Disability Rights UK Newsletter

A message from our CEO: building a movement for change

2021 has been an extremely difficult year for many Disabled people.

Our lives have continued to be dominated by COVID and its devastating consequences. We are acutely conscious of the high number of deaths of Disabled people, the risk that COVID poses to those of us who are clinically vulnerable, and that many of us still have to live on insufficient income, live in inaccessible housing and receive little or inadequate support to live independent lives.

We continue to speak out strongly on these issues to Government, Parliament, businesses and the media. We have worked closely with Disabled People’s Organisations and allies to build strong alliances and to connect Disabled people to information, advice and support.

Despite the challenges we face at every turn, we are building a movement for change which is strengthening and growing.

Disabled People’s Organisations are coming together to create a louder, unified campaigning voice. Disabled individuals are challenging breaches of the Equality Act across the country and in the courts.

Disabled people are supporting each other. Disabled people in sport, business, the arts and media are becoming increasingly more visible and influential. Every day, millions of Disabled people find the courage, ingenuity and determination to overcome barriers and to contribute to society. What we do is impressive.

We still face many obstacles before society truly recognises, values and includes us. But we are relentless. We are dynamic. We are innovative. We are building a movement for change – the changes we all want to see in society, where we have full equity of access to all areas of life. Disability Rights UK is determined to play a full and front-facing role in this movement.

As we come to the end of this year, we want you to know that we will be entering the new one with determination and our ongoing commitment to upholding the rights of all Disabled people.

We wish you and your loved ones a very Happy Christmas and a more hopeful New Year.

Kamran Mallick


DR UK: Government must re-introduce Covid protections for Disabled people

Disability Rights UK is calling on the Health Secretary Sajid Javid to reintroduce protection for clinically vulnerable people, and those who are medically exempt from vaccinations, as the country moves from Covid alert level 3 to level 4.

DR UK CEO Kamran Mallick said: “We cannot stress enough how abandoned clinically vulnerable people feel and the urgent need to put effective protection and support measures in place.

“When all support was removed from 3.8 million Clinically Extremely Vulnerable people earlier this year, it was done within the context of the virus being in retreat, due to the successful roll out of the vaccination programme. CEV people were asked to manage their own risk.

“The evidence shows that this approach is no longer tenable, due to the greatly increased chance of being infected by the Omicron strain of the virus. In addition, there is a significant minority of people with chronic illness unable to minimise the impact of the virus by taking up vaccinations, due to the devastating consequences the jab has on their health.

“We are asking the Secretary of State to urgently review his decision not to introduce new measures to protect and support people who are clinically vulnerable to COVID-19.”

DR UK is asking Government to rapidly implement the following measures:

  • For the NHS to identify all clinically vulnerable people and provide them with personalised medical advice and support.
  • For Local Authorities to provide personalised support to clinically vulnerable people.
  • For arrangements to facilitate the delivery of food and medicines to be put in place for clinically vulnerable people.
  • For employment protection and sick pay to ensure that clinically vulnerable workers are able to shield and not attend the workplace.
  • For a telephone helpline to be set up for people who are clinically vulnerable, that signposts and links people to health and community support.

Disabled students to lose entitlement to Universal Credit from this week

Disability Rights UK has written to the Secretary of State Therese Coffey, urging the removal of new regulations barring Higher Education Disabled Students from Universal Credit.

The new benefit rules, which  come into force on 15 December 2021, provide that a Disabled person entitled to Personal Independence Payment (PIP) can only be eligible for Universal Credit (UC) if they are determined as having a “limited capability for work” before they start their degree course.

As there is only a short interval between finishing Secondary Education and starting a degree, effectively  Disabled young people won’t be able to undergo a work capability assessment (which can often take around nine months to secure) and will therefore be barred from claiming UC during their course of study.

In addition, young people who acquire a disability or develop a serious health condition after they begin their studies will also be excluded from UC. Read more on students and UC here.

DR UK/CII Energy Limiting Conditions survey shows huge impacts on daily living

Four in five people with Energy Limiting Conditions face barriers to education, healthcare, work, income security, getting out and socialising with friends and family and over 90% have been accused of ‘not looking Disabled’ according to new research from Chronic Illness Inclusion (CII) and Disability Rights UK (DR UK).

A survey of 1,710 people with Energy Limiting Conditions clearly shows that many of the barriers are unique to this group.

One in three of the 14 million Disabled people in the UK lives with an Energy Limiting Condition, along with a further 1.1 million people dealing with Long Covid (a condition defined by symptoms lingering for longer than four weeks).

DR UK CEO Kamran Mallick said: “Until we pay more attention to Disabled people’s lived experience of impairment, rather than their diagnostic label, those with Energy Limiting Conditions will remain invisible, marginalised and neglected as a group.

“The tragic emergence of Long Covid as an enduring legacy of the pandemic makes the case for action even more urgent. We must now act together, with stakeholders from various Energy Limiting Condition communities alongside disability rights experts, to strengthen and deliver rights and support for people with energy limiting conditions so they are not left behind.”

