UN Convention on the Rights of Disabled People

Press Release: Liberty in Focus on 7th Independent Living Day

This year’s European Independent Living Day is a day like no other. With much of the world under lockdown, most of us are celebrating the day indoors, keeping safe, with only the most necessary contact with those on the outside. Many are struggling with the lack of assistance, lack of food, isolation, mental health issues, fear of being denied medical treatment. Many have been quarantined in institutions, with zero contact to the outside world.

When the European Network on Independent Living chose “liberty” as the theme for the 7th Independent Living day, we could not begin to imagine that so many would have their liberty restricted or denied. Yet, while we cannot organise protests, meetings, conferences or meet ups, we can use this situation to raise awareness about the importance of Independent Living.

For decades, the Independent Living movement has been calling for the closure of institutions. Despite evidence of abuse and human rights violations in institutional settings, there are still many that claim they are safer than living in the community. Now that thousands have died and are dying in institutions and older people’s homes, is this not enough proof that these places are not suitable for living?

For many disabled people, restrictions on movement and social contact are a part of everyday life, due to the lack of support or lack of accessibility. Now that everyone has felt the effect of not being able to leave their homes, go to school or to work, to meet up with friends, is this not enough to understand the importance of being part of society for all?

Tomorrow is a day to celebrate freedom, liberty and Independent Living. Let us learn lessons from the COVID-19 pandemic and make our societies safer and accessible to all.

ENIL calls on the Governments and the EU institutions to make a commitment to protecting the right to live independently and being included in the community of all disabled people, in line with Article 19 of the UN Convention on the Rights of Persons with Disabilities. Specifically, they should:

  • Listen to the voices of disabled people, especially those that are most marginalised, such as those living in institutions, and prioritise their rights over economic and other interests.
  • Make a commitment to closing down all institutions and ensure all current and future investments are directed to strengthening community-based support and developing inclusive mainstream services.
  • Protect the rights of disabled people, of all ages, in the post-COVID 19 planning, and take into consideration lessons learnt from the current situation for the future, including the inherent danger of institutional care settings.

Coronavirus COVID-19  Disabled People’s Frequently Asked Questions

I thought it would be useful for my Wales-based disabled readers, to read the following FAQs concerning the Coronavirus outbreak. We need all the help and support we can get, so it is important to be armed with information such as this, which was kindly put together by Disability Wales. 

Stay safe everyone.

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Do we have any answers from Welsh government on protections for disabled people who access social care?   

Visits from care or healthcare workers, who would normally come and help with your daily needs or social care, will be able to carry on as normal. But carers and care workers must stay away if they have any of the symptoms of coronavirus – a high temperature (above 37.8 °C) and/or new and continuous cough. 

You may find this guidance on home care provision useful: COVID-19: guidance on home care provision on GOV.UK 

Will the Coronavirus Bill have any impact on social care in Wales? 

Disability Wales has serious concerns about the implications of the Coronavirus Bill on human rights, especially the rights of specific groups, including disabled people. 

We welcome the UK Government’s amendment to ensure the Corona Virus Bill is to be renewed every six months, given the sweeping nature of the powers. Nevertheless, we remain concerned that the Bill gives Ministers the powers to suspend the key provisions in the Social Services and Well-being (Wales) Act 2014 unless services are needed to protect an adult from abuse or neglect or a risk of abuse or neglect. Unlike the suspension of the Care Act (2014) duties in England, there is no express requirement to avoid breaches of the European Convention on Human Rights included. 

We call on the Assembly to take action to protect the lives of many thousands of disabled people by ensuring that no services are withdrawn without undertaking an assessment to verify whether there would be a breach of human rights.  See link to joint statement issued http://www.disabilitywales.org/coronavirus-bill-statement/   

Will carers/disabled people be provided with Personal Protective Equipment (PPE) i.e. gloves, aprons, masks? 

Welsh Government are taking steps to enhance the arrangements in Wales for protecting our front-line health and social care staff who are caring for suspected or confirmed COVID-19 patients. 

As social care has an essential role along with health care in response to COVID-19, PPE will also be released for use by social care providers.   

You can contact your local Direct Payment Support provider who will be able to signpost you to where you can get hold of PPE.  

How are ‘vulnerable’ people in Wales being identified or can they register themselves? 

Identification of those classed as high risk will be done through GP/hospital medical records. 

