Tag Archives: social care

The Queen’s speech – “Consultation cannot be a substitute for action”

Today the Government has announced the laws they plan to pass and the issues they will consult on over the next two years in the Queen’s speech.

The Queen’s speech is taking place in an unusual political context with the Conservative party having failed to secure an overall majority and still in talks with the Democratic Unionist Party over a confidence and supply agreement.

Queen’s speeches normally take place once a year but with the backdrop of Brexit negotiations, there won’t be another one until 2019, so if legislation wasn’t announced today it is now unlikely to be considered over the next two years.

The Conservative manifesto made commitments to get more disabled people into work, reduce the extra costs that disabled people face and reform the broken social care system. The need to tackle disability discrimination was mentioned explicitly in the Queen’s Speech but there was little information on how manifesto commitments will be turned into action.

The future of employment

Last year the Government held a major consultation on the future of employment support for disabled people. Reform is needed to both in and out of work support to enable disabled people to find, stay and progress in work. The consultation proposed a number of important measures, including reform of the Work Capability Assessment (WCA), and Government ministers have promised to continue this work.

Yet disability employment was missing completely from the Queen’s speech. If the Government are to meet their manifesto commitment to get a million more disabled people into work then they need to take action to speed up the pace of change in closing the disability employment gap.

At the disability hustings last month Penny Mordaunt, the Minister for Disabled People, spoke again about the need for reform of the WCA, something all political parties agreed on. The manifesto also had a commitment to legislate on specialist employment support for disabled people, so it was disappointing to see neither of these things mentioned today.

There was no mention of social care for disabled people

Social care became a major issue at the election but disabled people were left out of the public debate, despite representing a third of social care users. The system desperately needs reform with over half of disabled people unable to get the support they need to live independently.

The Government has announced a consultation on the future of social care which is a welcome recognition that the system cannot continue as it is. However, there was no mention of the future of social care for disabled people. Disabled people rely on social care to get up, get dressed and go to work and their needs must be considered as part of a commitment to reform.

Disabled people spend an average of £550 a month on extra costs which affects their financial security and resilience. Disabled people face higher bills for energy and insurance so markets need reforming. Again, the Queen’s speech made a commitment to examine markets which aren’t working –  but there is action that can and should be taken now – such as requiring regulators across all essential markets to have a common definition of consumers in vulnerable circumstances.

The Prime Minister has promised to create a country that works for everyone but disabled people still face numerous barriers to everyday equality. Consultation cannot be a substitute for action. Commitments and warm words must now lead to legislation to tackle the barriers which stop disabled people participating fully in society.

That should start with a cross-Government disability strategy and action on the promises the Government has already made.

How to employ your own Personal Assistant (PA)

We’ve produced a new video featuring  five top tips for employing a Personal Assistant.

1) Decide what support you need to live the life you want

Make sure you have a think about the number of hours of support that you need. You also need to decide whether you need to recruit more than one PA to support you. It’s a good idea to have more than one person, in case one PA is off sick or on holiday.

2) Think about how you will find the right person

You can advertise in loads of different ways. You could try the internet and Facebook groups. Do remember to keep yourself safe and carry out any interviews in a public place. Some local support organisations may be able to help you with this. Just remember, it might take some time to find the right person for you.

3) It needs to be a business relationship

It might seem like a great idea to hire your friend but remember that they will be your employee. You need to make sure they have the skills and qualifications necessary to do what you need them to. Remember, it’s important to ask for references and to do criminal record checks for your PA.

4) Think about the responsibilities that come with hiring a personal assistant

This can include managing direct payments and lots of other administration.

5) Remember you might be able to get help to become an employer

In some areas, it’s possible to outsource things like payroll and get extra help to become an employer. Your local authority should be able to advise you on what local support and information is available.

If you’re considering employing your own personal assistant, read PA tips from members of our online community. 

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

How can the next government ensure disabled people have the support to live independently?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda, and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

A key part of Everyday Equality is having the right support to live the life of your own choosing. However, there are still a range of barriers that make this difficult for disabled people, from inadequate social care provision, to inaccessible physical environments and digital exclusion.

That’s why we are calling on the next government to ensure disabled people have the support to live independently.

Increasing investment in social care

Social care is an essential public service that supports disabled people to get up, get dressed and get out of the house.

Around a third of social care users in England are working-age disabled people. However, we know that more than half are not receiving the right care to support them to live independently.