Read the full Energy Limiting Conditions report hereRead more on energy limiting conditions here.

Councils waste £253 million fighting parents at SEND tribunals since 2014

Research by Special Needs Jungle (SNJ) shows that Local Authorities have spent nearly a quarter of a billion pounds fighting parents at SEND tribunals since 2014.

The research has been undertaken as Her Majesty’s Courts and Tribunals Service releases its set of annual figures about the work of the Special Educational Needs and Disability First Tier Tribunal (SENDIST) – a tribunal where individual families can appeal against a range of local authority SEND decisions concerning Education, Health and Care Plans (EHCPs). Families can also go to SENDIST to appeal against particular types of disability discrimination.

SNJ estimates that Local Authorities collectively allocated around £60m of their resources towards defending SENDIST appeals in 2020-21.

SENDIST panels upheld local authority decisions in 168 of 4,825 hearings in 2020-21 – an LA success rate of 3.6%  – the worst on record.

Across the seven full academic years since the SEND reforms became law, SENDIST panel hearings have upheld just 7% of local authority decisions.

DR UK Head of Policy Fazilet Hadi said: “We totally agree with SNJ when it says that families are not ‘winning’ at tribunal. Families are having to endure a brutal, drawn out, labour intensive process to fight for what they are legally entitled to – the same right to an appropriate education that families of children without SEND are given as standard. The figures speak for themselves. The SEND process is not fit for purpose and needs an urgent overhaul, where the needs of children and families are put front and centre, and the fight that so many parents have to put up is consigned to history.”

Care home residents allowed three visitors over Christmas

The Department of Health has introduced new safety measures for care home residents which only allow three visitors and a designated carer “to balance the current Covid-19 risk and the need to keep people safe”.

Staff will have to take three lateral flow tests a week as well as a weekly PCR test under the new guidance.

The Health Secretary Sajid Javid said more booster jabs and fewer care home visitors “will help keep the most vulnerable people in our society safe from the virus this winter”.

It is unclear whether visitors will have to visit separately or be allowed to visit together. Care homes will be expected to close to visitors if a case of the Omicron COVID variant is detected.

Fully vaccinated residents visiting family and friends outside of care homes will need to take a lateral flow test on alternate days for two weeks after each visit. Unvaccinated residents will have to isolate following an outside visit. Read the government guidance here.

Dr Lisa Cameron MP leads debate on United Nations Day of Persons with Disabilities in the House of Commons

Change is needed “right at the top” to help increase representation of people with disabilities in politics, Ministers have been told by Dr Lisa Cameron MP for East Kilbride Strathaven and Lesmahagow.

The MP, who chairs the All-Party Parliamentary Group for Disability, led a debate last week marking United Nations International Day of Persons with Disabilities in the House of Commons, an annual day that seeks to promote the rights and wellbeing of persons with disabilities at every level of society. Read more on this Lisa Cameron  story here.

Bus user “ridiculed and belittled” by drivers who refuse help boarding

A woman says she was left feeling “ridiculed and belittled” by a bus driver who refused to let her young Disabled daughter board.

Tameika Pieternella often travels by bus in Abbey Wood, London, with her two year-old daughter D’Naiyah, who has brain damage.

Disability Rights UK transport champion Stephen Brookes says: “It is unacceptable that any driver makes a judgement on who should or should not be given assistance to board a bus. In this case, the child who has a severe disability is not being viewed with the same level of concern that Disabled passengers should receive.

“Arriva needs to think about its access training and ensure that all disabilities including those with hidden disabilities get fair and equitable treatment on all of its services.” Read more on this bus story here.

Disabled rail passenger left “scared and vulnerable”

A Disabled rail passenger from Leicester has been left feeling “scared and vulnerable” after recent journeys for which she had booked passenger assisted travel fell apart. DR UK’s Rail Policy Advisor Stephen Brookes said: “It is essential that rail companies and Passenger Assist staff get their respective communication acts together and work more closely.

“All too often we hear of journeys which fail Disabled people because while we book the heavily promoted passenger assistance system and try to do our best to travel safely, the differing parts of the rail industry seem unable to work together when trains are busy and disruption occurs.

“With the various consultations and aims of the new public body, Great British Railways, to provide better passenger experiences, we call on all parts of the rail sector to work with us in creating a decent service and implementing a Plan B when things go wrong. Disabled people are too frequently left high and dry at such times.” Read more about this railways story here.


DR UK offers a range of online courses, each run in two parts and facilitated by an experienced benefits trainer.

Introduction to Welfare Benefits

This course is aimed at professionals who work in advice or advocacy who need to know more about – or need a refresher on – changes to welfare benefits and social security.

Part 1: The structure of the system and the importance of health & disability benefits – Tuesday 25 January 9.45am – 12.45pm

Part 2: Universal Credit, the wider benefits system and maximising income – Wednesday 26 January 9.45am – 12.45pm

Book a place on the January Welfare Benefits course

The course costs £120 + VAT per person for DR UK organisational members. After booking you will receive a Zoom link and supporting materials by email.

