A plan for change: Improving the lives of people with complex disabilities 

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The outcome of the upcoming 2024 General Election will have a huge impact on the lives of disabled people.  

Disabled people make up 22% of the UK population. One in 10 disabled people – that’s 1.6 million in total – has complex disabilities. 

This large population faces daily inequalities, isolation and exclusion from society. 

The world has changed significantly since the last UK General Election in 2019. Disabled people are struggling to pay for essentials like food and energy. The social care sector is in crisis, and the welfare system is in urgent need of reform. 

It is vital that disabled people are a top priority for the next government. In this manifesto, we set out seven key recommendations for how the next government can improve the lives of disabled people:

  1. Make sure disabled people can afford the essentials.
  2. Fund social care so no disabled adult goes without support.
  3. End the postcode lottery of social care for disabled children.
  4. Give every disabled child equal access to education.
  5. Make the benefits system work for disabled people.
  6. Tackle barriers to work.
  7. Always have a senior Minister for Disabled People.

We urge all political parties to endorse these seven essential asks.  

The next UK government has a real opportunity to make a meaningful difference to the lives of millions. Disabled people, along with their friends, families and carers, will be watching closely.

Foreword: Why this election matters to me

Emma Blackmore 

Emma Blackmore, a white woman with short hair and glasses, smiling at the camera.

This General Election is a pivotal moment for disabled people like me. 

I’m Emma, and I was born with congenital rubella syndrome which affects my vision and hearing.  

The cost of living is a key issue for me at the next election. All the costs going up are worrying me. Rent and bills are going up constantly. It’s worrying and challenging. 

I have to be careful about what I’m spending, and rely on others to help me through the month. I’ve been borrowing money from my mum.  

The rise in energy bills is the cost that’s affected us the most. It’s taken a massive leap. It’s hard because we’ve got medical equipment that has to keep running through the day and night. 

We’re struggling to put the heating on. This has a big impact on me, because I have arthritis. I feel physical pain when I’m cold.  

We can’t go out and about and do things like we used to. We haven’t had a holiday this year. We just can’t afford it.  

The support we have received so far isn’t enough to get us through this crisis.  

We’re still people, we have a right to be able to live an independent life. A lot of people, like me, can’t physically work full time. If we can’t keep up with putting food on the table, it’s really not fair. 

Money is not the answer to everything, but at the moment it’s something quite significant.  

The shortage of SEND provision in school also needs to be addressed. There is a generation of children not getting what they need educationally or socially. This will affect them long-term.  

I did not get the support I needed at school so spent a lot of time at home and the socialisation I missed out on still affects me today. 

Disabled children must be given the best chance to be whatever they want to be. 

The next government really needs to listen to our stories. They need to really, really listen to how these issues affect us, not just financially, but physically and mentally, too, and put more support in place. 

Anna Tesdale  

Anna with her son, Charlie, smiling in the sunshine.

As a mother and carer of a disabled child, and on behalf of thousands of families like my own across the country, this General Election is such key moment for us.  

My son, Charlie, has a genetic condition called SPG11, which means he needs a lot of assistance, like an electric wheelchair and hoist. Keeping him warm is vital as he can’t monitor his own body temperature. As a result, our energy bills are excessively high – and in the winter, the money put on the prepayment meter gets spent straight away.  

My situation is sadly not unique. Disabled households like mine are struggling right now. The next government, whoever it may be, needs to make sure disabled people and their families are no longer feeling neglected and fearing for the future.  

Last year, I joined Sense with more than 80,000 people to call for more support for disabled people to cope with the cost of living crisis. I urge the next government to listen to our call and put disabled people at the heart of everything they do. It’s not fair that disabled people pay the heaviest price during this crisis.    

The cost of living is not the only issue facing people with complex disabilities, their families and carers. The adult social care sector is underfunded, children’s social care needs to be prioritised, support for SEND (special educational needs and disabilities) provision is lacking, and the welfare system desperately needs reform.  

There should also be no excuse for parties and candidates not making their communications accessible, especially if they follow Sense’s simple accessibility guide.  

Let’s make this election count for people with complex disabilities.

Who are Sense? 

We are a national disability charity, supporting everybody who is deafblind or has complex disabilities.  

We believe that everyone should be able to take part in life, no matter their disability.  

