Poverty and Social Exclusion of Persons with Disabilities

European Human Rights Report

Issue 4 - 2019

By Haydn Hammersley

With guest contributions by Lillie Heigl, Tania Katsani, Mia Ahlgren, Luisa Bosisio Fazzi and Kamran Mallick

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An accessible PDF and Easy to Read version of this report is available onEDF’s website: www.edf-feph.org

Lead author: Haydn HammersleyGuest authors: Lillie Heigl, Tania Katsani, Mia Ahlgren, Luisa Bosisio Fazzi and Kamran Mallick Editor: Catherine NaughtonEasy-to-read Editor: Graphic design:

Particular thanks to the European Anti-Poverty Network (EAPN) and the European Federation of National Organisations Working with the Homeless (FEANTSA) for their help and guidance, to everyone who took part in the review process to ensure the accuracy of the report, and to those who kindly offered their personal testimonies to help us bring home the message of the impact poverty and social exclusion has on persons with disabilities.

LOGO OF EDF new address1000 Brussels - Belgiumtel +32 2 282 46 00fax +32 2 282 46 09info@edf-feph.orgwww.edf-feph.orgTwitter: @MyEDF

Any questions or feedback - contact us by email at info@edf-feph.org and Haydn.Hammersley@edf-feph.org.

LOGO OF THE EU This report was co-funded by the European Union’s Rights, EqualityFunded by the European Union

and Citizenship Programme. The European Union was not involved in the preparation and publication of this report. The European Disability Forum recognises that the opinions expressed do not necessarily reflect the position of the European Union.

©2018-2019 European Disability Forum

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ContentsGlossary.........................................................................................................................................6

Foreword.......................................................................................................................................7

Summary........................................................................................................................................7

Chapter 1: Background - The United Nations Convention on the Rights of Persons with Disabilities 8

Chapter 2: Persons with disabilities and the risk of poverty and social exclusion.............................9

How big is the problem?....................................................................................................................9

How does the situation vary throughout the EU?.............................................................................9

How are women affected?..............................................................................................................10

Does age play a role in the risk of poverty and social exclusion?....................................................11

What is the situation for people born outside the EU, and ethnic minorities?................................11

What is the situation for persons with disabilities in rural settings?...............................................11

What about households containing persons with disabilities?........................................................12

What are the extra costs of living in a society poorly adapted to the needs of persons with disabilities?......................................................................................................................................13

Are there Member States where disability-related living costs are higher?....................................13

Chapter 3 – Disability assessment and national spending on disability..........................................14

So how much do different countries invest in supporting persons with disabilities?......................14

How do different countries conduct disability assessment?............................................................16

Methods of Assessing Disability.......................................................................................................16

Inclusion of Person with Disability in the Assessment Process........................................................17

Inclusion of Disabled Peoples’ Organisations (DPOs) in the Assessment Process............................17

Centralised source of information about Disability Assessment......................................................17

Inconsistency across the EU for defining disability and the deprivation of the freedom of movement.......................................................................................................................................18

Chapter 4 – Extreme poverty and homelessness...........................................................................19

What do we know about homelessness among persons with disabilities?.....................................20

Chapter 5 : The legacy of the financial crisis and austerity.............................................................20

Greece.............................................................................................................................................21

Sweden............................................................................................................................................22

Italy..................................................................................................................................................23

United Kingdom...............................................................................................................................25

Spain................................................................................................................................................25

Chapter 6 – Employment of persons with disabilities....................................................................26

Shortcomings of the data................................................................................................................26

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Which countries are particularly affected by poor unemployment rates for persons with disabilities?......................................................................................................................................27

Where do we see the biggest gaps between persons with and without disabilities?......................27

What about women with disabilities?.............................................................................................28

What do we know about the impact of type of disability on employment rates?...........................29

What are the barriers to employment for persons with disabilities?..............................................29

What policies exist in different member states for the employment of persons with disabilities?.30

What policies exist at the EU level for the employment of persons with disabilities?....................31

What do we mean by “reasonable accommodation”?....................................................................32

Chapter 7 - EU Commitment to Poverty and Social Exclusion........................................................33

The ratification of the UNCRPD.......................................................................................................33

The Treaty on the Functioning of the European Union....................................................................34

European Pillar of Social Rights.......................................................................................................35

2030 Agenda for Sustainable Development and the Sustainable Development Goals....................36

The Europe 2020 Strategy...............................................................................................................37

EU Disability Strategy 2010-2020....................................................................................................37

Conclusion....................................................................................................................................38

Policy Recommendations..............................................................................................................39

Recommendations for the EU level.................................................................................................39

Recommendations for the national and regional level....................................................................40

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European Disability Forum’s series of Human Rights Reports

The European Disability Forum (EDF) is an independent organisation of persons with disabilities representing the interests of more than 80 million persons with disabilities in Europe. This is the forth issue of our Human Rights Report Series. EDF is publishing a series of Human Rights Reports on the rights of persons with disabilities, selecting topics based on what is most relevant to EDF’s members and policymakers across Europe.

