UK is Breaching Human Rights of Disabled, UN told

Source: Stephen Naysmith – Herald Scotland

A SCOTTISH campaigner will this morning (2nd April 2012) tell the Human Rights Council of the UN that the UK Government is in breach of its human rights obligations to disabled people.

In Geneva today, Dr Pauline Nolan, Policy Officer for Inclusion Scotland, will submit evidence to a preliminary hearing ahead of a planned review of the human rights record of 14 states, including the UK.

On behalf of the Campaign for A Fair Society – a coalition of more than 70 Scottish charities – Dr Nolan will warn the cumulative impact of welfare reform and cuts to benefits affecting disabled people will mean their ability to live a full life is impaired. In particular, she will argue that welfare changes undermine their right to be included in the community.


Irish MEP’s Discuss European Union Austerity Measures

On the 9th February 2012 ENIL and the parliamentary group GUE/NGL held a hearing in the European Parliament entitled ‘Defend the right of Independent Living – How the EU’s austerity policy is undermining the lives of people with disabilities’.

Before the hearing I met up with two Irish Members of the European Parliament, Mairead McGuinness and Paul Murphy. We discussed the impact of the austerity measures on the lives people with disabilities and the future implications of these measures.

Paul Murphy, MEP was moderator of the second panel which focused on ‘The threat of cuts to the rights of persons with disabilities at the European Level’. Paul Murphy is a member of the Socialist Party in Ireland and is part of the GUE/NGL parliamentary group. This hearing was his first introduction into the area of disability. Paul Murphy said that for him “this is the start of the process of becoming more active in the whole area of disability”.  Mairead McGuinness, MEP is a member of the political party Fine Gael in Ireland and is part of the European Peoples Party (EPP) parliamentary group. She has a long standing interest in disability issues. She supports agencies that work on the ground in EU countries to achieve deinstitutionalisation by raising the issue in the European Parliament.

Peter Lambreghts, ENIL and Onafhankelijk Leven and Paul Murphy,MEP

One of the first issues that I discussed with Paul Murphy was how Europe’s austerity measures could impact on one of the main objectives of the Disability Action Plan (DAP), which is to ‘make equal opportunities for disabled people a reality’. Paul Murphy described how the gap between people’s aspirations and reality is growing as a result of the current financial crisis.  “Unfortunately, the impact of the actions of the Commission and the local government is quite vast and with the crisis the gap has grown even bigger.” He described the situation in Ireland and how those that are most affected by the crisis are moving further away from their hopes.


Edward Scissorhands … the cuts in Italy

He couldn’t have done worse than this. The BTP-Bund spread going up and down, the European Central Bank, a crisis in welfare: explain it how you want but at the end of the day there is a scapegoat that has always been used and that’s the weak. In the middle of this, disabled people are to be kept even further away from the rest of society but nevertheless under firm control. We are seen as a problem that has to be increasingly managed as the population ages. This year the situation is even worse, with cuts pushed through based on the invented notion of “fake invalids”.  In effect what we are being told is, sorry, there is a crisis and there is no money left for you. So many human rights written so very nicely but not applied at all. As far as the European Union is concerned the welfare state is not a priority and isn’t on the agenda.

Then Edward moves his scissors. In Italy this has been called the “Save Italy” decree. In effect it is virtually wiping out the social care system. In the South of Italy there was little social care support before the decree, and even less remains now. In the north of Italy there was little and now there will be nothing. For example in Piedmont, by 2004, we had managed to break down the barrier that had traditionally stopped disabled people from accessing a PA allowance and we secured the introduction of a regional decree with a fund of 1 million Euros for 50 disabled people with high levels of support need. By 2011 there were 178 disabled people with personal budgets totaling 2.7 million Euros, protected by special resolution and under the constant monitoring of disabled people’s organisations such as Consequor and FISH. (more…)

ENIL on the Joint Committee on Human Rights Report on Independent Living and UNCRDP

Rights of disabled people may be at risk, says Human Rights Committee 

The disability movement/Independent Living movement of the UK is very pleased about the outcome of this report. It was exactly what we needed after almost two years of challenging the government on how the cuts and austerity measures were affecting disabled people’s ability to live independently.

The report is highly critical of the government’s measures in cutting back services, and the ILF (Independent Living Fund) which is putting disabled people at severe risk for the future.