If you have been identified as being at high risk, you will receive a letter from the Welsh Government setting out the advice and sources of help and support in your local community. If you are employed, this is also proof that you will not be able to go to work while you are shielding and can be shared with your employer. If you are able to, you can work from home, if your job allows it. You will not need to get a fit note from your GP. 

If you need help from the welfare system visit Universal Credit on GOV.UK website. 

If you believe you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter, you should discuss your concerns with your GP or hospital clinician.  

Will testing be made available to carers / Personal Assistants and those being supported (disabled people)? 

Welsh Government are aiming to roll out testing beyond the NHS to social care.  They are increasing the capacity to do this.  It won’t happen immediately but it will be introduced in the coming weeks, with significant extra testing being introduced for other key workers including social care providers. 

Those providing social care will be tested if they present Corona like symptoms and they can then be returned to the workplace if the test provides the right result. 

We are yet to hear whether testing will be introduced for those being supported. 

I am unable to get a food delivery slot online at any supermarket what can I do? 

There are many local shops (butchers, greengrocers etc) offering a food delivery service or pick up.  You could try contacting local shops in your area to see is this is available.  

If you are online and use social media you can post to local community pages on Facebook for example, to find out what food delivery services are being provided in your area.   

Another option is to contact your local Community Voluntary Service (CVC) they may know of volunteers or services who could help you.  Here is a link to CVCs across Wales: https://www.gvs.wales/about-us/wcva-county-voluntary-councils-cvcs-and-volunteer-centres-vcs 

Or contact our office on 029 20887325 email: info@disabilitywales.org and we will do our best to look into the options for you, if you are unable to. 

My Carers / Personal Assistants have all called in sick due to Corona like symptoms, what shall I do? 

If you receive support through an agency then contact them straight away to inform them of the situation.  They will be able to advise you. 

If you do not receive support through an agency then contact your local social services to seek advice immediately.   

You can find a link to your local council’s website here: https://www.wlga.wales/welsh-local-authority-links 

I need to order and collect my repeat prescription/s.  What do I do as I’m classed as ‘vulnerable’ and I need to self-isolate? 

Many GP surgeries are restricting access to the surgery itself at this time.  You may have to order your repeat prescriptions over the telephone.  Please telephone your surgery to check what their procedure is during this Coronavirus pandemic.   

Ask family, friends or neighbours for assistance during this time, if this is possible.  In many cases prescriptions are being sent to the nearest pharmacy to people and then deliveries are being made to people’s homes where necessary.  Explain that you are self-isolating and will need someone to deliver your medication to you. 

Make sure you order your repeats in plenty of time.  It may take a little longer than usual to obtain your medications due to the high demand.  However, there is no need to stock on your medication as this can lead to medication shortages.   

Contact your GP and pharmacy to check procedures during 26is time as processes may vary across Wales.     

Useful sources for information: 

Public Health Wales: guidance on social distancing for everyone in Wales including disabled people: https://phw.nhs.wales/topics/latest-information-on-novel-coronavirus-covid-19/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults/#  

Social Care Wales: https://socialcare.wales/news-stories/the-latest-information-on-coronavirus-covid-19 

Dewis Wales: Find local and national organisations that can help you https://www.dewis.wales/ 

All information has been taken from official sources and understood to be correct at time of publishing. 

The Human Right To Dignity

The following article dates from Friday, 15 April 2011 and is taken from The Broken Of Britain blog. This was a blog written by the late Dr Rhydian Fon James and his words are as relevant today as they were nine years ago.

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To read a biography about Rhydian, please click the following link. I would recommend reading all about this prolific inspirational who achieved so much before tragically passing in January 2016 at the age of just 31. Like me, Rhydian lived with Friedreich’s Ataxia. 

It is encouraging that the social care landscape has changed for the better in Wales since this article was published, as disabled people are now protected by the Social Services and Wellbeing (Wales) Act of 2014. In addition, the Welsh Government have made a commitment to the Codes of Practice to Article 19 of the UN Convention on the Rights of Disabled People.

I have now received my ‘independent reassessment’ from ICS and WCBC and am working behind the scenes to sort out an appropriate care package. I do not want to say too much at this stage as I need to concentrate and stay focused on the negotiations ahead.

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The Human Right To Dignity

This week was meant to be a quiet one, with Parliament in recess; no pressing issues on the news agenda; no MPs to brief. Meant to be. It hasn’t quite worked out this way, and we’ve all been busy preparing the continued campaign. This has meant that I haven’t had a chance to write about an interesting court case that’s been on my mind for the last couple of weeks.