Text says, Over half of disabled people using social care can't get the support they need to live independently

This means not enough disabled care users are getting the support they need to live independently, work, volunteer, and live full, meaningful lives.

In order to ensure disabled people are getting the right level of support, it is crucial that the issue of inadequate funding in social care is addressed. Whilst we have seen some recent investment, the funding gap in our social care system is estimated to rise to £2.8 billion by 2020.

That’s why we are calling on the next government to increase investment in social care so that disabled people of all ages are able to access the support they need to live independent lives.

Improving access to everyday services  

Living independently means being to have choice and control over your life, whether as a consumer, whilst travelling, or whilst socialising.

However, we know that disabled people often face barriers in accessing day-to-day markets, services and amenities.

For instance, less than a quarter of disabled people think the accessibility of pubs, restaurants, clubs and shops has improved since 2012. In the digital world, 25 per cent of disabled adults have never used the internet compared to 6 per cent of non-disabled adults, often due to a lack of digital skills or inaccessible websites. This means disabled people are more likely to miss out on the best deals and offers which are commonly found online.

We want the next government to ensure equal access to goods and services for disabled people by increasing compliance with the Equality Act, and tackling the digital divide between disabled people and non-disabled people.

Tell us what living independently means to you  

You can read more about our priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

The Budget 2017 – What does it mean for disabled people?

The Chancellor Philip Hammond has delivered the Spring Budget today. In this blog we look at the impact the budget will have on disabled people across the country. 

Ahead of today we were calling for sustainable investment in social care, a reversal of the reduction in financial support for those in the Employment and Support Allowance Work Related Activity Group (ESA WRAG) and for Government to think again on changes to Personal Independence Payments (PIP).

The Budget contained some positive news for disabled people on social care yet we were disappointed by the Government’s failure to mention, let alone reconsider, upcoming changes to disability benefits.

Social care

Following calls from disabled people, charities, MPs and local councils, the Government has provided a cash injection of £2 billion for social care over the next three years.

We hope this is good news for the 400,000 working age disabled people who rely on social care for assistance with everyday tasks such as cooking and getting dressed.

We were really disappointed when there was no further funding announced for social care in the Autumn Statement and so we are pleased that the Government has listened to calls for urgent funding.

The care system has been under immense financial strain over the past few years, with the adult social care budget reduced by £4.6 billion since 2010. £1 billion of new funding will be available this year, yet the King’s Fund has predicted the funding gap for this period will be nearly twice that at £1.9 billion.

The Government also today announced a Green Paper on social care, we will be campaigning to make sure this consultation and following action focuses on how the social care system will provide the support and outcomes important to disabled people.

Financial security

PIP is intended to help disabled people cover some of the extra costs they face as a result of their disability, on average, £550 a month. Therefore we think it is vital PIP focuses on the extra costs disabled people actually face, and not their impairment or condition. We are concerned about the Government’s move to tighten up access to PIP and have been speaking to Ministers and MPs about our concerns since the legislation was announced.

We wanted to see the Government use the Budget to reconsider this change and take the opportunity to review the PIP assessment process. Our helpline has seen a 542 per cent increase in calls relating to PIP over the last year, with many people successfully appealing their original decision.

We are disappointed the Government intends to go ahead with these changes, and will keep raising our concerns with Government.

Employment

The Government has made a welcome commitment to halve the disability employment gap and we’ve been working hard over the last year to set out the reforms needed for disabled people both in and out of work to help make this goal a reality.

However, next month new claimants in the ESA WRAG will see a £30 a week reduction in their financial support. We don’t think that this will help disabled people find work and have been campaigning against these changes since they were first announced. Disabled people are already less financially resilient than non-disabled people, with an average of £108,000 fewer savings and assets. A reduction in financial support could end up creating an additional barrier to work.

We are concerned the Government are pressing ahead with this reduction. Having missed the opportunity to halt the reduction in the Budget, we, alongside other disability charities, will continue to push for this to happen before the change takes effect.

The Prime Minister has set out her vision of a country that works for everyone, yet following this Budget there is much more that needs to be done to include specific needs of disabled people in that vision. We’ll continue campaigning on all of these issues and more to make this case.

Health and social care must work together to improve the lives of disabled people

Today the House of  Commons Public Accounts Committee, an influential cross-party group of MPs who monitor Government spending, will start taking evidence into the integration of health and social care and how well it’s going. 