Sense supports children, young people and adults in their homes and communities. 

We also campaign for disability rights and offer practical advice and support to families and carers. 

  

Who does Sense support?  

Sense supports people with complex disabilities, including those who are deafblind.  

There are 1.6 million people in the UK with complex disabilities. This will rise to 2 million by the end of the next parliament in 2029.  

People with complex disabilities tend to have two or more of the following: 

  • Deafness or hearing impairment; 
  • Blindness or vision impairment; 
  • Learning disability; 
  • Autism.  

They may have other needs as well. Most of the people we support need significant or constant care in their daily lives.  

Some of the people we support have had complex disabilities from birth. Others have developed complex needs due to illness, injury or ageing.  

Our seven key recommendations 

1. Make sure disabled people can afford the essentials 

Disabled people have been struggling financially since before the cost of living crisis began. Now, many are barely able to afford food and energy.  

Why does life cost more for disabled people? 

Disabled people may have: 

  • Higher energy bills, often due to higher heating costs or specialist equipment such as electric feeding pumps. 
  • Specialised dietary needs. 
  • Transport costs, such as taxis. 
  • Large one-off costs such as a powered wheelchair. 
  • Home adaptations. 

Before the crisis, we found that disabled people were already three times more likely to be both behind on bills and regularly unable to afford food than those with no disability.  

We also found that over half of disabled people had run out of food and been unable to buy more at some point.  

The cost of living crisis has put even more financial pressure on people with complex disabilities. In 2023, we found that:  

  • 7 in 10 people with complex disabilities (70%) were worried about how they would cope financially over the winter months.   
  • 68% of people with complex disabilities were worried about having to eat fewer meals during the winter months.   
  • 57% were turning their heating down or off because of the rising cost of living.   

This is an issue that is not going away and needs a long-term solution, not just quick fixes.

What we’re asking for

To make sure all disabled people can afford to heat and eat, we’re asking the next UK government to:

Introduce an energy social tariff

A social tariff is a lower energy tariff for people who struggle to pay their energy bills.   

Disabled people often face higher energy bills, so urgently need this support.   

Reinstate disability cost of living payments 

The cost of living payments awarded in 2022 and 2023 were a drop in the ocean for many people compared to rising costs, but they were still welcome. Disabled people need them to be reinstated, along with longer term support.  

Urgently set up an Extra Costs Task Force 

The National Disability Strategy committed the current government to establishing an Extra Costs Task Force. 

The next government should urgently set this task force up. They will comprehensively review the extra costs disabled people face, and work with markets and regulators to come up with solutions to address these. 

Improve the Warm Home Discount 

  • Reinstate the Warm Home Discount for disabled people who claim Personal Independence Payment (PIP) or Disability Living Allowance (DLA).   
  • Increase the amount awarded, to account for recent increases in energy bills. 

For more on covering the cost of essentials, see our recommendations on benefits.


2. Fund social care so no disabled adult goes without support

A man in a wheelchair wearing a blue t-shirt and smiling widely.

Adult social care is in crisis. People with complex disabilities are paying the price of chronic underfunding, with local authorities slashing support and providers struggling to find the care workers they need.  

A quarter of people with complex disabilities in the UK receive social care, but one in five don’t feel that they have the right support to meet their needs.   

A quarter of people with complex disabilities who receive social care had their care provision cut in the past year. Astonishingly, 15% had their care withdrawn altogether

It is inhumane to leave people without the care that they need.  

It is also unacceptable that the latest government data shows that over 2000 people with learning disabilities and/or autism are living in hospitals not homes.  

What we’re asking for

To make sure that every person with complex disabilities can access support, the next government should:  

Set out a 10-year funding plan for adult social care 

Make sure that providers and care workers are paid well for the care that they provide. This should include above-inflation rises each year.  

Make sure that the social care system does more than meet basic needs 

Empower disabled people to develop their independence, be involved in their communities, and build relationships.  

Invest in training, so that care workers can support, people to express themselves however they feel comfortable. 

Set out a fully-funded workforce plan 

Improve recruitment and retention in the adult social care workforce. This should include support for career development, and standardised pay/conditions for the sector.  