This is by far the most comprehensive critique of an EU Member State policies which are affecting disabled people severely. No other governmental level report has come out in Europe highlighting the impact the austerity measures are having on Independent Living. This report can be very useful for the Independent Living movement throughout Europe in challenging their current austerity policies.

The question is whether the UK government will take this seriously or just ignore it. (more…)

Reprint: Disabled people have come so far – don’t undo all the progress

The UK is at risk of breaching international obligations to disabled people, so I’m proud to help safeguard independence

The joint select committee on human rights reports today on its 12-month inquiry into disabled people’s right to independent living. Photograph: Janine Wiedel Photolibrary/Alamy

As a severely disabled person, I am reminded every day of the tremendous progress made over the past 30 years in the UK to enable disabled people to become active citizens. Autonomy and freedom would not have been part of my vocabulary half a century ago. I might have been reliant upon my family for support, with the prospect of being put into an institution when they could no longer cope.

Instead, at 52, I am an independent crossbench peer and member of the joint committee on human rights (JCHR), which reports this week on its 12-month inquiry into disabled people’s right to independent living.

Since leaving university I have had the privilege of being involved in helping develop the complex weave of legislation and public policy necessary for disabled people to live in, and be part of, their community.

Keeping millions of disabled people inactive and dependent is costly, from a financial and moral point of view. I have witnessed disabled people raise families, work or simply be more cost-effective by keeping healthy and taking greater control over their personal care. It’s not been perfect. But by many standards, we were ahead of the game compared with much of Europe.

And now decades of positive progress are at risk of being reversed as economic austerity is used as justification for denying independence.

That is why I am so pleased to be part of the strong and unambiguous stand taken by the JCHR in publishing its report. We listened to a whole range of expert witnesses and took into account extensive research and consultation, looked at the context of the UN convention on the rights of persons with disabilities (UNCRPD), which was ratified by the UK in 2009.

Although I feel I have the right to independent living, the legislative and policy framework simply isn’t in place to make it a right; and what there is, is in danger of disappearing fast.

If my local authority cuts my care package or demands I transfer to NHS care (because they regard using a ventilator as the trigger for health services), I lose control of my life. I might have to leave parliament, or give up work altogether (because I need social care direct payments to do everything, from eating a sandwich to delivering a speech). I am only a few bureaucratic decisions away from returning to the inequality I endured at 18. It wouldn’t take long to transform all my relationships with my colleagues, partner, family, friends into one which gives little or nothing to anyone. Everyone loses.

The fact that all this could happen without my consent hangs over me and thousands of others. That is why I am so glad the JCHR report recognises and recommends the need for freestanding legislation to protect the right to independent living in UK law.

The report addresses recent government and local authority measures and austerity reforms that impact upon independent living for disabled people; such as reforms to disability living allowance and housing benefit, closure of the Independent Living Fund and restricting eligibility for social care to “critical or substantial” needs only.

The JCHR found no tangible evidence of the government giving due consideration to the UK’s obligations under the UNCRPD during this critical reforming time.

This lack of regard to the convention, coupled with the potentially retrogressive impact of these reforms, risks placing the UK in breach of its international obligations. This report is so timely. It sets out the risks to progress on independent living and makes sensible, achievable recommendations.

The UK’s international reputation in public policy and legislation which places more power in the hands of disabled people to assume control over their own lives, and to be included in all areas of life, is clearly in jeopardy.

Independent living has never made more sense. The government must heed the JCHR report and act fast. Otherwise history will repeat itself – the next generation of disabled people should not have fewer rights than I’ve had.

U.K.: Rights of disabled people may be at risk, says Human Rights Committee



No 87, Session 2010-12, 27 February 2012 


The Joint Committee on Human Rights (JCHR) today publishes its Report on the implementation of the right of disabled people to independent living in the context of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which was ratified by the UK in 2009. The Report draws attention to a number of significant human rights issues, including:


·         the need for freestanding legislation to protect the right to independent living in UK law,

·         the effect of current reforms to benefits and services on the ability of disabled people to enjoy independent living,

·         the role played by the UNCRPD in policy development and decision making at all levels of government,

·         the use of equality impact assessments,

·         the effects of devolution on implementation of the UNCRPD, and

·         hate crime


The right to independent living does not exist as a freestanding right in UK law. Although it is protected and promoted to some extent by a matrix of rights, the Committee believes that this is not enough. It argues that the Government and other interested parties should immediately assess the need for, and feasibility of, legislation to establish independent living as a freestanding right. In addition, the Committee concludes that the UNCRPD is hard law, not soft law, and that the Government should fulfil their obligations under the Convention on that basis, and counter any public perception that it is soft law.