At the end of the inquiry the Committee will make recommendations to Government about how to improve the social care system.

400,000 disabled people rely on social care to get up and get dressed and good social care can support disabled people to work and participate in their communities if they want to. Yet too often disabled care users report poor experiences and poor outcomes and we are campaigning to improve social care for disabled people.

Social care has been high up the political agenda recently because of the funding crisis so this inquiry comes at an important time. We think it’s vital the Committee carefully examine how the social care system is working for working age disabled adults and hope they tell the Government how to improve the care disabled people receive.

What is integration and why is it happening?

Traditionally the support people receive from the health service – such as getting up and getting out of the house or in a residential care setting –  has been funded and organised separately from social care support.

Integration aims to get health and social care working together, focusing on a person’s needs and ambitions regardless of whether what they need support with is classed as a ‘health need’, a ‘care need’ or both.

The aim is to avoid unnecessary delays in people accessing the support they need and to ensure support is joined-up when they do receive it.

What we want the Government to do

Working age disabled adults make up a third of all social care users but our research found that 55 per cent of them think social care never supports their independence. So, the Government need to do more to ensure local authorities prioritise the needs of disabled care users.

When the Government announced the Better Care Fund they set out a number of ways they were going to measure how effectively local areas were spending the money.

Currently, these measures look at issues such as whether the number of hospital admissions has reduced rather than whether an individual receiving care is being supported to live independently in the way they choose. Our research found that of the 91 Better Care Fund Plans approved in October 2014 just 14 included schemes specifically aimed at disabled adults under 65.

We want the Government to change to the way they measure the success of the Better Care Fund and other integrated care schemes so that they include outcomes relevant to working age disabled adults. This could include things such as whether social care is supporting disabled people to access employment or education or have contact with their local community.

We asked young disabled social care users aged 17 – 30 about their experiences of social care and they told us they would like more support in areas such as transport, where to live and employment. 60 per cent of respondents said they would like support with employment but do not currently get this.

We think integrated care teams supporting young disabled people should build partnerships with local specialist employment services, in order to support people who use their services to access up to date information and support that is relevant to them.

Finally, the extreme financial pressure both the NHS and social care system are under makes successful integration more difficult. In order to make integration work for working age disabled people the Government must also commit to sustainably funding social care.
That’s why we are calling on the Government use the Spring Budget to provide the social care system with the funding it so urgently needs.

Read more about our work to improve Social Care for disabled people.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.

2016 in parliament – Our impact

2016 has been a busy year in politics. We’ve seen the Government make a significant U-turn to stop proposed changes to Personal Independence Payments (PIP), an important consultation announced on the future of health, work and disability, Brexit and increasing pressure on the Government to provide the social care system with the funds it urgently needs. Scope has focused on protecting the rights of disabled people throughout 2016.

Theresa May used her first speech as Prime Minister to outline her vision for the country. She said she wanted to create a country that worked for everyone and create more opportunity for people, regardless of background. Whilst we welcomed this, much more can be done to help those ‘just about managing’, especially when recent research has uncovered that nearly half of people in poverty are disabled themselves or live in a household with someone who is disabled. We’ve raised these concerns with Government, and we need to keep hearing from you about what needs to change.

While the world was excited by the Paralympics in Rio our research found that whilst 78% of disabled people, through the Paralympic Games, have a positive impact on attitudes towards disability. Only 19% felt that Britain is a better place to be disabled now, than four years ago.

That’s why we have met with officials at Downing Street to emphasise the importance of making their social justice plans focus on improving the lives of disabled people.

Social Care

Social care has dominated the agenda in recent weeks and has been a big talking point all year. At Scope we’ve been calling for sustainable funding for social care to ensure disabled people have access to suitable care. The lack of additional funding in the Autumn Statement was disappointing and the small increase in council tax for social care won’t last and isn’t a long term solution.

In October we shared our research into the experiences of young disabled people and care ‘Leading My Life My Way’ with Government. This research uncovered that 60 per cent of young adults felt let down by their social care provision and a quarter were either only slightly or not at all involved in decisions about their care.

Many young disabled people are not being supported to do the things they want to do in their lives.

“I think it [support package] covers my blindness and my hearing impairments and the practical things I need to do, but it doesn’t give me enough time to go out and socialise.” Ricky, 26, South East

Urgently addressing the funding crisis in social care is the first step to delivering this.