The first issue of the EDF series of Human Rights Reports focused on the United Conventionon the Rights of Persons with Disabilities (CRPD), marking its 10th anniversary and providing an overview of the commitment to the CRPD in Europe. The second issue gave an overview of the state of play on the 2030 Agenda for Sustainable Development and the Sustainable Development Goals (SDGs) in Europe and the associations with implementation of thethe linkages with the CRPD. The third report focused on equality and protection against discrimination for persons with disabilities. This new issue focuses on poverty and social exclusion faced by persons with disabilities. This is an important topic right now for EDF. Despite progress in ratification of the CRPD, there have not been improvements in the living conditions of persons with disabilities and their families. It is essential to explore this now- what is the poverty situation of persons with disabilities? What causes it? What must policy makers do about it?

All EDF Human Rights Reports are available on EDF’s webpage: http://www.edf-feph.org/otherpublications.

The purpose of this series of reports is to track progress over time on the realisation of the rights of persons with disabilities in Europe .. The series stimulates comparison between European countries, and studies key aspects of the implementation of the CRPD at national and European levels and provides recommendations to policy makers at both national and EU levels.. The EU and all of its As of 2018, all EU Member Member States and the EU itself have ratified the CRPD, albeit with some important gaps.: N not all countries have ratified the Optional Protocol to the CRPD and many States have made declarations and reservations which limit their commitment to the Convention.

This new issue on poverty and social exclusion faced by persons with disabilities includes a comparative study of poverty rates for persons with disabilities in different Member States, with a particular focus on the impact of the economic crisis and austerity measures. It also explores the impact of different disability assessment models throughout the EU and provides an overview of the employment situation for persons with disabilities in different countries. Finally, this issue explores the obligations of the EU and its Member States to tackle this pressing issue, before providing clear policy recommendations for how policy-makers can act upon their commitments.

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Methodology

The form taken by the Report was developed by EDF’s Social Policy and Inclusion Committee and agreed upon by EDF’s Executive Committee. It was written with the help of a number of special guest authors, and supported by individuals who were willing to share their personal stories to highlight the human side of the issues at hand. All country-specific information was verified by the national disability councils of the EU Member States, and the report as a whole underwent a review process with EDF’s Boards Members.

The comparative data between Member States on poverty levels and employment, has been taken from the latest available European Union Statistics on Income and Living Conditions (EU SILC), collected in 2016. EU SILC is an EU data-collection instrument focusing on income, poverty, social exclusion and living conditions. It is important to note that figures from EU SILC can differ from national data, and in cases show lower figures for poverty and unemployment among persons with disabilities. This can partly be because EU SILC only targets people living in private households, thus to the exclusion of people living in institutions or experiencing homelessness. It can also come down in part to EU SILC and national statistics collection setting different thresholds when classifying a person as having a disability.

Furthermore, the sub-indicator “at-risk-of-poverty rate after social transfers” used by EU-SILC should be viewed with some caution. This measures people living in a household with a household equivalised disposable income of less than 60% of the median national average after social transfers. Therefore, poverty thresholds are relative to the general income distribution of each country. In other words, in countries with low average household income, the level of disposable income would have to be far lower to class a household as at risk of poverty than in rich countries. In other words, the poverty thresholds are arbitrary and do not reflect real poverty in terms of living conditions, but rather how much disposable income you have compared to others in your country. It also means that, in countries where income levels were slashed during the financial crisis, a household maintaining the same level of income might no longer be classed as “at risk of poverty” despite the fact that their living conditions have not improved, but simply because the condition of those around them has gotten worse.

The form taken by the Report was developed by EDF’s Social Policy and Inclusion Committee and agreed upon by EDF’s Executive Committee. It was written with the help of a number of special guest authors, and supported by individuals who were willing to share their personal stories to highlight the human side of the issues at hand. All country-specific information was verified by the national disability councils of the EU Member States, and the report as a whole underwent a review process with EDF’s Boards Members.