Make reforms with people with complex disabilities in mind 

Make sure that reform works for everyone who uses social care, whether they receive their care in residential care, supported accommodation, or in their own home.This should include disabled adults under the age of 65, who make up a third of people using social care.  

Bring home disabled people living in hospitals 

End the scandal of people with learning disabilities and/or autism living in inappropriate inpatient settings.  

This should be done by: 

  • Having appropriate mental health care and social care in place, so people don’t have to be admitted to hospital unless they need it. 
  • Taking urgent steps to integrate people back into their communities.  
  • Investing in high-quality, community-based support for people leaving hospital. 
  • Taking proactive preventative steps to safeguard those who are at risk.  

3. End the postcode lottery of social care for disabled children

A young boy wearing blue headphones laughing while he plays.

Many disabled children are not receiving the vital care they need.  

Despite being eligible for social care, disabled children are often deprioritised by an underfunded social care system that is struggling to handle many pressures.  

Children’s social care is a broad area, covering children in care, safeguarding and exploitation, children in prison, as well as providing services for disabled children. 

In a 2022 survey, only 15% of parents of children with complex disabilities agreed that they have access to all the social care support they need.  

Support is often only provided when families hit crisis point. This is too little too late.  

There are approximately 320,000 children with complex disabilities in the UK. Many of these children need daily support to thrive. 

What we’re asking for

To give disabled children the support they need, the next government should:  

Close the funding gap in children’s social care services 

  • Plug the in-year funding gap of £500 million in children’s social care services. 
  • Provide additional year-on-year ringfenced funding.   

Simplify the legal framework for disabled children’s social care 

Families should know their rights, and local authorities should know what is legally required of them. The current system allows for too much variation between different regions of the UK, as laws are interpreted differently in different areas. 

Represent disabled children in parliament 

Introduce a Minister for Disabled Children in the Department for Education.   

Give disabled children fair access to short breaks 

Two thirds of parents of children with complex disabilities say they cannot access the respite care they need. The next government must: 

  • Amend the statutory guidance on short breaks for disabled children to make access to short breaks equal across the country. 
  • Expand the Short Breaks Innovation Fund to all local authorities. 
  • Make it unlawful for local authorities to set artificial thresholds for short breaks assessments. 
  • Provide long-term funding for short breaks.   

Prioritise early intervention and communication support 

Early intervention is vital. We want services to work together so that young children with complex disabilities and communication needs can access the right therapies and support.  

Make family hubs accessible to all 

Family hubs should be accessible and inclusive to children with complex disabilities. Hubs should make sure they have the capacity and capability to support parents and carers with disabled children.    


4. Give every disabled child equal access to education 

A young child playing with an abacus.

Disabled children are being let down by our education system.  

Many are waiting far too long to get education, health and care (EHC) assessments and plans. Even when they have a plan in place, they’re not getting the support they need.  

Mainstream and early years schools are underfunded and ill-equipped to identify and meet the needs of children with SEND (special educational needs and disabilities). There is a lack of clarity around who is responsible for SEND provision, and little accountability for schools and local authorities that are not meeting requirements.  

The situation is particularly urgent for deafblind children, who are often described as having multi-sensory impairment (MSI). They need specially trained MSI teachers – yet over half (52%) of local authorities do not employ any MSI teachers.  

What we’re asking for

To address the broken SEND system, the next Government should:  

Invest £34 million in an MSI Teacher Fund 

Make sure that all children with MSI have access to an MSI teacher and don’t face barriers to education because of where they live.   

Hold local authorities accountable for long EHCP waiting times 

Introduce new measures to hold local authorities accountable for making children wait longer than the 20-week statutory timescale for EHCPs. 

There should be full reporting of local authorities who don’t meet this requirement.  

Bring in a long-term funding plan for SEND  

All services should be able to effectively plan for upcoming need and provide a consistent support network to children and young people with SEND.     

Simplify the process for parents navigating the system 

Make it mandatory for local authorities to have a single point of contact for parents who need to speak about their child’s SEND or social care needs.


5. Make the benefits system work for disabled people

Why do disabled people need extra support? 

People with complex disabilities are disproportionately likely to need support from the welfare system. Over half receive PIP, while almost a third get Universal Credit.  

The benefits system should be there to support people with complex disabilities to lead independent and meaningful lives, whatever their circumstances.  