The Committee finds that:


·         reforms to benefits and services risk leaving disabled people without the support they need to live independently;

·         restrictions in local authority eligibility criteria for social care support, the replacement of the Disability Living Allowance with Personal Independence Payment, the closure of the Independent Living Fund and changes to housing benefit risk interacting in a particularly harmful way for disabled people;

·         some people fear that the cumulative impact of these changes will force them out of their homes and local communities and into residential care.


It also finds that:


·         the Government had not conducted an assessment of the cumulative impact of current reforms on disabled people. The Report urges them do so, and to report on the extent to which these reforms are enabling them and local authorities to comply with their obligations under the UNCRPD.


·         the UNCRPD did not appear to have played a significant role in the development of policy and legislation, as is required by the Convention. The Committee therefore argues that the Government should make a commitment to Parliament that they will give due consideration to the articles of the Convention when making legislation.


Further, the Committee deprecates changes to the duties of public authorities in England under the Equality Act 2010, which no longer require the production of equality impact assessments of changes in policy, nor the involvement of disabled people in developing policies which will affect them.


The Committee finds variations in the manner in which the devolved administrations have implemented the Convention, and uncertainty as to the role the UK Government should play in ensuring implementation. The Report notes with disappointment the lack of a strategy in Northern Ireland to promote independent living and reminds the UK Government to acknowledge their responsibility to ensure implementation.


The Committee also considers a range of other issues relating to independent living. It recommends that the Government should take further action to ensure that assessments for care needs are portable across the country in order to ensure disabled people’s right to choose their place of residence. It also expresses concern over a growing incidence of hate crime against disabled people and urges the Government take action to foster respect for the rights and dignity of disabled people.



Dr Hywel Francis MP, Chair of the Committee, said: “We are concerned to learn that the right of disabled people to independent living may be at risk through the cumulative impact of current reforms. Even though the UK ratified the UNCPRD in 2009 with cross-party support, the Government is unable to demonstrate that sufficient regard has been paid to the Convention in the development of policy with direct relevance to the lives of disabled people. The right to independent living in UK law may need to be strengthened further, and we call on the Government and other interested organisations to consider the need for a freestanding right to independent living in UK law.”



The members of the Committee Are:

Rehman Chishti MP (Conservative Gillingham and Rainham)
Baroness Berridge (Conservative)
Mike Crockart MP (Liberal Democrat Edinburgh West)
Lord Bowness (Conservative)
Dr Hywel Francis MP (Labour Aberavon) (Chair)
Baroness Campbell of Surbiton (Cross-Bencher)
Mr Dominic Raab MP (Conservative Esher and Walton)
Lord Dubs (Labour)
Mr Virendra Sharma MP (Labour Ealing Southall)
Lord Lester of Herne Hill (Liberal Democrat)
Mr Richard Shepherd MP (Conservative Aldridge-Brownhills)
Lord Morris of Handsworth (Labour)


Clerks to the Committee:

Mike Hennessy (House of Commons) 020 7219 2797 John Turner (House of Lords) 020 7219 6772

Enquiries: 020 7219 2467        Fax: 020 7219 8393        E-mail:

Media Inquiries:  Liz Parratt: 07917 488978.

DPAC: Letter warns Government that Scrapping ILF would ‘wreck lives’

DPAC: Letter warns Government that Scrapping ILF would ‘wreck lives’

All photos © 2012 Pete Riches

Campaigners have handed the government a letter signed by hundreds of user-led organisations and disabled activists, in an effort to save the Independent Living Fund (ILF).

The letter, written by the campaign group Disabled People Against Cuts (DPAC), warns that scrapping ILF would “wreck disabled people’s lives” and push them into residential institutions rather than allowing them to live independently in the community. (more…)

Spotlight: Hearing in the European Parliament: “Defend the Right of Independent Living – How the EU’s austerity policy is undermining the lives of people with disabilities.”

On the 9th February 2012 ENIL and the European parliamentary group GUE/NGL (European United Left/Nordic Green Left) held a hearing in the European Parliament. The purpose of this hearing was to show from a number of perspectives how people with disabilities are being negatively affected by the EU current austerity policies. This is the first time that ENIL has held a hearing in the European Parliament. ENIL presented its ‘Proposal for a European Parliament Resolution’ on the effect of the cuts. The hearing was received positively in the European Parliament and three Members of the Parliament participated in the hearing, Kartika Liotard, MEP, Netherlands, Cecilia Wikstrom, MEP, Sweden and Paul Murphy, MEP, Ireland. The hearing was streamed live and there was up to two hundred people watching online throughout the hearing, with approximately eighty people in the Parliament itself.