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Glossary

Person with disabilities: In line with Article 1 of the United Nations Convention on the Rights of Persons with Disabilities, refers to those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

Poverty: defined in this publication as below the at-risk-of-poverty threshold, which is set at 60 % of the national median equivalised disposable income after social transfers.

Social Exclusion: a process whereby certain individuals are pushed to the edge of society and prevented from participating fully by virtue of their poverty, or lack of basic competencies and lifelong learning opportunities, or as a result of discrimination. This distances them from job, income and education opportunities as well as social and community networks and activities. They have little access to power and decision-making bodies and thus often feeling powerless and unable to take control over the decisions that affect their day to day lives

United Nations Convention on the Rights of Persons with Disabilities (CRPD): an international human rights treaty that reaffirms that all persons with disabilities must enjoy all human rights and fundamental freedoms. It clarifies that all persons with disabilities have the right to participate in civil, political, economic, social and cultural life of the community just as anyone else

States Parties (to the CRPD): countries that have signed and ratified the CRPD and have committed to making the rights of persons with disabilities a reality. The European Union, having concluded the CRPD, is also a State party together with all its Members States.

Discrimination: Any distinction, exclusion or restriction on the basis of one or several grounds (sex, race, disability, sexual orientation, gender identity, etc.) which damage or nullify the recognition, enjoyment or exercise, on an equal basis with others, of human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field.

Reasonable accommodation: necessary and appropriate modification and adjustment, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise of their human rights and fundamental freedoms on an equal basis with others. To be “reasonable” the accommodation cannot impose a disproportionate or undue burden. Denial of reasonable accommodation is a form of discrimination.

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European Commission: the EU’s politically independent executive arm. Its core responsibilities include proposing EU laws and policies and monitoring their implementation.

European Union (EU): a unique economic and political union between 28 European countries, as it stands at the time of the creation of this publication.

Member States (of the EU): the EU currently consists of 28 countries, also called “Member States”. Each Member State is party to the founding treaties of the Union, and thereby subject to the privileges and obligations of membership. Unlike members of most international organisations, the Member States of the EU are subject to binding laws in exchange for their representation within the common legislative and judicial institutions.

(EU) Directive: legislative act that sets out a goal that all EU countries must achieve. The directive must be transposed at national level. It means that it is up to the individual countries to decide on the basis of their own laws how to reach these goals.

European Disability Forum (EDF): an independent organisation representing the rights of 80 million persons with disabilities in Europe. It is a unique platform that brings together representative organisations of persons with disabilities from across Europe and is run by persons with disabilities and their families.

Foreword

Coming soon.

Summary

The level of poverty and social exclusion in 21st-century Europe is alarming. According to recent figures, a shocking 20.9% of people in the European Union (EU) are at risk1. However, when we talk specifically about persons with disabilities, this figure skyrockets to almost 30%. In this fourth edition of the European Disability Forum’s Human Rights Report, we will take stock of the true extent of this problem in the EU.

We will explore the reasons why having a disability, or even living in a household with a person with disabilities, can greatly increase your risk of poverty and social exclusion. We will also assess the additional cost of living that can come from living with a disability in a society ill-equipped to include meet the needs of persons with disabilities. Beyond this, we will study the link between disability and extreme cases of poverty, particularly homelessness, in connection with certain forms of disability.

Any analysis of poverty and social exclusion in the EU would be incomplete without focusing on the recent financial crisis and the impact of austerity. This publication will analyse the extent to which the crisis has impacted poverty rates among persons with disabilities in different Member States, and why it is that persons with disabilities appear to have borne the brunt of the economic downturn.

This publication also delves into the important issue of employment for persons with disabilities, showing that in all Member States persons with disabilities are at a far higher risk of unemployment than those without disabilities, and exploring some of the key barriers standing in the way of inclusion in the open labour market. We will also explore how certain types of disability, in particular, are shown to have a disproportionate impact on unemployment rates.

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Our report will look at the role of disability assessment and benefits in the prevention of poverty and social exclusion, and will ask the question of how well-adapted the various systems in place around the EU are to meet the needs of persons with disabilities.

Finally, we will study what action is being taken in different EU Member States to curb the problem, as well as what the EU itself is doing to address the issue.

The learning from our research has been channelled into clear recommendations for action to be taken by national and EU policy makers. You will find these recommendations in the final section.

