This submission aims to support the ‘lessons learnt’ report being prepared by the committee by showcasing the experiences of people with complex disabilities last winter. We draw on our first-hand experience of supporting people through the cost-of-living crisis, commissioned polling and over 65 years of knowledge and expertise as an organisation.
Sense supports people with complex disabilities including people who are deafblind, as well as those with learning disabilities, autism, sensory impairments and complex health conditions. Sense research has found that 1.6 people have complex disabilities in the UK – 1 in 10 disabled people. This number is projected to increase to 2 million by 2029. 
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 well. These needs may be with a person from birth, or following illness or injury, or they may develop with age.
For the first time since our organisation began, in 2022 due to the cost of living crisis we 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 act 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 in this inquiry or any future inquiry.
– Introducing a social tariff for energy
– Expanding the list of specialist medical equipment eligible for power rebates
– Reinstating the Warm Homes Discount for disabled people who claim only PIP/DLA
– Reviewing the levels benefits are set at so that people can afford basic essentials.
Even before the cost-of-living crisis, disabled people faced higher living costs, ongoing costs can include:
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 additional £150 payment to people claiming disability related benefits
– The £650 payment for people on means tested benefits
– Energy Price Guarantee Scheme
– Bill Relief Scheme
– The Household Support Fund
While the additional support was welcomed, it also came at the same time as some support being removed. In October 2022 the Government changed the eligibility criteria for the £150 Warm Homes Discount meaning that up to 300,000 disabled people lost out on the annual discount to their energy bills. This meant that, for some people, the cost-of-living payment only covered the loss of the Warm Homes Discount, meaning the cost-of-living payment had no impact on their ability to pay for higher energy bills.
The communication on the energy price guarantee scheme and the use of the term ‘cap’ was misleading. The promotion of the scheme focused on the usage by an ‘average household’ and implied it was an overall cap on bills, rather than a cap on energy unit price. Disabled people need to use more power than the average household and so their bills were far higher than the advertised ‘cap’.
We were pleased to see explicit reference to disabled people and families in the eligibility criteria for the Household Support Fund (HSF). However, whilst this was positive investment, we have heard anecdotally that there has been geographic variation in how it’s been delivered and had impact. Local authorities have used the funding in different ways that haven’t always met needs, as well as having varying levels of information available on how people can request support. The HSF mechanism also depended on families already having contact with their local authority or having to reach out. We know that many disabled people and their families aren’t connected to their local authorities due to lack of funding for services. In addition, there can be a stigma or fear associated with contacting your local authority if you need support.
The people we support 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 were 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.
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.”
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
“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.
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.
The majority of recipients needed the money for energy bills (59%) and food (55%)
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.”
As outlined above, disabled people need more support with their energy costs, we believe that this needs to be done through the introduction of a social tariff for energy.
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.
Sense agrees with the principles set out in the 2022 report, Solving the Costs of Living Crisis’ Fair By Design and National Energy Action where they argue that a new social tariff should:
In addition, we believe that a social tariff should include:
There is precedent for schemes similar to this. Including the broadband social tariff for people in receipt of benefits and the WaterSure scheme which caps water bills for people who are either: on means tested benefits, have a medical condition that requires extra water or three or more children at the property.
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.
As stated above the Government changes to the eligibility to the Warm Homes Discount meant that thousands of disabled people were no longer able to claim it. The Government should reinstate the Warm Homes Discount for disabled people who claim only PIP/DLA. It should also increase it from £150 to allow for the increase in energy bills.
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 research conducted between 04.05.2022 - 10.05.2022 of 1,004 respondents with complex disability and 1,001 parents/family members caring for a disabled person
 Rising costs in the UK push more than half of disabled households into debt - Sense
 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/