Last week the Supreme Court heard an appeal case with huge implications for disabled people who receive packages of support. The court heard the appeal of Elaine McDonald, whose care package was cut by Kensington and Chelsea council even though it had assessed her as needing that support. McDonald became disabled following a stroke in 1999 and later broke a hip in a night-time fall. She had been provided with a weekly package of 22.5 hours of daytime support and another 10 hours of care seven nights a week.

A needs assessment by the council found night-time care was essential to provide supervision to prevent her falling while using the commode at night, due to a bladder condition. But in 2008 the council said it planned to cut her care package, and said she could be given incontinence pads instead of an overnight care worker, even though she is not incontinent. In November, the Court of Appeal ruled that the council had not breached care laws, McDonald’s human rights or the Disability Discrimination Act (DDA) by cutting her support.

The Supreme Court confirmed three weeks ago that it had granted her leave to appeal. McDonald’s case is being funded by the Equality and Human Rights Commission, which said in November that it feared other councils would use the judgment to “reduce community care and services for disabled people”. The Supreme Court’s decision will not be handed down for a few weeks yet, but it will be massively important for anyone who gets a care package from their local council.

This is because the Court of Appeal had found that a council could simply review a service-user’s care needs and then reduce their support, without needing to conduct a new assessment. The precedent set by this case would affect all service users. At the moment, if the council want to cut a person’s care package, they must show that their needs have changed and that they are thus entitled to fewer hours.

As service users will know, councils have been anxious to cut costs in recent years. This has led to a great deal of pressure to cut care packages, and the near-impossibility of new care packages being offered, but the need to re-assess has slowed the austerity zeal. This is because, regardless of whether they wish to cut, councils must show that the service user’s needs have lessened prior to cutting, and a council cannot be considered to have conducted a lawful assessment simply by reviewing a disabled person’s care package.

If the Supreme Court were to uphold the Court of Appeal’s decision, it would give councils free reign over decisions to cut care packages. It would also mean that it would be more difficult to argue that the refusal to provide care was a breach of her human rights to dignity and to a private and family life.

You might think that forcing a disabled person to, effectively, wet themselves at night when they are not incontinent is humiliating and degrading. But when councils are hunting for possible cuts, it may not be illegal for councils to cut care packages and force just that outcome.

WRITTEN STATEMENT BY THE WELSH GOVERNMENT #SaveWILG

TITLE: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments

DATE: 13 February 2020

BY: Julie Morgan AM, Deputy Minister for Health and Social Services

It is paramount that people’s ability to live independently is not compromised by changes to the way their care and support is arranged and provided. Last July, and following close working with the #SaveTheWILG campaign, I updated Members on the new arrangements I had introduced to provide independent care assessments for people who used to receive payments from the Welsh Independent Living Grant (WILG). These new arrangements were to aid any former WILG recipient who was unhappy with the outcome of their local authority care assessment. This statement is an update on those independent assessments.

Following my last update, ICS Assessment Services were appointed, through a competitive process, to organise and undertake the independent assessments for those who requested these, and 46 former recipients of payments from the WILG took up this opportunity. ICS has now undertaken all of these assessments.

All of the independent assessments completed have now been quality assured by ICS and passed to the respective local authority to consider. This was prior to a discussion between a social worker from ICS and a social worker from the respective local authority about the outcome of the independent assessment, and any effect its findings may have on the person’s current care package. Subsequent to this, a joint meeting is held with the person to discuss the outcome of that discussion, talk through the implications for their care package and agree the future care and support they will receive as a result.

In around half of the independent assessments completed, the discussion between the ICS and local authority social workers has now taken place, with the remaining discussions taking place over the next few weeks. Following these, meetings with care recipients have begun, with outcomes for those people being agreed and starting to be put in place. While it is too soon to comment on the overall outcomes from these independent assessments, some important issues are coming to light.

In a number of cases ICS has found that individuals are currently receiving larger care packages than expected, potentially because those individuals are at the transition point for NHS Continuing Healthcare (CHC). This interface between CHC and direct payments, and the challenges this can cause for care recipients, are issues that have also been highlighted to me at the National Social Care Partnership Board

Having reflected on this, I have instructed my officials to undertake a review of the direct payments and CHC interface. This is with a view to determining whether there are other mechanisms, for example independent users’ trusts, that could be used to ensure people that need more support from the NHS are not put in a position of losing the team of personal assistants they have funded through direct payments and built up over a number of years. If a better more equitable way can be found, this would remove the apparent fear that some people feel about the prospect of CHC.