Extra Costs

In March, we saw the disability community unite against proposed changes to PIP announced in the Budget. These changes would have left 640,000 people worse off financially. We warned the Government that these changes would just make disabled people’s lives harder and that our helpline heard from many disabled people concerned about the changes. We urged the Chancellor to think again and consider the impact these moves have on the lives of disabled people.

The Government u-turned and said it would not be going with this plan and committed to no further welfare cuts during this parliament.

In October we published the one-year on report of The Extra Costs Commission looking at action taken by businesses, government, regulators and consumers to drive down the £550 financial penalty of being disabled.

Uber and Marks & Spencer were two examples of companies introducing new products and practices to serve their disabled customers better. We would now like to see more businesses recognise the value of their disabled customers and will be focusing on improving service in the energy and insurance industries in the New Year.

Employment

Following our campaign in 2015, the Government committed to halve the disability employment gap and this year we have continued to call on them to introduce reforms to meet this target.

Alongside other charities this year, we have campaigned changes to Employment and Support Allowance (ESA) due to come into effect in April 2017.

The Government plans to reduce the level of financial support to disabled people in the Employment and Support Allowance Work Related Activity Group (WRAG). Disabled People in the WRAG have been found unfit for work by the independent Work Capability Assessment. This cut in support of around £30 a week to new claimants would impact nearly half a million people in the WRAG.

We believe this cut will push disabled people further away from the jobs market and make their lives harder rather than helping them overcome existing barriers to employment.

MPs and Peers from across different political parties supported our calls and argued the change must be postponed. Although the Government pushed ahead with this cut, we will continue to campaign against it.

In October the Government published a Green Paper on Work, Health and Disability which set out proposals to reform support for disabled people in and out of work.

We think it is right the Government is consulting on this and welcome some of the proposals, including working more closely with employers, challenging attitudes and halving the disability employment gap. We want to see wholesale reform of the fit for work assessment scheme, employment support to be made voluntary and significant shifts in employer attitudes towards hiring disabled people.

However, we’re concerned that the Government is considering extending requirements to look for jobs and attend employment programmes to people in the support group of ESA.

The consultation is open until February and the Government want to feedback on their proposals. Our latest blog on the Green Paper sets out how you can get involved.

This year the new Prime Minister said, ‘we will make Britain a country that works not for a privileged few, but for every one of us.’ In 2017 we will be looking to ensure that this includes the UK’s 12.9 million disabled people.

Next year we will continue to campaign for the Government to introduce reforms that support disabled people to find and stay in work, the protection of disability benefits and asocial care system supports disabled people to live independently.

 Read more of our policy blogs.

What we would like to see in the Autumn Statement 2016

This Wednesday Phillip Hammond will give his first Autumn Statement as Chancellor, the Government’s first major financial statement since the vote to leave the European Union.

At Scope we’ve been campaigning and raising awareness of the important issues that disabled people face ahead of Wednesday’s Autumn Statement announcement.

Autumn Statement

There has been lots of speculation about what he will include. He has decided not to go ahead with previous Chancellor George Osborne’s formal target to create a budget surplus by 2020 which will give him some flexibility on how much he spends.

Theresa May’s first speech as Prime Minister set out her commitment to creating a country that ‘works for everyone’ and ‘allowing people to go as far as their talents will take them.’ A recent common theme has been a focus on those ‘just about managing.’ But what does this mean for disabled people and what are Scope been calling for?

Last week we saw passionate speeches from all parties about the need to rethink the implementation of forthcoming reductions in financial support to Employment and Support Allowance (ESA), at the beginning of the month the Government launched its consultation to tackle the disability employment gap; and, last month we published research highlighting the crisis in social care for young disabled people.

Taken together, there are many disabled people who are ‘just about managing’.

Our Extra Costs work has highlighted life costs more if you’re disabled. £550 a month more. From the need to purchase appliances and equipment, through to spending more on energy. And yet payments aimed at alleviating these – such as Personal Independence Payments (PIP) – often fall short of enabling disabled people to meet extra costs, leaving many turning to credit cards and payday loans to help with everyday living.

Ahead of the Autumn Statement we think there are three key areas that need addressing.

Social Care

Social care has been at the top of the news agenda in the run up to the Autumn Statement with the Care Quality Commission, Local Government Association, Care and Support Alliance and even the Conservative Chair of the Health Select Committee saying the social care system is in desperate need of investment. Working age disabled adults represent nearly a third of social users.