The hearing began on a optimistic tone with MEP Cecilia Wikstrom’s opening address in which she made it clear that the although the financial climate is affecting every faction of society that hope is necessary at this time.

Panel 1: Understanding the impact of austerity measures on persons with disabilities

The hearing was in two parts with two different panels. Understanding the impact of the austerity measures on persons with disabilities was the focus of the first panel. Throughout this first panel, four themes emerged; (a) disability and policy, (b) de-institutionalisation, (c) disability and the media and (d) individual accounts that were shared.

(a)   Disability and Policy: Since the financial crisis there has been an impact on the way in which policy has been implemented, interpreted and devised. One of the most important issues raised by Prof. Alan Roulstone (Expert on global and European disability policy)  was that short term cuts often ignore the long term benefits. These policy decisions do not just have economical effect, but social and political effects. John Evans OBE ( Advisory Board member of ENIL)  noted that throughout this financial crisis, it is the welfare systems that have been hit hardest and further reductions would increase poverty. He pointed out that many of these cuts have been made without any dialogue between governments and those whose benefits they are cutting. John Evans further argued, Independent Living has positively changed people’s lives, however some people are now struggling to survive. (more…)

Disability watchdog: Update on current events in Hungary

“We would like to make you aware of current concerns that disabled people in Hungary are faced with. Recently the Hungarian Government changed the whole disability pension system, which will be a lot worse than the previous system especially for disabled people. The biggest changes are connected to the rights that arise from the pension system. According to the new system the 1st and 2nd disability groups will remain unchanged, but persons belonging to the 3rd group will be reviewed and according to the decision of the reviewing committee some of them will no longer receive the pension as they did according to the old system. Those who fall out of the 3rd disability group under this new system will be obliged to take part in a rehabilitation programme at the end of which it is intended that they find employment in the labour market. However considering the current situation even non-disabled well-trained persons with university degrees can’t find employment as at the present time in Hungary it is almost impossible to find employment, similar to what is happening in the rest of Europe.


In addition to that there has also been the introduction of new regulations for people with serious physical disabilities obtaining a new car. These regulations effectively mean that the individuals who the car is for will not be able to use it themselves because it will only be possible to get small cars that are not big enough to take wheelchairs. Furthermore the cars will not be adapted or automatic and the monthly rate to obtain a car is very high.


In the case of obtaining a used car (second hand car), the amount of co-financing was raised to 2000 EUR, however this amount must represent at least 60% of the full price with the other 40% paid by the applicant.


Changes in repairing (servicing) of technical devices have also been introduced together with the new disability pension system. According to this new system for example:

For repairing a wheelchair, the travel costs for the mechanic to get to the person and the wheelchair that needs to be repaired, will have to be paid by the user as the Health Insurance system will no longer cover such expenses. In practice this new system will mean that if someone has a scooter financed by the Health Insurance Company, that person will not be able to claim for a wheelchair from the Health Insurance Company; although for many of us this is necessary in addition to a scooter to maintain our independent living.”

Disability watchdog: Giovanni is losing his personal assistance

Photo: Jessica Linder Jansson

Since 2006, 14 year old Giovanni has been in receipt of 70 hours of personal assistance per week and has chosen to have his personal assistance through the JAG cooperative. Just before Christmas the National Swedish Social Assurance Agency decided that he no longer qualifies for personal assistance. 

Giovanni depends on continuity because of his disability and he needs personal assistance to be able to manage his daily life.  With personal assistance, his daily life improved significantly, especially since Giovanni’s personal assistants were educated in how to respond to his behaviour to minimize his self-harming when he is not feeling good.

Now, his life is in complete chaos.  Without his personal assistants, his problems are starting again. Giovanni’s outward behaviour is escalating and he is starting to hurt himself again. Giovanni’s mother appealed to court to review the decision but does not know how long this process will take.  Meanwhile Giovanni is living his life without personal assistance.

Previously Giovanni’s mother was employed as one of her son’s personal assistants.  Now she’s unemployed but she can’t take another job because then Giovanni would be left alone.  Another issue with this is that now Giovanni can’t choose who he would like to assist him.

