Act Now – #MakeCareFair Campaign
The Government’s proposed social care reforms will discriminate against Disabled people with the lowest income and wealth
New research shows devastating impact of social care charging
Ahead of International Day of Disabled People, new research has shown the devastating impact that social care charging has on Disabled people. The research was done by former BBC journalist Claire Bolderson as part of University College London (UCL).
The report discusses the experiences of Disabled people and their families, including where social care charging increases have forced Disabled people to stop their care. The report includes quotes like the following:
“She (daughter) is now scared to wash her clothes more than once a week because it’s too
much money for the water and the electricity.”
“I just can’t describe how unbearable it is. It is the most dismal place to be where you’re so cold.”
“I wash my hair once a month that why it’s always covered. Shower maybe once or twice a
week. Flat is usually a Tip. I don’t eat great” (Person who has ended LA care because of
the rising charge)
Take action and write to your MP
Why is this happening?
Social care is not free. It is means tested, looking at both your capital (savings) and income. People who have no capital must still pay for social care from their income which includes pensions and state benefits.
Consequently, many disabled people have no choice but to to give up welfare benefits and use this money to pay for vital social care. This is unfair and unjust as benefits such as DLA, PIP and AA are paid in light of the extra life costs disabled people and their families face. Scope estimates on average, Disabled people face extra costs of £583 a month as more is spent on essential goods and services like heating, insurance, equipment and therapies.
Those benefits are first drained to pay for care, leaving us with little else to cover our other essential costs. Our safety net slips through our fingers.
What we are calling for?
In the long run, we want social care to be free, like the NHS. The NHS helps us stay in good health whilst social care supports us to live a good life. Both are essential.
In the short term, we want the government to protect everyone from catastrophic care costs. We believe those who have to give up a significant proportion of their welfare benefits or pensions to pay for care also face catastrophic costs of care. It is not right that people who need support to live an everyday life are forced to choose between heating and eating because of social care charging.
- In addition, through secondary legislation, the Government should:
- Exclude means-tested benefits and extra costs benefits from the social care income means-test;
- Substantively raise minimum amounts people are left with after they pay for care.
We need to make noise – share your experiences on social media
We are calling on Disabled people and carers to share their experience of drawing on social care and charging for care. What impact does having to pay for care has on you? What do you have to go without? What would you be able to do if you did not have to pay for care? Do you feel you can live a good life, save and plan for the future? If not, why not.
We need to make some noise.
Please share your views on social media using the hashtag: #MakeCareFair
Case study – Julia
I am Julia, a 60-year-old with multiple autoimmune conditions that have ended my career, limited my mobility, and left me needing care from my husband primarily and from carers.
My current care plan is for nine hours a week through Direct Care. My Social Worker is requesting an additional three hours a week for me. I am fortunate that my husband does a large portion of personal care. My needs vary from day-to-day. My care plan highlighted my social isolation and my husband’s dire need for respite.
Before requesting help, he worked full time as a Social Worker but every time I fell the alarm people would call him as we have no other family. Finally, he was so stressed trying to care for me and do his job that he had a breakdown and subsequently lost his job.
My carer takes me to all medical appointments and social situations such as pottery and the cinema. I have received this care for five years, and it has benefitted both myself and my husband tremendously.
I have not had to pay for my care until I turned 60 and my occupational pension kicked in. I have £506 pension and suddenly, I got charged £78.70 per week. With increases in food prices and energy prices hiked, I have had to consider whether I can continue to have my carer.
I suffer from depression due to chronic ill health, isolation and the mere thought of giving up my carer makes me very distressed. I also worry about the adverse effect on my husband, who would then have to provide 24/7 care and he is 68.
I get a portion of my ESA Contributions Based, and I get the higher rate of PIP for both mobility and care. I had thought that once I got my pension, having worked for 23 years before becoming ill, we could afford a holiday, something we haven’t been able to do for years, but that is not going to be possible now. So I think when the energy price hike starts to affect us, we will have to cut down on food heat and actually may have to terminate the care package.
Case study – Barbara
I thought I would share my story regarding my mother, who has dementia, being charged for social care support. My mother has been contributing to the cost of her care from her pension for several years now.
At the end of 2020, following the death of her husband, she was assessed as requiring what was considered as significant support ie 2.1/4 hours per day, as she is unable to look after herself safely. She contributes £360 per month towards her care. However, as she requires 24-hour supervision, this leaves very little money from her pension to contribute towards the cost of a fulltime PA who supports her as there is no one available to do this because of family commitments. Therefore, I have to contribute to half the cost of her overall care, leaving my family and me with very little to manage on a day-to-day basis, let alone have any extra treats.
I find it ridiculous that although we are technically saving the local authority money by keeping our mother at home, instead of putting her into a residential care home that would cost so much more, we are being penalised.
I welcome anything that can be done to challenge this ruling and perhaps even enable my mother to have some money left to pay for her funeral arrangements eventually.
Case study – Anonymous
I have a young adult who is 19 years old, has a medical condition, has high, complex needs, and requires 24-hour care. She receives both the enchanted rate for care and the mobility component. I am unemployed and receive a carer’s allowance. My daughter lives with me at our family home.
Her child benefit and child tax credit award, which includes the disability element and premium, runs out on 5 September 2022. My daughter will then be classed as a non-dependant child.
She has to apply for either employment and support allowance/Universal Credit in her right.
When she starts receiving the benefits, she has to make a £26 contribution toward her social care needs. My young daughter will never be ready for work and is very high maintenance to meet her needs. She is not aware of money affairs so that the financial burden will be on me, in addition to my demanding caring role.
The council tax team also told us that she should contribute toward the non-dependant adult council tax deduction as she receives PIP which counts as a source of income. I also have to apply for an exemption to be put in place under the local government and financial act 1996. I am still waiting to hear from the council tax department.
Case study – Zoe
Zoe has been disabled since she was young and now has a more severe impairment following an illness. In recent years she has faced cuts to the support she receives from adult social care and increases in the charges she has to pay for the support she does get.
Zoe received five-and-a-half hours of care a week, which she said was right for what she needed. But this was cut to three hours, and she decided to make her own arrangements without involving adult social care.
After two years of doing this, Zoe’s GP encouraged her to get a re-assessment. So she asked for a re-assessment but was concerned about having to pay if she got more support. When it turned out that the charges would be even higher than she had paid before, Zoe asked for support from an advice and advocacy service to clarify why the cost had increased. Over three months, they tried to get a breakdown of the calculations made by the Council and look at whether the charge could be reduced.
This proved unsuccessful, and Zoe decided, ‘it was just pointless dealing with them as I did not get any benefit and it was just a lot of unnecessary stress.’