We have long been calling for sustainable funding in social care. Reductions in funding to local government over the past six years mean the social care system is starting to crumble under extreme financial pressure. We have heard from disabled people who have had to sleep fully-clothed, in their wheelchairs. Scope research in 2015 found that 55 per cent of disabled people think that social care never supports their independence. And just last month we found young disabled adults’ futures are comprised by inadequate care and support.

Social care plays a vital role in allowing many disabled people to live independently, work and be part of their communities. That’s why urgent funding and a long-term funding settlement are needed.

Extra Costs

On average, disabled people spend £550 a month on disability related costs and when we asked disabled people about their top priorities for the Autumn Statement, 70% said protecting disability benefits. We want to see PIP continue to be protected from any form of taxation or means-testing and the value of PIP protected.

The Government is expected to announce significant infrastructure investment and there will be potentially be announcements on digital infrastructure and energy.

We hope energy companies are required to think more about how they can support these consumers with their energy costs more effectively. With 25 per cent of disabled adults having never used the internet compared to 6 per cent of non-disabled adults, any new digital skills funding should include specific funding for disabled people.

Employment

The Government made a welcome commitment in their manifesto to halve the disability employment gap and a plan on how to achieve this in the Improving Lives consultation.

The Autumn Statement provides an opportunity for the Government to take steps to support disabled people to find, and stay in work.

Last week, MPs debated the changes to Employment Support Allowance Work Related Activity Group due to begin in April 2017. MPs from across political parties have been urging the Government to think again about the changes. Half a million disabled people rely on ESA and we know they are already struggling to make ends meet. Over the last year we have been campaigning against this decision as we believe reducing disabled people’s financial support by £30 per week will not help the Government meet their commitment to halve the disability employment gap.

Read more about the Green Paper and how to get involved with the consultation.

Independent living – “I could be sat in my room for nearly 24 hours at a time”

Ricky is currently studying for a Masters degree in the Theory and Practice of Human Rights. In this blog he describes his experience of living independently while at university.

Before going to university, I knew very little about the operation of the social care system. I had attended residential schools for blind and visually impaired people since the age of 8, where specially trained staff were always on hand to assist if and when required. The prospect of not having someone upon whom I could always call was initially very daunting, but my desire to attend university outweighed such anxieties.

When I was planning to go to university, I opted to use a care agency for my support, as I felt this was a safer option than direct payments. After all, I was moving to a new town and didn’t know anyone in the area.

The idea of going to university for the first time without anyone to turn to for advice, let alone taking on the additional hassle of recruiting reliable support workers was very daunting.  Agency staff, in theory at least, would be vetted and experienced and it would be the agency’s responsibility to ensure that I always had the support I needed.

Theory and reality can be very different

Sadly, as is so often the case in life, theory and reality can be very different.  On several occasions, new staff would turn up at my door without me being given prior warning, something which is especially confusing for someone who can’t see.

The agency would often send staff at the incorrect time, inform them that my shifts were shorter than was actually the case, and would even tell me regularly that they weren’t sure if they had any staff members who could visit me on a given day, which made me feel more anxious than words can describe, given that my family lived in Ipswich, 125 miles away.

On one occasion, I was told the agency had no staff who could come and visit me that day.  When I asked the agency what they expected me to do for food, I was simply told that I would have to make the best of things and that I would be fed the following day!

Half-way through my second year at university, I decided to take the plunge and switch to direct payments. The direct payments system is not plain sailing by any means. It is a constant juggling act trying to ensure that all staff have sufficient hours to keep them happy in the job and there is no guarantee that suitable applicants will respond to adverts.

Direct payments

Nevertheless, direct payments have given me much more flexibility and I have been able to recruit many staff with whom I have a lot in common, so these people are not only my carers but also great friends. A direct payment support service supports me with logistical issues, such as ensuring correct taxation, National Insurance contributions, and pay slips for my staff.

Until recently, I had no more than 22 hours of support while at university and around half this while living at home. This support met my basic needs, but meant that on days when I had no classes at university I could be sat in my room for nearly 24 hours at a time. I therefore had very little social interaction during term-time. This, combined with the problems I had with my previous support arrangements, took its toll upon my mental health.

However, I have recently secured an increase in my hours to 41.5 per week.  As a result of this, I am confident that the forthcoming academic year will allow me to be even more independent and have an even more fulfilling university experience.

Find out more about young disabled people’s experiences of living independently. Read our new research report, Leading my life my way.