Press release: ENIL and European United Left/Nordic Green Left Hold a Parliamentary Hearing on the Impact of EU’s Austerity Policy on Persons with Disabilities

On 9 February 2012, the European Network on Independent Living (ENIL) and the group of the European United Left/Nordic Green Left are holding a hearing in the European Parliament entitled ‘Defend the Right of Independent Living – How the EU’s austerity policy is undermining the lives of people with disabilities’. Some of the leading European independent living and anti-poverty activists will present evidence of the impact EU’s austerity policy has had on disabled people in the Member States and together with Members of the European Parliament identify actions to be taken at the European level.


‘With or without the financial crisis, we are among the poorest and most socially excluded in Europe’, warned Jamie Bolling, ENIL’s Executive Director. According to the EU Disability Strategy 2010-2020, the incidence of poverty for persons with disabilities is 70 per cent higher than average. Employment rates for persons with very severe and severe disabilities are respectively 19.5 per cent and 44.1 per cent. Combine this with the cuts to essential services such as personal assistance, access to employment and housing support, and the consequences could be catastrophic.


Hearing in the European Parliament


Thursday 9 February 2012 – European Parliament Brussels

 To watch the video of the hearing,

please click on the following link

See the Press Release here

The European Network on Independent Living (ENIL) would like to invite you to a hearing in the European Parliament entitled ‘Defend the Right of Independent Living – How the EU’s Austerity Policy Is Undermining the Lives of People with Disabilities’. The hearing will take place on 9 February 2012 (15:00 – 18:30, Room A1G2), and will be hosted by the European United Left/Nordic Green Left Parliamentary Group.

ENIL and its partner organisations will present evidence about the impact austerity measures are having on people with disabilities in the European Union, and will set out actions that can be taken by the European Parliament and the European Commission to address this situation. These will include the ENIL Proposal for the European Parliament Resolution on the effect of cuts in public spending on services for persons with disabilities in the EU.

To register, please send an e-mail by 2 February 2012 to In case you do not have access to the Parliament, please include your date of birth and passport number.

Download the Programme (Updated!) and the Poster.

See ENIL’s Proposal for a Resolution of the European Parliament on the effect of cuts in public spending on persons with disabilities in the European Union. (Available in 8 EU languages)

Help us to lobby EU politicians for our rights!

Save the date: Online seminars on the UNCRPD

The Scottish Human Rights Commission and the Equality and Human Rights Commission are holding a series of free online seminars about how the UN Disability Convention relates to what disabled people have told the Commission’s are the main barriers remaining to allow disabled people in Scotland to enjoy the full range of rights to which they are entitled. The first of these took place in December and you can watch or listen to a recording of the seminar.


The next seminar will take place on Monday 16 January and will discuss ‘Getting Justice’. The guest speaker will be from the Legal Services Agency and the seminar will cover some of the evidence disabled people have already told the Commission’s about access to justice – such as concerns from learning disabled people about using and accessing the court system, fears about reporting harassment and alternatives to court action – then the seminar will outline what the Convention says about access to justice and about how the Convention could be used in Scotland. During the discussion you can ask questions, suggest action that needs to be taken and share your own experiences. (more…)

ENIL Hearing on Cuts at the European Parliament

Save the Date!

9 February 2012, European Parliament


On 9 February 2012 ENIL is holding a hearing at the European Parliament entitled ‘Defend the Right of Independent Living – How the EU’s Austerity Policy Is Undermining the Lives of People with Disabilities’. The hearing is hosted by the European United Left / Nordic Green Left Parliamentary Group.


ENIL and its partner organisations will use the hearing to present evidence about the impact austerity measures are having on people with disabilities in the EU, and will set out actions that can be taken by the European Parliament and the European Commission to address this situation. These will include the ENIL Proposal for the European Parliament Resolution on the effect of cuts in public spending on persons with disabilities in the EU.


The hearing will take place on 9 February, 15:00 – 18:30, at the European Parliament inBrussels. Programme will be available by the 15 January 2012. To register, please write to the ENIL Secretariat at (please include your nationality, date of birth and passport/ID number, so we can arrange your access into the Parliament). Unfortunately, ENIL cannot cover participants’ travel or accommodation costs.


