Annette doesn’t need care at the moment, but is doing some research now to make sure she knows how the system works and what options she has for paying for her care. Read Annette’s story
John helped his mother, Mary, to organise her care. Mary is a self-funder, but has received some financial help through the 12-week property disregard and benefits she is entitled to claim. Read John’s story
Our Helpline can provide expert advice on social care and support. We often receive calls from people who need some help to understand how the system should work. Knowing a bit about your rights can help make sure you’re getting everything you’re entitled to, as this story shows. Read Emma's story
Samuel helped arrange care for his mother, Jean. They initially had some problems arranging a care needs assessment with the council and have found it challenging to work out their options for paying for care. Read Samuel’s story
“I had one experience of getting care at home. When I had a hip replacement in January 2016, my treatment in hospital and afterwards was excellent. I received six weeks’ free care at home while I recovered and got back on my feet and some physio that lasted a bit longer. The hospital co-ordinated everything and also involved the Red Cross, who were very helpful. I didn’t have to do anything.
It’s very different when you’re ‘outside’ the system and trying to find out information about care. It can be overwhelming. I’m fit and healthy at the moment, but some of my friends are less fit and we do talk about our worries about getting care if it’s needed. I haven’t had to contact social services yet, but I live on my own, so I want to find out about care and support and how to pay for it before I might need it. I have children, but they don’t have any experience of the care system either, so we’re all starting from scratch.
I have picked up a few leaflets locally. I thought I knew everything, but I didn’t. There are so many systems and processes. I consider myself intelligent and articulate, but it would be extremely difficult if you struggle with reading or don’t speak English, for example. When you’re worried and not well, you just want things to be easy to understand."
Our Helpline Adviser Caroline says:
“Arranging and paying for care is a really complex area. We often receive calls on the Helpline from people who are having to make decisions about their care in a hurry and don’t know where to start. It’s wise to do some research in advance, and to start thinking about how you might pay for your care if you’re not likely to qualify for financial assistance from the council.”
John’s mum Mary is in the early stages of dementia. Mary was living in her own home, but fell down the stairs and had to go into hospital.
Before she was discharged from hospital, Mary had a free care needs assessment from the council’s social services department, which John and his sister were involved in. Initially, social services thought Mary could manage with carers at home, but John and his sister didn’t think she would be safe because she was becoming more forgetful and had had several falls. Social services agreed that a care home would be the best option.
Mary then had a separate financial assessment. As her capital was less than £23,250, apart from her home, the council disregarded the value of her home and paid a proportion of the care home fees for the first 12 weeks after she moved into the care home. The end of the 12-week property disregard coincided with the sale of Mary’s house. Once her house was sold, Mary had over £23,250 in capital, so she became a self-funder.
Before moving, Mary was receiving Pension Credit and Attendance Allowance. The sale of her house meant that her Pension Credit stopped. Her Attendance Allowance stopped while the council was contributing to the care home fees, but restarted when she became a self-funder.
“I already knew quite a bit about the processes to go through from arranging care for my father and my wife’s parents had also needed care. I did lots of searching online and made phone calls. I’d also been to some local talks by the Alzheimer’s Society, which were helpful. However, each person’s situation is different. With Mum, trying to work out what happened to her benefits in different situations was quite complicated: first when she went into hospital, then when she moved into the care home but hadn’t sold her house, and then when her house sold.
The finance team at the council and other people we spoke to were helpful, but when you’re told everything upfront, there’s a lot to take in. It’s very complicated. Some things weren’t obvious, especially when people used different terms for the same things. It sometimes felt like I was fumbling my way through, but it did become clear in the end. It would have been very helpful to be told the right information at the right time, rather than all at once. My advice for other people is, don’t be afraid of asking questions and asking people to explain jargon if things are unclear.
Mum is happy in the home and I know what to do if her savings do run down.”
Our Helpline Adviser Caroline says:
"Even if you’re likely to be self-funding in the long-term, it’s helpful to reach agreement with your council’s social services department about the type of care you need. If social services hadn’t agreed that Mary needed to be in a care home, it’s unlikely they would have granted the 12-week property disregard while she was selling her home.
Benefits can be complicated. It’s important to claim what you’re entitled to but also to let the Department for Work & Pensions know when there is a change in circumstances – for example, if you go into hospital or move to a care home. Attendance Allowance is not means-tested but in can be stopped in some circumstances. Call our Helpline (0800 319 6789) to arrange to speak to an adviser or to arrange a free benefits check."
A story from Emma, our Helpline adviser
Emma, an Independent Age Helpline adviser, says: ‘We received an email from a gentleman who was trying to find a care home for his 97-year-old mother.
He had already done some research into care needs assessments and found out that they are a good starting point. However, when he asked the local council for an assessment, he was told that because his mother would be ‘self-funding’ her own care, she did not qualify for an assessment.