Chapter 1: Background - The United Nations Convention on the Rights of Persons with Disabilities

The CRPD is an international human rights treaty reaffirming that persons with disabilities enjoy all human rights and fundamental freedoms. It clarifies that persons with disabilities have the right to participate in civil, political, economic, social and cultural life in the community, just as anyone else. The CRPD stipulates what public and private authorities must do to ensure and promote the full enjoyment of these rights by all persons with disabilities.

The CRPD was adopted on the 13th of December 2006 by consensus of the General Assembly of the United Nations (UN). On the 30th of March 2007, the CRPD was opened for signature at the UN Headquarters in New York. On publication of this report, 177 countries worldwide (91% of UN Member States) and the European Union (EU) are States Parties to the CRPD, making it the world’s most quickly-ratified international human rights treaty.1

In Europe, the CRPD has also been ratified rapidly. The EU has been a State Party to the CRPD since 2011. Ireland was the last EU Member State to ratify the Convention in March 2018; this means that now every Member State of the EU has ratified. It is the first time that there has been universal ratifiy cation of an international human rights treaty in the EU.

All the candidate countries to the EU (Albania, Montenegro, Serbia, the Former YugoslavRepublic of Macedonia (FYROM) and Turkey) have ratified the CRPD, as well as all EuropeanEconomic Area/European Free Trade Association (EEA/EFTA), except Liechtenstein. TheEuropean microstates of Andorra, San Marino and Monaco have also ratified. EDF calls on Liechtenstein to ratify the CRPD without further delay.

The EU has not concluded the Optional Protocol yet. Twenty-two out of the 28 EU Member States have ratified the Optional Protocol. All the candidate countries and the European microstates have

1 See the United Nations’ overview of countries that have ratified: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

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ratified, including Monaco on 27 June 2019. None of the EEA/EFTA countries have ratified it. The United Nations Committee on the Rights of Persons with Disabilities (CRPD Committee) consistently calls on each State Party to ratify the Optional Protocol. EDF calls on the EU as well as on Bulgaria, Czechia, Ireland, the Netherlands, Poland, Romania, Iceland, Liechtenstein, Norway and Switzerland to ratify the Optional Protocol.

You can read the full text of the CRPD and the Optional Protocol on the web page of the CRPD Committee: www.ohchr.org/EN/HRBodies/CRPD.

States Parties are obliged to submit an initial report to the CRPD Committee on measures taken to implement the CRPD two years after the CRPD comes into force in their country. Some EU Member States have not sent in their first state report to the CRPD Committee, thereby blocking the process of review the Committee on the progress of implementation of the CRPD made in that country: Finland (state report was due 11 June 2018), Roumania (state report was due 2 February 2013) Iceland (state report was due 23 October 2018) and San Marino (state report was due 22 March 2010). The state report for Monaco is due on 19 October 2019. EDF calls on Finland, Rumania, Iceland and San Marino to urgently submit itstheir initial state report to the CRPD Committee.

Chapter 2: Persons with disabilities and the risk of poverty and social exclusion

How big is the problem?The most recent data released by the European Commission suggests that there are currently 99 million persons with disabilities in the EU above the age of 16. Among these 99 million, 30.5 million would class themselves as having a “severe disability”2.

What the data reveals, without any ambiguity, is that being a person with disabilities in the EU significantly increases your risk of poverty and social exclusion. Figures suggest that 29.95% of all persons with disabilities currently live in a state of poverty and experience social exclusion3. In line with the number of people who identify as having a disability according to this data source, we can therefore estimate that poverty and social exclusion is a reality for just under 30 million persons with disabilities in the EU.

How does the situation vary throughout the EU?Without exception, persons with disabilities are shown to face a higher risk of poverty and social exclusion in every one of the EU’s 28 Member States4. However, the situation is far from uniform.

*Insert graphic*

heading “Percentage of persons with disabilities at risk of poverty and social exclusion by Member State”

Insert an EU map based on the information below.

Light colour for countries with 19%-24% risk (Slovakia 19.35%, Czechia 20.7%, France 20.8%, Austria 22.05%, Finland 23.65%, Luxembourg 23.7%);

Darker colour for countries with 24%-30% (Denmark 24.1%, Slovenia 24.35%, Netherlands 24.5%, Poland 29.2%);

darker colour for 30%-35% (Italy 30.7%, Spain 31.2%, Portugal 31.85%, UK 32.15%, Sweden 32.25%, Hungary 32.4%, Malta 32.4%, Germany 32.65%, Belgium 32.85%)

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darker colour for 35%-40% (Greece 35.35%, Cyprus 35.65%, Estonia 38.6%, Romania 38.6%, Croatia 38.75%)

darker colour for 40%-50% (Ireland 40.9%, Latvia 41.65%, Lithuania 43.75%2) Darkest colour for 50%< (Bulgaria 53.6%)

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actual percentages shown for each country.