Like the NHS, the welfare system should offer support to us all when we need it. But our benefits system is letting disabled people down.  

People with complex disabilities often tell us that the process of applying for benefits is long, inaccessible and emotionally distressing.  

Benefit rates don’t always cover the essentials, let alone the things it takes to make life meaningful.  Nearly half of people with complex disabilities (46%) found it very or somewhat difficult to afford costs related to their condition or impairment.

What we’re asking for

To make our benefits system fit for purpose, the next government should:  

Review benefits payments to cover the cost of essentials 

For most disabled people, disability benefits aren’t enough to cover costs.  

Sense research found that 76% of people with complex disabilities who receive benefits are worried about coping financially. 

The government must make sure disabled people can afford the essentials.  

For now, that means uprating benefits with an up-to-date figure for inflation. This should be kept under review, in case benefits need to be uprated more regularly than annually. 

Make PIP and UC applications more accessible 

Work with disabled people to simplify the PIP and UC application processes, so that everyone with complex disabilities can manage their claims independently.   

Consider a wider range of evidence when assessing benefits claims 

Attach the same weight to evidence from support organisations, social care staff and other allied professionals as is attached to medical evidence.   


6. Tackle barriers to work

Chris, a smiling man wearing a checked shirt, holding a headset in front of a computer.

Many disabled people face significant barriers to entering the workplace.  

Over half of disabled people are out of work. People with complex disabilities are even less likely to have a job, with 82% being unemployed. 

Not every disabled person can enter employment, but anyone who wants to work should be able to do so.  

Yet many disabled jobseekers just aren’t getting the specialist support they need. 

Sense polling has found that over half of jobseekers with complex disabilities don’t feel they have the support and equipment they need to find work

And the challenges don’t stop when someone enters the workplace. Sense research has found that 44% of employees with complex disabilities had been harassed or bullied at work.

What we’re asking for

To support disabled jobseekers and employees, the next government must: 

Introduce a £5 million Jobcentre Assistive Technology Fund 

Equip every Jobcentre in England, Scotland and Wales with the assistive technology many disabled people need to look for work.   

Reform Access to Work

Make the programme fully accessible to disabled people. Every person with complex disabilities should be able to make their application and manage their claims independently.  

Reform Disability Confident 

Make the requirements for Disability Confident accreditation more rigorous, and involve disabled employees in the process. 


7. Always have a senior Minister for Disabled People

Disabled people have been neglected, and left feeling like an afterthought by previous governments.  

This was never more evident than during the Covid-19 pandemic. 

Over half (53%) of disabled people felt their views were ignored during the pandemic, with 57% feeling that they didn’t receive enough support.  

This feeling of being ignored has a knock-on effect on wellbeing. Our research found that people with complex disabilities are more unhappy, more anxious and more lonely compared to the general population.

What we’re asking for

To prioritise disabled people, the next government should:  

Always have a Minister for Disabled People at a senior level 

A minister should be always be in post at Minister of State level to make sure that disabled people have the champion they deserve. This role should be based in the Cabinet Office rather than the Department for Work and Pensions.  

It is vital to have someone at senior level at the heart of government who can effectively work across all departments to factor the needs of disabled people into their work.  

Place disabled people at the heart of policy-making 

People with complex disabilities should always be at the forefront of any policy developed across all departments of government.  

Expand and prioritise the Cabinet Office’s Disability Unit 

At Sense, we have had productive engagement with the Disability Unit. Their remit should be expanded and their role in government prioritised.   

A final note 

Fernando, a man wearing sunglasses and laughing while holding the hands of another person he is communicating with.

As the country navigates the aftermath of a global pandemic and grapples with ever-increasing cost of living, the stakes of this General Election are high.   

In particular, the stakes have never been higher for people with complex disabilities, who face harsh realities and barriers all over the UK.   

By taking forward the recommendations in this manifesto, the next government has an opportunity to become the most disability-friendly government the UK has ever had.  

This manifesto is a call to action and a demand for transformative change. 

Regardless of which party forms the next government, Sense is committed to working with them to realise these objectives.  

We will not stop campaigning until the lives of people with complex disabilities are placed firmly at the heart of government priorities.  

To find out more, contact our policy, public affairs and research team: [email protected]