It is a complex area and I will not compromise the principle of an NHS that is in the public sector rather than in the hands of private individuals, but I want us to see if there is a better way and to do that work quickly.

The United Nations Convention on the Rights of Persons with Disabilities, Article 19, is clear that States must ensure disabled people have access to a range of home / residential and other community support services, including the personal assistance necessary to support living independently and inclusively within their community. The key principle regarding this human right is the ability to choose how you are supported in your everyday personal care.

As the outcomes across the span of independent assessments are confirmed, I would remind Members that the cost of the independent care assessments, and any additional social care that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are fair and consistent with supporting people’s agreed wellbeing outcomes.

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ENIL Busts Myths on EU Funds and Independent Living

I am taking precious time out of my campaigning for the General Election to share the following email from the European Network on Independent Living (ENIL), concerning independent living with my readers on International Human Rights Day. 

I do not fail to see the heartbreaking irony of posting the following email that concentrates on EU funding for independent living at a time when certain sections of the UK seem obsessed with Brexit, never mind the consequences. 

I won’t go into the rights and wrongs of Brexit at this point, but I just wanted to share the following email as a show of solidarity to my European brothers and sisters. 

 #VoteLabour2019 #JC4PM2019 

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In Brussels, 10 December 2019 – To mark the International Human Rights Day, the European Network on Independent Living – ENIL is launching its second Myth Buster, this time on “EU Funds and Independent Living”. Illustrated by our European Solidarity Corps volunteer, Hatiye Garip, and published as part of the “EU Funds for Our Rights” Campaign, the booklet challenges the most common misconceptions about how EU taxpayers’ money is used with regard to disabled people. It is aimed at all those advocating for EU Funds to be used to support disabled people’s right to live independently and to be included in the community.

Despite ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD), Member States and the European Commission continue investing in institutions for disabled children and adults. “Those people have nowhere to go and no one to take care of them”, “Small group homes are just a transitional measure”, “Not all EU funded projects are 100% perfect” are among the excuses that Independent Living advocates hear. The result is continuing human rights violations against disabled people, funded by the European Union – as witnessed by Al Jazeera in last week’s hard hitting documentary.

EU Funds have great potential to improve the quality of life of disabled people when used well. They can contribute to the closure of institutions and improve access to community-based services, including personal assistance, early intervention services, housing, education, employment, health care and transport. On the other hand, when misused, EU funds can further delay the process of deinstitutionalisation and lead to segregated facilities being in use for years to come.

It is time for the Member States and the European Commission to take their human rights obligations seriously. We hope that this Myth Buster will serve as a useful tool to all those human rights defenders working to make Governments and the European Union accountable for their actions.

Download the Myth Buster here

Disability News Service: Welsh government ignores social care funding crisis… in independent living action plan #SaveWILG

The following is an article written by John Pring on his excellent Disability News Service website. This can be accessed by clicking here. 

I have been put in a difficult position following the publication of the Welsh Government’s new framework on independent living – Action On Disability – The Right to Independent Living.

I have been extremely critical of this new legislation, but I want to make it very clear that this is a separate issue to my WILG campaign. I will be forever grateful to the Welsh Government for listening to campaigners and acting decisively. Our new First Minister and the Deputy Minister for Health and Social Services deserve particular praise for their hard work and determination to protect a vulnerable section of society.

However, I hope both Mark Drakeford and Julie Morgan can appreciate why I  have to speak out against the new framework due to the lack of consideration of social care. I am a proud member of the Labour Party and fully support the vast majority of the party’s policies, but I reserve the right to be critical of specific programmes and will campaign to improve them.

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The Welsh government has completely ignored the social care funding crisis in a new action plan aimed at ensuring disabled people’s right to independent living.

A public consultation process with disabled people and disability organisations led to “multiple calls” for increased social care funding.

But the final version of the Labour government’s framework and action plan on the right to independent living – which includes 55 actions – says nothing about the funding crisis or the need for more spending on adult social care.

This contrasts with its 2013 framework, which it replaces and which included lengthy sections on access to social care, direct payments and personalised support.

In discussing the engagement process, which took place in 2017, with further engagement late last year on a draft version of the framework, the document says: “We heard that cuts to social care provision have led to lower allocations for Direct Payments which means disabled adults and young people are becoming increasingly isolated and impact to their well-being compromised.”