Read the ENIL Proposal

DOC Format

PDF Format


Link to a related article:

Independent Living Fund (ILF) in the UK: DPAC Signature campaign

To add your signature please email, or 


‘DPAC Independent Living Fund letter

Thousands of disabled people rely on funding from the Independent Living Fund to enable them to live independently with choice and control over their lives. ILF users have been left shocked and extremely anxious since it was announced in 2010 that it would be closed down by government in 2015. Already closed to new applicants since May 2010 this decision was taken with no evidence of an equality impact assessment having taken place nor any consultation carried out with current and potential beneficiaries of the fund.

 “The Independent Living Fund is a ring fenced resource, for a priority group of disabled people with high support needs that can provide a better lifestyle and outcomes for service users whose full needs would not be met by local authority funding. “


John Evans from ENIL speaks to Europe about the devastating effect of the cuts

One of the greatest experts on Independent Living, John Evans, uses every opportunity to warn people with disabilities, policymakers and other stakeholders about the effects of the cuts in public spending that are going on. In many European countries governments take inhuman, irrational and contra productive decisions to cut budgets that are necessary to make Independent Living possible for people with disabilities.

John Evans was interviewed on this important topic by the EU Fundamental Rights Agency. He also delivered a strong speech on the European Day of People with Disabilities on December 1stin Brussels. (Link in FRA website)

Download the full speech: The impact of the austerity measures on disabled people in Europe

Video: John Evans from the ENIL speaks to the FRA about the economic crisis, during a recent meeting of the FRA’s disability project

U.K. Disability activists fight cuts with (first) success!

A protester in a wheelchair at the Hardest Hit march. Photograph: Lefteris Pitarakis/AP

The wave of inhuman and inefficient policy decisions that hit people with disabilities disproportionally in many European countries is still on a roll and is affecting or threatening our Quality of Live and our Human Rights. Naturally this can make you feel sad and victimized, … but if we don’t stand up against this, no one else will do it for us.

That is why joining the Independent Living movement is now more important than ever. That campaigning for your rights is rewarding can be learned from a first success in the U.K..

Read more about it:

Europe’s way out of the crisis: the disability rights perspective

Source: EDF web

Brussels, 1 December 2011 /// To mark the European Day of Persons with Disabilities, the European Commission organised in cooperation with the European Disability Forum (EDF) a policy conference in Brussels on 1 and 2 December. During two days, representatives from the disability movement, experts with disabilities and decision-makers focus on the effects of the crisis: “Europe’s way out of the crisis: the disability rights perspective.” It is particularly necessary since the EDF Observatory on the crisis has compiled an alarming report that reveals persons with disabilities are paying for the economic crisis by the reduction in incomes, services  and employment.


In this challenging time of crisis, the 80 million persons with disabilities in Europe are among the worst hit by the unprecedented austerity measures being put in place across the EU. As governments want to reduce their budget deficits, social services are being seriously cut back. A report compiled by the European Disability Forum Observatory on the effect of the crisis shows that persons with disabilities are feeling effects of the austerity in a variety of ways, including cuts in disability allowances, being obliged to massive reassessments of disability status and a reduction in services. This crisis is also affecting the capacity of organisations of people with disabilities to represent the interests of millions of disabled people in European countries.


The Swedish crisis

The Independent Living movement in Sweden has a long history of demonstrations. Now it’s time to take on the placards again and rescue assistance!

Country after country uses the economic crisis to cut the funding of reforms of personal assistance. In Sweden the savings proposals is threatening the world’s best personal assistance legislation.

Due to recent figures from the Swedish Social Insurance Agency (who is responsible for all matters of personal assistance in Sweden) about five percent of the assistance users now are losing their personal assistance after their needs have been reviewed. They are no longer considered to have at least 20 hours of basic needs per week*, often because they are able to bring the spoon or fork to their mouth (not necessarily with food on).

The Social Insurance Agency has also pioneered the use of the term “active” time. This means that if you have need of assistance a few minutes now and again but manage yourselves in between, you are only granted assistance specifically for the active time.
Even people with more complex needs have had drastic cuts in their assistance. There are members in JAG who have lost their assistance hours at night despite the needs being uniformed, for example persons with epilepsy who are unable to alert in need of assistance.
The Social Insurance Agency is also trying to make the application of assistance benefit more “unified” by, among other things, define what specific activities and situations that should be considered as part of daily life. The Swedish Independent Living movement is of course questioning on what grounds the Social Insurance Agency considers it’s their mandate to define the law. It is totally against the intentions of the assistance legislation to deny someone support by reference to a norm! (more…)