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Certain countries see soaring rates of poverty and social exclusion for persons with disabilities. The worst case appears to be Bulgaria, where over half of all persons with disabilities are at risk (53.6%). Other countries also fair particularly badly, including Lithuania (43.75%), Latvia (41.65%) and Ireland (40.9%). Other countries where the poverty rates of persons with disabilities are particularly high are Greece (35.35%), Cyprus (35.65%), Estonia (38.6%), Romania (38.6%) and Croatia (38.75%).

What is also crucial to observe is not only the percentage of persons with disabilities at risk, but how much more at risk persons with disabilities are than the general population. A stark difference in poverty risk between those with and without disabilities can go some way towards indicating which countries offer insufficient support for their disabled community. It can also provide an indication of how well the UNCCRPD is being implemented to promote better opportunities for persons with disabilities, comparable to what is available to persons without disabilities.

Again, when looking at the increased risk of poverty and social exclusion for persons with disabilities compared to the general population, the situation varies greatly from one country to another.

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Heading: “Increased risk of poverty and social exclusion for persons with disabilities in percentage points by Member State”

Insert an EU map based on the information below.

Countries with 0-5 percentage points increase, lightest colour (Greece 0.05 percentage points, Italy 2.1 percentage points, Slovakia 3.75 percentage points, Romania 2.7 percentage points, France 5 percentage points)

5-10 percentage points, darker colour (Spain 5.1 percentage points, Luxembourg 6.1 percentage points, Austria 7.05 percentage points, Slovenia 7.65 percentage points, Poland 9.4 percentage points, Denmark 9.4 percentage points, Cyprus 9.95 percentage points, Czechia 10 percentage points)

10-15 percentage points, darker colour (Finland 10.15 percentage points, Portugal 10.45 percentage points, Hungary 10.5 percentage points, Netherlands 11.5 percentage points, UK 14.55 percentage points, Bulgaria 14.8 percentage points, Malta 14.9 percentage points)

15-20 percentage points, darker colour (Croatia 15.35 percentage points, Germany 15.55 percentage points, Belgium 16.35 percentage points, Sweden 16.55 percentage points, Lithuania 19.75 percentage points3, Latvia 19.95 percentage points)

20< percentage points, darkest colour (Estonia 20.1 percentage points, Ireland 21 percentage points)

2 According to the data from official Statistics of Lithuania in the year 2018 this figure is 35,9%3 According to the data from official Statistics of Lithuania in the year 2018 the difference is 18 percentage points

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actual percentage points shown for each country6

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A number of countries see huge disparities between the risk of poverty and social exclusion for persons with disabilities, and those without. The biggest difference appears to be in Ireland, where persons with disabilities are 21 percentage points more likely to be at risk. In the Baltic countries of Estonia, Latvia and Lithuania, persons with disabilities are also disproportionately at risk.

Surprisingly, the countries with the fifth and sixth most increased risk for persons with disabilities are Sweden and Belgium. These are countries typically considered to have well-developed social protection systems. The fact that the risk of poverty and social exclusion is so much higher for persons with disabilities than it is for the general population, suggests that the social protection systems in these countries are ill-adapted to promote inclusion and participation of persons with disabilities.meet the needs of the disabled community.

Are there differences for men and women? How are women affected? Women with disabilities are worse affected than men when it comes to the risk of poverty and social exclusion. On average, figures indicate that 30.8% of women with disabilities in the EU are at risk. For men with disabilities, the proportion of those at risk is 29.1%7.

Again, looking at the EU average alone can hide more extreme situations in a number of Member States. The Baltic countries of Estonia, Latvia and Lithuania fare particularly badly. In Estonia, 43.6% of women with disabilities are at risk of poverty and social exclusion. The proportion of men with disabilities at risk in Estonia is 10 percentage points lower. In Latvia women with disabilities are 8.1 percentage points more at risk than their male counterparts, and in Lithuania the difference is 5.7 percentage points.

