Are you worried about the cost of care? We understand that if you’ve never had to think about it before, thinking about care costs can quickly feel overwhelming.
At Disability Positive, we understand that financial pressure is real, as is the emotional weight of living with a disability or caring for someone. Trying to work out what’s available, what you’re entitled to, and even just where start can feel like a full-time job on top of everything else you’re already dealing with.
The good news is that support does exist. The system can feel confusing, but you don’t have to work it all out on your own. This blog will help you understand what’s available and point you in the right direction.
Understanding Care Costs In England
Getting funding for care costs can cover many different situations. It might be for care at home, moving into a residential or nursing home, or accessing support services that help someone stay independent for longer. On average, disabled households face £1,095 a month in extra living costs? As a Disabled People’s Organisation (DPO) we understand that lived experience and that support with the cost of care is often essential.
How care costs are covered will depend on your situation. Some people have to rely on self-funding, paying out of their savings or income, while others receive help from their local Council or NHS. What you might be entitled to is decided by a formal assessment process.
Help with Care Costs
The starting point is a care needs assessment, carried out by your local authority. It looks at the kind of support you actually need day-to-day. These assessments can take up to 4 to 6 weeks and councils will usually prioritise assessments on how urgent the care needs might be.
How The Assessment Works:
The assessment is a chance to talk about your physical, emotional, and social needs. Through a simple conversation, they can help identify any day-to-day activities you might find difficult and what support could help you stay safe and independent.
What The Assessment Includes:
Daily tasks:
Looking at how easy or difficult it is for you to wash, get dressed, prepare
meals, and move around safely.
Health conditions:
Talking about any physical or mental health conditions and how they affect your everyday life.
Your safety:
Discussing any concerns, such as falls, managing at home, or feeling isolated or lonely.
Your wishes:
Finding out what matters most to you, your goals, and how you would like to live your life.
Carer support:
Looking at the help you currently receive and whether your carer may need any additional support or a break from caring responsibilities.
If you have eligible needs, a financial assessment will follow to determine how much the council will contribute. A lot of people assume they won’t qualify and never find out what they might have been entitled to, so it’s always worth asking.
How Care Funding Works
The assessment process will decide what kind of funding you are entitled to and how much it is worth.
Personal Budgets from your Local Council
If you have a Personal Budget from the council you’ll usually get this as a Direct Payment. Getting a Direct Payment gives you more choice and control in how your care is delivered, who helps, and when.
You can ask the Council to pay your Direct Payment to a supported bank account (Bolton Council), or to a separate bank account in your own name, or to someone you’ve asked to help you manage the payments.
Personal Health Budgets from the NHS
If you have a Personal Health Budget (PHB) there are different options for how to manage it. You can ask the NHS to:
- Manage it for you (a notional budget, only available if you use an agency)
- Pay it to an organisation that manages the budget on your behalf (a Third Party Budget)
- Pay it directly to you, or someone you’ve chosen to help, or via a supported bank account (a Direct Payment).
You can also watch our video (Link) for more information about this.
Support For Unpaid Carers
If you’re an unpaid carer, it’s easy to forget to look into what’s available for you. Carers can request their own needs assessment from the local authority, separate from the person they care for, which can lead to practical help like respite care or local support groups.
NHS Continuing Health Care Funding
You may be eligible for NHS Continuing Healthcare (CHC) funding, a package of free care offered by the NHS for those aged 18 and over. Whether or not you can get it is based only on your health needs, not your income, savings, or anything else you own. CHC funding can help cover the cost of care, whether you live at home, in a care home, or in another care setting.
We know the CHC process can feel complicated and overwhelming, but you don’t have to navigate it alone. Our advocacy team has experience supporting people through assessments, reviews, and appeals. Unlike other providers, we work on an hourly-rate basis, so you only pay for the support you need, whether that’s answering questions, helping with assessments, or challenging a decision on your behalf.
What Happens In A CHC Assessment?
1. Checklist Assessment
A nurse, social worker, or other healthcare professional will complete an initial screening called the Checklist. They assess 12 areas of need, known as “domains”, to determine whether a full assessment is needed.
2. Full CHC Assessment
If the Checklist indicates you may be eligible, a Multi-Disciplinary Team (MDT) will carry out a more detailed assessment. They will consider how your needs affect your daily life, how complex they are, how much support they require, and whether they are unpredictable.
3. Decision
After your CHC assessment, a specialised team will then decide if you qualify for CHC funding. If approved, the NHS will then organise and fund your care. However, if you are not eligible for funding, there is a
, and we can support you in challenging the decision.Fast Track Assessments
If someone is approaching the end of life, a Fast Track CHC assessment may be available. This process allows care and support to be arranged quickly, helping to make sure that the right care is in place when it is needed most.
What To Do If You’re Worried About Care Costs
If you’re worried about care costs or unsure what support you may be entitled to, Disability Positive can help you understand your options. If you’re not sure where to start, visit our website or contact our team for guidance around care funding, NHS Continuing Healthcare and Advocacy support. We’re Here to Help.