It also admits that there were “multiple calls for increased funding for health and social care” during that process.

But despite those calls, not one of the 55 actions in the plan mentions social care funding, or the need to address the cuts.

Instead, the action plan details wider measures around independent living, including: barriers to employment; recruitment of disabled apprentices; a review of funding for housing adaptations; collecting evidence on disability poverty; and improving access to health services.

It also includes a planned review of the disabled students’ allowance system; a pledge to improve understanding of the social model of disability across the Welsh government; and action on access to public transport.

There is also a pledge to introduce a scheme in Wales to provide financial support for the extra costs of disabled people seeking election to local councils, to match schemes in Scotland and England.

Nathan Lee Davies, a leading disabled campaigner who has helped secure concessions from the Welsh government on the impact of the closure of the Independent Living Fund (ILF), said the omission was “bemusing” and appeared to be a “major step backwards”.

A spokesperson for the Welsh government refused to comment on the failure to mention cuts to social care funding in the action plan.

But Jane Hutt, the Welsh government’s deputy minister and chief whip, who has responsibility for equality issues, said in announcing the new framework that “supporting people to live their lives in the way they choose is the right thing to do”.

She said the framework sets out how the government was fulfilling its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

But the failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government could be in breach of the convention’s article 19.

Article 19 says that governments signed up to the convention should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

Despite this omission, the framework pledges to “work for continuous improvement in how Wales fulfils its obligations with regard to [UNCRPD] and the Rights of the Child”.

There is also no mention in the document of ILF, and the Welsh government’s decision to close its interim Welsh Independent Living Grant (WILG) scheme, which it had been running as a stopgap with UK government transition funding since ILF closed in June 2015.

WILG closed on 31 March 2018, when the £27 million a year funding provided by the UK government to maintain support to former ILF recipients transferred to local authorities in Wales.

Because of the WILG closure, Welsh local authorities are now solely responsible for meeting the support needs of all former ILF-recipients.

More than 1,200 former ILF recipients will now have their needs met through council funding, while 50 of them have requested an independent assessment of their new support package, a process being funded by the Welsh government following a campaign led by Davies over concerns about post-WILG support.

A Welsh government spokesperson said: “The Welsh Independent Living Grant was introduced as an interim measure to support people who received payments from the UK government’s Independent Living Fund which closed in 2015.

“Our new framework focuses on the future of independent living in Wales, and what Welsh government can do to support disabled people going forward.”

Davies said: “On the face of it the new framework that has been introduced by the Welsh government, following a lengthy consultation process, is as bemusing as it was when [the draft version] was originally launched last year.

“It seems as if I wasted my breath at two consultation days as many of the failings of the framework that I highlighted have failed to be addressed in a [document] that does not seem to address the needs of disabled people with high support needs.

“Social care does not seem to be addressed at all. This is an absolutely bizarre situation when discussing a framework supposedly designed to promote independent living for disabled people.

“Not one of the 55 actions in the action plan mentioned social care funding, which is extremely worrying.”

He added: “After achieving success with the #SaveWILG Campaign – where former ILF recipients have been offered the opportunity of an independent assessment if they disagreed with the decision of the local authority, all funded by the Welsh government – it was hoped that this would signal a change in attitude going forward.

“The dynamic brand of 21st century socialism introduced by first minister Mark Drakeford has delivered positive change that deserves to be recognised.”

But he said the new framework and action plan “seems like a major step backwards”.

He added: “It just seems that the socialist values that the Welsh government demonstrated with their reaction to the WILG campaign have not been utilised in the new framework.

“It does not sit well with me to criticise this new [document], but the fact that it seems to blatantly flaunt the UNCRPD article 19 is a major cause for concern.

“It would be very easy for me to ignore this as WILG recipients have now been protected, but as a disabled activist I remain vigilant to the needs of my disabled brothers and sisters across Wales.

“All disabled people with high support needs should be able to access adequate social care and I will not rest until justice prevails for those in need.”

Rhian Davies, chief executive of Disability Wales (DW), who led the national steering group on the framework, welcomed its publication, particularly “the renewed commitment to implementation of the [UNCRPD] and consideration of options to incorporate this and other UN treaties in Welsh law together with a stronger focus on the social model of disability and proposals to tackle the disability employment gap and support disabled people to take up positions in public life.”