In the two countries that joined the EU in 2007, Romania and Bulgaria, women with disabilities are also far more likely to experience poverty and social exclusion than men with disabilities. In Bulgaria a staggering 57.2% of women with disabilities are at risk of poverty and social exclusion, 7.2 percentage points higher than for men. In Romania this is the case for 42% of women with disabilities, meaning that they are 6.8 percentage points more at risk than men with disabilities.

This problem for women with disabilities is by no means exclusive to Eastern Europe and the newer Member States. France is a key example of a Western-European country where women with disabilities show a clear tendency to be more at risk of poverty and social exclusion than men with disabilities. 23% of women with disabilities in France are at risk, which is 4.4 percentage points higher than it is for men.

Does age play a role in the risk of poverty and social exclusion?Figures collected by the EU suggest that younger adults of working age with disabilities face a higher risk of poverty and social exclusion than older people. This is due mainly to the importance of employment income and the protective effect of retirement pensions for each group respectively8. We will explore this further in chapter five.

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What is the situation for people born outside the EU, and ethnic minorities?According to EU data, non-EU citizens residing in the EU are almost twice as likely to be at risk of poverty than the EU-born population. 41.2% of non-EU citizens in the EU are thought to be at risk9. While we do not have EU-level data specifically showing the risk of poverty for persons with disabilities born outside the EU, the indication is that this group is doubly impacted both by way of having a disability and by the extra barriers that come from not being an EU national.

Data collection on ethnicity per se is also lacking at the EU level. What we do know, however, is that persons with disabilities from ethnic minorities face many more difficulties in accessing necessary services. Part of this is due to the fact that many conditions are underdiagnosed in people belonging to ethnic minorities, not least conditions such as autism10. A group that is particularly prone to poverty and social exclusion, and that finds it difficult to access support services, is the Roma community. It is estimated that there are at least 1.6 million Roma with disabilities in the EU and in EU enlargement countries11.

What is the situation for persons with disabilities in rural settings?Living as a person with a disability in a rural setting can increase the risk of poverty and social exclusion. Services, adapted housing and accessible transport can be limited, and opportunities for employment can be scarce. Living in a rural setting can thus limit the earning potential of persons with disabilities, and greatly increase the amount they need to spend to make up for a lack of appropriate services and accessible infrastructure. This is a double-edged sword that can make the risk of poverty all the greater.

What about households containing persons with disabilities? While there is little EU-level data on poverty risks for household that contain a member with a disability, there is research at the national level that strongly suggests that disability does indeed impact the financial stability of households.

Research from the United Kingdom suggests that couples made up of two people without disabilities, and with no children, have a poverty rate of only 8%. When one of the two people in the couple has a disability, however, the poverty rate more than triples to 28%12.

Poverty rates are even higher when one looks at single parent households. Rates for single parent households where no members have a disability stands at 37%. When there is a member of the household with a disability, however, this jumps to 43%13.

This difference appears to be partly explained by the impact that being in a household with a person with disabilities has on employment rates. In British households containing a member with a disability, in only 39% of all cases will all people of working age be in employment, and in 27% of cases nobody at all will have a job. By contrast, in 69% of households containing no persons with disabilities, all adults will be employed, and in only 9% of cases will nobody in the household have a job14.

The reasons behind such figures can be complex. One of the reasons for the increased rate of poverty might well be linked to the additional cost of living for persons with disabilities, in light of insufficient support services and accessible structures. When it comes to the lower rate of working adults in households with persons with disabilities, there are several interpretations. The first is that, in cases where adults of working age themselves have a disability, there are multiple barriers to

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accessing the labour market. This will be explored in greater detail in chapter five. The other is the notion that many parents of children with disabilities are unable to work because of insufficient services for their children. A recent study in the UK claimed that 93% of parents of children with disabilities who don't work say they want to but are stopped by a lack of childcare and flexibility15.

*Insert text box*

Personal Testimony

Victoria. Female aged 28. Has Ehlers-Danlos Syndrome.

From Bristol, UK

My disability had caused me to lose my job. Due to this I am now struggling financially, I was the sole provider for my family and now my husband is having to be my carer as well as care for our son. The disability benefits are so little that we have very little life outside of just surviving, we can’t afford day trips for our son or trips to museums etc. I also have difficulty with travelling and am unable to receive a powered wheelchair meaning my husband has to push me and a buggy which is just impossible so I have basically zero social interaction outside of my home.

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What are the extra costs of living in a society poorly adapted to the needs of persons with disabilities?Here things become a little complicated. While there have been studies into the extra living costs that come from having a disability in the context of a society poorly equipped to cater to disabled needs include persons with disabilities, we do not have much in the way of concrete comparable european figures. What we can discuss, however, are the resounding indications in different pieces of research that the cost of living of persons with disabilities far exceeds that of persons without disabilities.