Get Involved

Petition: allow carers from overseas to work in the UK

In 2019/20, the UK had around 112,000 social care vacancies. A live-in carer is classified as unskilled and is on call 24/7. It is a physically and mentally exhausting role requiring stamina, patience and kindness. They need to live in someone else’s home away from their own home, family, partner and social circle. It is not a popular job in the UK. Disabled people need to be able to recruit abroad, be self-reliant, and spend 100% of budget on actual care and avoid agency fees.

There is a petition to the UK Parliament to enable Disabled people with care needs to apply for a sponsorship licence and visas for live-in home carers from abroad. To do this, the Home Office needs to treat the Disabled person as an approved employer and recognise live-in carers as a permitted occupation for this visa.

Sign the petition here.

Help us improve our website!

With our user-centred feedback process, we intend to produce an inclusive and accessible website that caters to what our audience want.

The next stage of our research is an anonymous interactive card sorting exercise that can be done online in your own time. This exercise will allow us to collect and analyse data on how you view and understand our content and how we can improve in future. This exercise is anonymous and we will not collect any information about you.

Take part in the card sorting exercise to help us improve our website.

Parent Carer Wellbeing Study

If you care for a child with a disability or long-term illness, you can take part in the Parent Carer Wellbeing Study. Parents, step-parents, de facto parents, foster parents, kinship carers, and legal guardians are all invited to take part – as long as you live in England and your child (or at least one of the children you care for) is under 18. Find the study here.

Help with energy costs

This winter more and more households are facing the harsh reality of life in fuel poverty. Figures from the End Fuel Poverty Coalition show that over 500,000 more homes will join the millions already struggling to pay their bills.

While we fight for more government support and changes to end fuel poverty, there is help available – please don’t suffer in silence.

If you are struggling to pay your bills, contact your energy supplier. They must take into account your circumstances and help you. You might like to read this information specific for disabled customers first.

Citizens Advice have a range of information that can also help you.

It’s worth noting that if you have a Warm Home Discount with one supplier, a new supplier must honour it. If you are struggling to get your new supplier to honour the discount, you could try contacting Citizens Advice directly for help.

For older customers, Age UK also provide advice online and has a phone number you can call for help: 0800 678 1602.

For information about other government programmes visit Gov.UK.

For advice on energy efficiency visit the Energy Saving Trust website.

We’re recruiting

Disability Rights UK is looking to hire a young Disabled person to join our team. We have a vacancy for a Sales and Membership Assistant, via the Kickstart Programme. The Kickstart Programme aims to create jobs for those aged between 16-24 and in receipt of Universal Credit. The role will last for six months, be paid at national minimum or national living wage depending on age, and is for twenty five hours per week. Find out more here.

Hospital to Home

Changing Our Lives is launching a new series of books entitled Hospital to Home. The first in this series is Beth’s story. Beth is a vibrant young woman who was failed by the system and ended up in 16 different settings in seven years, many far from home. Beth spent just under three years in locked seclusion, because specialist services could not meet her needs. Beth now lives in a new setting, provided by Mersey Care NHS Foundation Trust, where she is given a great deal of control over her daily life choices and where staff understand her autism and adapt to her, rather than expecting Beth to adapt to them. To coincide with the launch of Beth’s story, Professor Rosie Harding of University of Birmingham’s Law School has written a blog about the human rights of people with learning disabilities entitled Hospitals are not homes. You can find Beth’s story here and you can read Rosie’s blog here.

Equality Advisory Support Service (EASS) newsletter 

DR UK is a member of the Equality Advisory Support Service (EASS) reference group, supporting the vital work of the Helpline in advising and assisting individuals on issues relating to equality and human rights, across England, Scotland and Wales. View the December edition of the EASS newsletter here.

Many of the calls the EASS receives are reporting issues of discrimination and human rights where the pandemic has had an impact. This includes facemask issues, workplace discrimination against people with mental health conditions and concerns about children with health conditions returning to schools.

Disability Rights UK wishes to hire a young Disabled person to join our team. We have a vacancy for a Sales and Membership Assistant, via the Kickstart Programme.

Get Ahead: Post-16 options for Disabled young people

Our annual conference for Disabled young people, careers and enterprise advisers, coaches, teachers, employers, mentors, training providers, family carers and others working with Disabled young people.
will take place on 22 February 2022.

Register for the conference here.

Get Ahead survey

We want our Get Ahead magazine and newsletter for young people to reflect what you are most interested in.

Please let us know and complete our Get Ahead survey here. The responses are anonymous, and the survey will only take a few minutes to complete.

Want to contact us directly with your thoughts? Please email getahead@disabilityrightsuk.org


Read Lord Holmes’ blog on the Disabled students allowance scheme. Read Tyler Paul’s blog about the discrimination he faced when he went nightclubbing.


Disability Advice Service Lambeth (London) is looking to recruit an interim director.

And Fairness Foundation is recruiting a part-time head of communications.

Our Helplines

Our helplines are operating as normal:

Personal Budgets Helpline

Disabled Students Helpline

Welfare Rights Helpline for Member Organisations