But she added: “Some aspects of the action plan are stronger and more developed than others, often in those areas where disabled people have been closely involved in informing and influencing policy.

“With regard to social care, there appear to be relatively few initiatives cited in the action plan compared with other policy areas.

“Key issues raised during the consultation are omitted, including low take-up of direct payments, provision of advocacy services, WILG developments and the impact of austerity on social care as a whole.

“We understand that the action plan is a work in progress so DW will continue to press for these issues to be addressed, including through Welsh government’s Disability Equality Forum which plays a vital role in monitoring implementation of the framework.”

Disability News Service: Labour ‘on collision course with UN and EHRC over independent living’

The following article has been written by John Pring and appears on his excellent Disability News Service website which can be found by clicking on this link.

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The Labour party is on a “collision course” with the equality and human rights watchdog and the United Nations because of its failure to accept the need for a legal right to independent living, according to a national network of disabled people’s organisations (DPOs).

The Reclaiming Our Futures Alliance (ROFA) has called on Labour to join the TUC in backing its proposals for a new National Independent Living Support Service (NILSS) that would give disabled people crucial new rights to free support.

A meeting of ROFA members and supporters from across England agreed on Friday on their priorities for winning support for NILSS.

Among those priorities was to push Labour to include the plans in its next general election manifesto.

There was also “contempt” at the meeting for the Conservative-led government’s continuing failure to publish its own much-delayed plans for solving the adult social care funding crisis.

ROFA’s demands for a NILSS were first set out in January, in the Independent Living for the Future document, and backing for the plan appears to be growing.

On Friday, the Trades Union Congress passed a motion – proposed by Sean McGovern, co-chair of TUC’s disabled workers’ committee – that calls on the next Labour government to establish a NILSS.

The motion had been passed by TUC’s annual Disabled Workers’ Conference in May.

Such a service, running alongside the NHS, would provide a universal right to independent living, with support provided free at the point of need, funded by general taxation, managed by central government, and delivered locally in co-production with disabled people.

Similar motions have been passed by local Labour branches, with the hope that the proposals will be debated on the floor of the party’s annual conference in Brighton from 21 September.

And the day after Friday’s meeting, ROFA member Andrew Day passed Jeremy Corbyn a letter, when the Labour leader visited him during a visit to Norwich, in which he asked him to meet ROFA to discuss the NILSS proposals.

Mark Harrison, a ROFA member who helped draw up the strategy and took part in Friday’s meeting, said the disabled people’s movement was united behind NILSS.

He said the idea could be “transformational” if it was adopted by Labour as part of its general election manifesto.

But he said he did not believe that the party’s shadow social care minister, Barbara Keeley, had engaged with representative DPOs on social care and the right to independent living, as the party should have been doing because of principles laid out in article four of the UN Convention on the Rights of Persons with Disabilities.

Labour disputed this and insisted that Keeley had not refused to meet with RoFA, and “regularly consults with a range of stakeholders, including people with lived experience, on social care policy development”.

Harrison said Labour’s current policies on social care were “pathetic” and “neither transformational nor socialist”.

He said Labour was currently on a “collision course” with the UN committee on the rights of persons with disabilities, which has called for the UK to introduce a legal right to independent living, and the Equality and Human Rights Commission, which has also backed such a move.

Although Labour’s 2017 general election manifesto (PDF) promised to sign the UN convention into UK law, the party has since shied away from promising a legal right to independent living, which is offered by article 19 of the treaty.

Harrison said ROFA would hold the Labour party’s “feet to the fire” over independent living.

He said: “This could be a flagship commitment of a new Labour government coming to power.”

He also said there was “complete contempt” for the government at Friday’s meeting over its failure to publish its plans for social care, and for its own failure to engage with representative organisations of disabled people.

He said “momentum was building” behind the NILSS idea, and he added: “That was the good thing about Friday: the momentum is building up and people are really on it, determined that we are not going to let this one go.

“The Labour party should not be waiting. It should be engaging with us now.”

A Labour party spokesperson said: “The proposals fall across a range of government policy areas, from work and pensions and health and social care to justice.

“They will be considered carefully as part of Labour’s policy development process.”

She added: “Labour is committed to addressing the crisis in social care.

“Our plans for a National Care Service will provide dignity in older age, and independence and support for people with disabilities.

“Our plans will ensure that social care receives the funding it needs, at a time when Tory austerity has created the national crisis in social care.”

The Department of Health and Social Care had failed to comment by noon today (Thursday).