Studies from Ireland suggest that the extra costs for households containing a member with a disability, in order to reach the same standard of living as households containing no persons with disabilities, are significant. Researchers indicate that having a person with long-term “severe limitations” in a household, costs on average 23.7% of a household’s income. On the basis of mean income in Ireland, this equated to around 101.40€ per week at the time the study was conducted16. When a household member only has “some limitation”, the loss is still estimated at an average of 20.3% household income, or 96.38€ per week17.

Another study from the UK suggests that families with children with disabilities face average extra costs of £581 (659€) per month, and that for almost a quarter of families with children with disabilities (24%), the extra costs amount to over £1,000 (1134€) per month18. The same study from the UK also attempts to quantify the extra costs incurred by persons with disabilities themselves, purely though the fact of having a disability. The study showed that, on average, adults with disabilities face extra costs of £583 (661€) per month. However, this average obscures the fact that one in five adults with disabilities, having higher support needs, face extra costs of over £1,000 (1134€) a month, even after they have received welfare payments designed to meet those costs19.

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*Open text box*

Personal Testimony

Joncour, male, 19 years old. On the autism spectrum

From Rennes, France.

I am a 19-year-old non-verbal autistic person who needs ongoing help. I managed to get my baccalaureate (French high school diploma) and I go to university. However, the MDPH (body that assesses and notifies the rights of people with disabilities in France) has only granted me 3 hours a day of personal assistance. My family has to cover the costs for the remaining support hours (1000 euros per month) so that I can go to class and have a normal life without my parents, like any young person of my age. This impacts our daily life enormously and puts us in a precarious position20.

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Are there Member States where disability-related living costs are higher?Again, there is little in the way of hard figures to help us answer this question. However, Researchers from the University of Linz in Austria and the University of Salamanca in Spain have attempted to shed light on how different countries compare21.

The suggestion by the researchers is that there are indeed certain countries in the EU where much greater costs are incurred by persons with disabilities when trying to make ends meet. Unsurprisingly, countries with a high cost of living in general are also those where we see the highest extra disability-related costs. However, the extra costs are nevertheless indicative of countries where mainstream services and infrastructure, such as transport, housing, education and healthcare, are not sufficiently catered to the needs of persons with disabilities. Below you will see the countries highlighted as being the most costly for persons with disabilities.

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Title : Estimated average additional cost of living for a person with a disability, based on ability to make ends meet (Euros per year)

Create small infographic showing the outline of the shape following countries, with the name of the figure and the accompanying figure next to them

Sweden - 23,012€, Netherlands - 20,681€, Denmark - 20,555€, United Kingdom - 18,438€, Austria - 16,321€, Belgium - 14,550€, Finland - 14,425€22

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Chapter 3 – Disability assessment and national spending on disability

By Guest Author Lillie Heigl

Financial investments in the form of social services made available by the state are an important factor in lowering the poverty rate of persons with disabilities. The availability of social services and

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financial investment made by Member States vary greatly across the EU. In order to understand the differences across EU countries, it is important to not only look at how much countries invest in supporting persons with disabilities, but also how countries evaluate a person’s need for support through disability assessment.

So how much do different countries invest in supporting persons with disabilities?The EU Member States vary in how much importance they give to expenditure of disability. On average in the EU, 7.37% of spending on social benefits goes towards persons with disability. Some countries invest more in the disability community, whereas in other countries the share dedicated to persons with disabilities is far lower. This is most notably the case for Malta and Cyprus.

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Title - Spending on Disability as percentage of total spending on social benefits (2016)23

DKEESEHRLUFI

NLLTLVSKBEDEEUBGPTES

ROPL

UKCZFRATHUGR

ITIESI

CYMT

0 2 4 6 8 10 12 1413.08

11.4210.8810.86

10.769.86

9.389.26

9.068.82

8.618.05

7.377.35

7.237.13

6.926.71

6.626.446.416.356.32

5.895.84

5.365.35

4.23.59

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Personal Testimony

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Loredana. Female with a visual impairment.

Originally from Romania but now living in Leuven, Belgium.

I am a person with very low vision, almost blind. I originally moved from my country of origin, Romania, to Belgium to do a Master’s programme.

