Written evidence from Sense CLP0050

About Sense

Sense is a national disability charity that supports the UK’s 1.6 million people with complex disabilities to be understood, connected and valued. Sense supports children, young people and adults in their home and in the community. Sense campaigns passionately for the rights of the people it serves, and offers practical help and support to families and carers, including information and advice, short breaks and family events.

Who does Sense support?

Sense supports people with complex disabilities including those who are deafblind.  our research shows that there are 1.6 million people with complex disabilities living in the UK today; just over 318,000 of these are children. People with complex disabilities tend to have two or more of the following conditions: deaf or hearing impairment, blind or vision impairment, learning disability or autism. They may have other needs as wellThese needs may be with a person from birth, or following illness or injury, or they may develop with age. 

The people with complex disabilities we represent often require significant or constant care and support from family members or social care, including support with personal care. Many of the people we support are also deafblind, including individuals with congenital deafblindness, and also those who are visually impaired or Deaf or Hard of Hearing who then acquire an additional sensory impairment. While those who have acquired deafblindness tend to have less complex care needs, they are still likely to have communication needs which require the right support.

Sense response to the inquiry

Our response to the inquiry seeks to set out why the cost-of-living support payments provided by government were insufficient.  We draw on our first-hand experience of supporting people through the cost-of-living crisis as well as our over 65 years of knowledge and expertise as an organisation.  

For the first time since our organisation began, we have had to step in and provide direct financial support to the families we deliver services with and for.  This was not a decision we took lightly, but we felt we had to step in where government did not.  We highlight our learning and findings from this process in our response and would gladly give further evidence to the committee about the steps we took. 

The bulk of our response is responding to the inquiry question of: ‘To what extent have the cost-of-living support payments been sufficient at helping eligible households meet the cost of essentials such as food and electricity?’.

Summary

Recommendations

The disproportionate impact of the cost-of-living crisis on people with complex disabilities

Even before the cost-of-living crisis, disabled people faced higher living costs that weren’t being met by their benefits payments. Ongoing costs can include:

Our research has found that, even before the cost-of-living crisis: [1]

As the research above was based on data collected in 2020/21, rising prices since then will have made the situation even worse for people with complex disabilities.  This data clearly shows that disabled people and their families were entering the financial crisis with much less financial resilient than other households.  Not only were they more impacted, but they were also less able to weather the storm.

The cost-of-living payments didn’t cover the essentials

In May 2022 Sense conducted research which found that despite the additional support provided by the Government disabled people were still struggling:

The people we support have told us that they had already faced extra costs in excess of the cost-of-living payments. This means that the additional support did not even cover their increased costs up to the point at which the payments were made, let alone prepare them for costs that continue to rise.

The cost-of-living payments are one-off, but the extra costs faced by people with complex disabilities are not.  One-off payments are simply not enough to help people with complex disabilities to deal with the cost-of-living crisis; an ongoing crisis needs ongoing support

“The £326 cost of living payment from the government this month has gone straight into utility bills. We can’t do anything else with this money.”  Keith, a full-time carer for his adult disabled son, Geordie.

How Sense stepped in: our own cost of living support fund

As evidenced above the government’s cost-of-living measures did not do enough to support people with complex disabilities through the cost-of-living crisis.

Our services heard how people with complex disabilities were struggling with parents cutting back on food or using food banks; families having to leave soiled clothes unwashed to save on energy and people struggling to afford to run lifesaving medical equipment.

We couldn’t stand by and see the people we support being so badly let down by government any longer. Sense felt the need to step in and provide direct financial support; something we have never done before.

To respond to this need Sense, in partnership with Turn2Us, distributed grants to disabled households who used Sense services and who were facing profound financial hardship.  We initially provided families with £500 but issued a further payment of £250 after Christmas as feedback showed the crisis was continuing. 

Sense found that people with complex disabilities and their families were particularly worried about[2]

“We have been unable to have any heating on this year. We are cold. My house is damp. My gas bill is still very high. I’m always in my overdraft I can’t keep up. I’m going to have to use a food bank soon”Respondent to a Sense 2023 survey.

Who we helped

The majority (69%) of the households we helped were families with disabled children. 21% of households lived with a disabled young person and 10% with a disabled adult.

People used the grant for essentials

The majority of recipients needed the money for energy bills (59%) and food (55%)

This evidences just how insufficient the government cost of living support payments were.  Even with those payments, families were still behind on energy bills, food costs and other essentials. 

The grant has supported people through this crisis.

“One of us gave up their career to be a full-time parent carer to our two disabled children. We’re so grateful for the grant which will help us keep afloat and not have to make as many hard choices to afford living in London.”

It is stressful enough being a carer for a child with special needs without the worry of the cost of living. The price of everything has soared. It is an extremely worrying time for families. Receiving the grant from Sense was so greatly appreciated!

These are just a few examples where our grant has made a difference to the lives of people with complex disabilities.

Catherine from Cambridgeshire also received one of our grants. Catherine cares for her 22-year-old son Jack. Jack has cerebral palsy, epilepsy and a learning disability. Catherine told us about the additional costs that her family faces:

“Because of Jack’s condition, he requires the support of specialist, essential equipment that needs to be constantly plugged in, using a lot of electricity, including a food pump, electric hoists and power chair. Our electricity and gas bill right now is more than £200.