He told the council that he had read that everyone was entitled to a free care needs assessment, but the local council repeated that as his mother was above the threshold for financial help, she wouldn’t get an assessment. The council told him that once they had chosen a care home, it would be up to the care home to carry out its own assessment.
He was very concerned and confused about this as he wanted to find a care home that could meet his mother’s needs, rather than a choose a home before her needs had been assessed.
I replied saying it appeared that the local council wasn’t acting in accordance with the Care Act 2014. I explained that this clearly states that if someone appears to need care and support, the council must carry out a free care needs assessment regardless of the person’s financial situation.
I told him that it would be useful for his mother to have a care needs assessment even if she would be self-funding as it would give them a better idea of the type of care she needed and in what setting. He was reassured by our confirmation of what he had read and said that he would contact the council again.
After following our advice, he secured a care needs assessment for his mother. Following the assessment, she was getting a higher level of Attendance Allowance, as well as some free physiotherapy to help avoid falls, and visits from a district nurse from the NHS. She was due to move into a care home in the new year, with lots of family nearby.
Our Helpline Adviser Caroline says:
"Councils must carry out a free care needs assessment if you appear to need care and support. They have a duty to do this whatever your level of need or financial circumstances. They must not charge you for the assessment either. They should do an assessment within a reasonable time, taking into account how urgent your needs are. If your council has refused you an assessment, or if they’re trying to charge you for an assessment, call us on 0800 319 6789 to arrange to speak to an adviser."
Samuel’s mother, Jean, is 83 and has middle stage Alzheimer’s. Jean was matter-of-fact about the diagnosis and was prescribed daily medication by her GP. For a couple of years, she lived independently in her own home, with Samuel and his sister visiting weekly. However, she then began to forget to eat. The family requested a care needs assessment from the local council, but it was carried out over the phone and the council concluded that everything was fine. Samuel tried to tell them that his mother had Alzheimer’s and wasn’t fine, but they disagreed. This was the catalyst for deciding Jean should move. She sold her house and moved to a bungalow near Samuel.
For a couple of years, Samuel cared for his mother with his sister helping at weekends. Later, a succession of local care agencies provided half-hour daily visits. This turned out merely to be a sticking plaster covering the cracks. A different carer would come every day so no relationship could be built up. Also, there were many things they couldn’t do and they weren’t fully trained to deal with a person with Alzheimer’s.
A local care home provided a day centre place for one day a week; sometimes Jean liked this and sometimes she didn’t. Samuel and his sister didn’t approach the council for any support as their mother had assets taking her above the £23,250 financial threshold for help and their previous dealings with a local council didn’t inspire confidence. They did claim Attendance Allowance for Jean and she was awarded it at the lower rate.
Jean had a couple of falls, which caused her a great deal of distress, and her children realised she now needed safer and more regular care. They began to look at local care homes.
The family visited a large number of homes within a 40-mile radius of Jean’s home. They felt there were some terrifying examples of poor care and Samuel and his sister despaired of finding somewhere suitable. Luckily, an acquaintance of Samuel’s told him about a special dementia unit that her mum had been accepted into. It was a small care home providing a family-oriented, safe, cheerful environment. They went to visit and asked for Jean to be put on the waiting list. They had a three-month wait before a room became available.
Jean has settled in well. The cost is in the region of £3,500 per month and she is self-funding. On top of her State Pension, Jean has her late husband’s occupational pension. She has also now been awarded the higher rate of Attendance Allowance. Despite this, she has to use her savings each month to pay the fees.
Samuel has had to navigate the financial aspects of caring for his mother by himself. He consulted a financial advisor at the beginning, but mainly uses the internet to obtain relevant information. Samuel told us: “Looking for a care home is very tiring, complicated and time consuming, and the situation is so emotional it’s difficult to make clear decisions. It requires immense planning and organisation, and having power of attorney is invaluable. It’s never going to be perfect – you can only do your best.”
Our Helpline Adviser Caroline says:
"Councils should only use phone or online care needs assessments where appropriate. The statutory guidance accompanying the Care Act 2014 (the law on care and support in England) says: ‘Where there is concern about a person’s capacity to make a decision, for example as a result of a mental impairment such as those with dementia, acquired brain injury, learning disabilities or mental health needs, a face-to-face assessment should be arranged.’ If you’re concerned that you’re being given an assessment that isn’t appropriate for your needs, call us on 0800 319 6789 to arrange to speak to an adviser. An assessment is free and it will give you an expert opinion on what your needs are. This can be really useful to know if you’re trying to find a care home suited to your needs, for example. We’d recommend you ask your council for a care needs assessment even if you know you’ll be self-funding.
Many people are worried that they may have to sell their home to pay for care. If you’re concerned about this, make sure you get financial advice. There could be other options available, such as a deferred payment agreement. Internet research can be a useful starting point, but paying for care is complex, so it’s a good idea to get advice. Call us on 0800 319 6789 to arrange to speak to an adviser."