

• If you’re up to date with payments, you can switch to new mortgage deals.

• You can access tailored support from your lender if you’re struggling with payments.

• Homes cannot be repossessed within 12 months of a first missed payment.

Are you in need of advice about debt and money? Citizens advice also have a page full of information regarding debt and money.

If you’re struggling with debt, the National Debt line aim to provide free, impartial, expert advice.

If you are unsure about what support is available to you, Advicelink Cymru can help you check what you are entitled to and to claim what’s yours.

When you call Advicelink Cymru, on 0808 250 5700, you will get free and confidential advice about money you may be entitled to.

Advicelink Cymru can help you apply for welfare benefits, such as Personal Independence Payment, Carers Allowance and Pension Credit get Welsh Government support with fuel costs, school and childcare expenses and further and higher education costs. The Advicelink Cymru helpline can also arrange for you to get help with debt and personal finance issues.

You can contact an Advicelink Cymru advisor by calling the free helpline on 0808 250 5700.

Lines are open from Monday to Friday between 9am to 5pm. 

Carers Allowance - If you spend at least 35 hours a week caring for a disabled child and they receive the middle or higher rate care component of DLA (Disability Living Allowance) or the daily living component of PIP you may be able to get Carers Allowance.

Attendance Allowance helps with extra costs if you have a disability severe enough that you need someone to help look after you. You can find out more and see whether you’re eligible via the link below.

NHS health costs - Find out about when you need to pay, help when on universal credit, travel costs and personal health budgets.

Disability Living Allowance (DLA) is the main benefit for children under 16 with a condition or disability. Families we speak to describe getting this benefit as ‘life-changing’.

Have you been affected by illegal lending and related crime? Stop Loan Sharks support victims and protect people from illegal lending and related crime.

The TV licence Simple Payment Plan was created for those in financial difficulty.

If you qualify, you may be able to choose from either a fortnightly or monthly payment plan that spreads the cost of your licence over 12 months, which is different to current payment plans. The Simple Payment Plan also offers flexibility if a payment is missed, as it can be spread across the remainder of the plan instead of having to pay double the amount next time. If payments are missed three months in a row, customers are removed from the Simple Payment Plan. You can see if you’re eligible and find out more via the link below.

You might be able to apply for a Council Tax discount or exemption if you or someone you live with is disabled. You may be entitled to extra help with your council tax through Council Tax Reduction (sometimes called council tax support or rebate) which can reduce the amount you have to pay. This scheme is administered by your local authority and whether you are entitled and the amount of help you can get is determined by them

VAT relief - If you’re disabled or have a long-term illness, you will not be charged VAT on products designed or adapted for your own personal or domestic use. Also, you will not be charged VAT on:

• the installation and any extra work needed as part of this

• repairs or maintenance

• spare parts or accessories

  The product and your disability have to qualify.

VAT relief if you're having building work done in your home: You'll be able to have eligible building work VAT-free if you're chronically sick or disabled and the building work's being done in your own home. You do not need to be registered disabled or eligible for any other benefit to qualify for VAT-free building work but you must be chronically sick or disabled

You may be eligible to receive the Education Maintenance Allowance (EMA) award if:

• you are above the compulsory school age

• you will be aged 16, 17 or 18 years old on or before the 31 August

• you normally live in Wales

• you are studying an eligible full-time academic or vocational course

If you’re a resident of Denbighshire and are struggling to pay your council tax, the council tax reduction scheme can help you pay your council tax if you’re on a low income. Any amount awarded is credited directly to the council tax account.

Are you looking for information and support on welfare benefits and charitable grants? Turn2us - provides information and support about welfare benefits and charitable grants through an accessible website and a freephone helpline.

Citizens Advice website provides information on a range of benefits and tax credits if you are working or unemployed, sick or disabled, a parent, a young person, an older person or a veteran. There is also information about council tax and housing costs, national insurance, payment of benefits and problems with benefits.

If you don’t have enough money to live on, you might be able to get help to afford essentials like bills and food. This includes the Household Support Fund and cost of living payments.

Personal Independence Payment (PIP) - is a benefit to help with the extra costs of disability if you’re aged 16 to pension age. To find out more and apply, click on the link Personal Independence Payment (PIP) - Contact or apply via the link below.

Universal Credit - If you are on a low income and you are not already claiming Income Support, income-based Jobseeker’s Allowance, income-related Employment and Support Allowance, Housing Benefit or Tax Credits, you may be eligible to claim Universal Credit (UC).

Cost of Living Payments 2023 – 2024 – If you need guidance on getting extra payments to help with the cost of living you can find out more via the link below.

You may be eligible for a Budgeting Loan if you’ve been on certain benefits for 6 months. This can be used for household items, rent in advance and travelling costs. A budgeting loan can help pay for:

• furniture or household items (for example, washing machines or other ‘white goods’)

• clothes or footwear

• rent in advance

• costs linked to moving house

• maintenance, improvements or security for your home

• travelling costs within the UK

• costs linked to getting a new job

• maternity costs

• funeral costs

• repaying hire purchase loans

• repaying loans taken for the above items

If you live in Flintshire and need advice on Housing Benefits here’s some information from Flintshire Council.

If you live in Denbighshire and need information about Housing Benefits, click on this link provided by Denbighshire County Council.

If you live in Gwynedd and need information about Housing Benefits, click on this link provided by Gwynedd Council.

Please do share any useful websites or support organisations focusing on cost of living so we can add them to the resources. Your support is very much appreciated.