 “Then there is the additional water consumption that is required for personal care and additional laundry of clothing and bedding. And also, the cost of driving Jack to college each day.”

With support from the Sense Cost of Living Support Fund, Catherine has been able to cover essential costs.

“The £500 we received from Sense’s support fund will pay for the repairs to the powerchair, which is a huge relief,” says Catherine. “Without it, we may have gone into debt. Having to constantly think and worry about the additional costs is horrible and it makes me quite low sometimes. You just don’t know where to go to for support. Government needs to do more to help with the cost-of-living crisis and social care costs families like ours are facing.”

Sense’s fund gave disabled households some desperately needed support, but it isn’t a solution to the wider problem. The poverty crisis impacting so many of our families will not be solved by one-off grants, neither should it have to be.

The need for long term change

Whilst there were steps taken by the government to tackle the challenges faced by disabled people, we believe that there is more that should and could be done.  The extra costs disabled people and their families face are disproportionate and can’t be solved by one off cash payments.  There are number of areas where Sense would like to see longer term policies introduced and implemented.

Tackling the costs of energy for disabled people

We welcomed the introduction of the Energy price guarantee however this did not provide adequate support for people with higher energy usage. People with complex disabilities are likely to face higher energy costs as a result of, for example, the need to run specialist equipment.

The energy price caps the cost of each unit of energy, rather than capping total household energy bills. People with higher energy usage – including many people with complex disabilities – have been disproportionately affected by the price increases despite the price cap.

In surveys carried out by Sense across 2022 and 2023, we heard just how difficult it has been for people with complex disabilities and their families to afford their higher energy bills.

 

“We have been unable to have any heating on this year. We are cold. My house is damp. My gas bill is still very high. I’m always in my overdraft I can’t keep up. I’m going to have to use a food bank soon

 

“Currently have a broken boiler we can't afford to repair so have no heating or hot water other than the kettle and electric shower. There just isn't any spare money left in the kitty for emergencies. We are buying less and less food each week as everything is going up.”

 

Despite the cost-of-living measures, the Government’s changes to the eligibility criteria for the Warm Homes Discount mean that up to 300,000 disabled people lost out on the annual discount to their energy bills in October.

The group that will miss out on the discount includes those who receive only PIP/DLA but not means-tested benefits. This is the same group who will receive just £150 in cost-of-living payments as a result of the Chancellor’s announcements.

 

Coincidentally, the Warm Homes Discount also comes to £150. This means that, for some people, the cost-of-living payment will only cover the loss of the Warm Homes Discount, meaning the cost-of-living payment will have no impact on their ability to pay for higher energy bills.

The need for a social tariff

As well as seeing the current eligibility rates retained, we also want to see additional support for people with complex disabilities who have higher energy needs.

We are calling for the introduction of a social tariff for energy costs.

This would mean discounting the cost of energy use for specific groups. That includes households receiving a low income and groups, like disabled people, who face specific barriers to affording energy bills. 

In their 2022 report, Solving the Costs of Living Crisis’ Fair By Design and National Energy Action set out the case for a new social tariff in the energy market, arguing that a new social tariff should:

By taking forward proposals for a social tariff, the government can both address the immediate need for support, and build a sustainable way to help people with complex disabilities to manage extra costs in the long term.

Expanding the energy rebate scheme

As referenced above disabled people rely on numerous pieces of medical equipment which use large amounts of power and they cannot claim rebates for the extra expenses incurred.

People can currently get financial rebates from NHS trusts for the electricity used by for Oxygen Concentrators and Haemodialysis machines.

Sense is calling for the list of equipment eligible for rebates to be expanded to other vital pieces of medical equipment. Sense understands that the government is planning to consult on this scheme. The consultation needs to happen as soon as possible and needs to engage with a wide range of stakeholders.

 

Reviewing the benefits system

Long before the cost-of-living crisis, people with complex disabilities were receiving benefits at rates which did not allow them to lead meaningful lives. The measures outlined by the Government would not even cover the rising cost of essentials, let alone allow people with complex disabilities to lead fulfilling leaves.

 

We understand the committee is looking at benefit reform in another inquiry which we have submitted evidence to calling for:

 

The need to offer specific support for those who care for people with complex disabilities

Caring for anyone is expensive, but the extra costs faced by disabled people mean that is even more expensive if you care for a child or adult with complex disabilities.

Sense polling carried out in May found, over 60 per cent of people who care for a disabled adult or child said rising prices for essentials such as energy and food had put them in debt over the past year.

The Government’s latest package of support, however, offers no specific support to unpaid carers or families with children with complex disabilities.

The Government should set out how it will provide specific ongoing support to unpaid carers and families with children with complex disabilities.

 

 

May 2023

 


[1] https://www.sense.org.uk/about-us/statistics/complex-disabilities-cost-of-living-sense-natcen-research-briefing/

[2] Sense. What was the impact of our cost-of-living fund. Available Here: https://www.sense.org.uk/about-us/our-impact/what-was-the-impact-of-our-cost-of-living-support-fund/