To benefit from all services offered to students with disabilities, the first step was to have my disability recognised. I started that procedure in November 2007. Until the full recognition of my disability and the decision of whether or not to give me a Belgian disability allowance, I had to live with 350€ a month, the 200€ I was still able to get from disability benefit in Romania, and 150€ support from my university. It was only in May 2009 that I finally got the answer that I was approved to receive disability support.

Although I eventually got the support I needed, the precarious financial situation I faced while waiting had an effect on my life. All my money had to go to rent, and fortunately my landlady was kind enough to include meals for me at a small extra cost I could just about afford. But I was unable to go out and socialise with other students because I didn’t have any money to buy a drink or a cinema ticket, for example. I also had difficulties to buy clothes, although luckily the parish of my church helped me with this. I was ashamed to ask for help. I didn’t want to feel like I was begging.

Quicker and easier recognition of disability would save people going through such undignified situations.

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How is do different countries conduct disability assessment conducted?The method for assessing disability, granting benefits and providing social protections to citizens with disabilities varies substantially country by country. Disability assessments are crucial in protecting the rights of persons with disabilities. Some of the primary issues with disability assessments are those that focus only on a medical or functional model of disability without consideration of environmental or social barriers facing a person, and the variance of systems of assessment country by country that has created a fractured recognition of disability in the EU.

Methods of Assessing DisabilityIn the Country Reports on Disability Assessment by the Academic Network of European Disability Experts (ANED)24, analysis was done on which methods were used by different EU Member States. Certain countries measured a persons ‘functional capacity’, others used the Barema method to measure ‘percentage loss due to disability’, or one based on a diagnosed medical condition to measure a person’s need for supports. In these same reports, many countries cited these forms of assessment as a weakness that should be addressed. They ANED concludedescribed that holistic exams disability assessment more closely aligns with the CRPD and will aid in its successful implementation.

What do these methods entail? Medical approach: This approach involves procedures relying on medical assessment and does not take account of the ability or needs of the person being assessed.

The Barema method: This method is a type of medical approach that uses a list or table, divided into chapters covering physical or mental components of the body. It gives guidance on medical

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benchmarks against which assessments should be made for each of these components. On this basis, a ‘ percentage of disability’ is declared. For example, the loss of an eye might account for 40% disability, and the amputation of a foot for 30% disability25. The overall ‘percentage of disability’ will be the impairment ratings for all different parts of the body.

Functional: A functional capacity assessment seeks to establish functional limitations. It involves identifying the abilities and inabilities of an individual. The assessment may involve standardised tests which measure performance and the ability of an individual to perform certain activities.

Holistic approach: A holistic assessment combines assessments related to impairment, functional capacity and environmental factors.

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Title: Type of disability assessment per country

insert map graphic with countries colour coded by type of assessment used:

(RED) Barema: Bulgaria, France, Greece, Hungary, Portugal, UK, Luxembourg

(LIGHT PINK) Holistic approach: Cyprus, Estonia, Slovakia, Spain

(BLUE) Medical approach: Germany, Ireland, Latvia, Lithuania, Malta, Slovenia

(YELLOW) Functional: Austria, Belgium26, Czechia, Poland, Romania, Sweden, Denmark (Denmark

(LIGHT GREEN) Other: Finland4, Netherlands5,

(RED AND LIGHT PINK STRIPES) Barema and Holistic approach: Italy27

(BLUE AND YELLOW STRIPES) Medical and functional: Denmark28

(Red and Yellow Stripes) Barema and functional: Croatia29

Put colour code explanation at bottom of the map showing which system each colour corresponds to. There is no need to this for the countries with striped colours, which are simply to show a mix of two different systems.

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Inclusion of Person with Disability in the Assessment Process20 countries, in their reports, described a system of assessment that included either some form of self-assessment by the person with a disability applying or a face-to-face evaluation with the assessor.

4 Finland uses a system of assessment of need (e.g. for help / support).5 The Netherlands uses a mixture of assessment of economic loss (e.g. loss of income related to disability) and assessment of need.

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*insert graphic*Title: Counties where disability assessment includes self-assessment and/or face-to-face evaluation

Insert map graphic with following countries filled in: Austira, Belgium, Bulgaria, Croatia, Cyprus, Czechia, Finland, France, Greece, Hungary, Italy, Latvia, Lithuania, Poland, Portugal, Romania, Slovakia, Slovenia, Sweden, UK

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Inclusion of Disabled Peoples’ Organisations (DPOs) in the Assessment Process10 Countries listed under their “most promising aspect” that DPOs were engaged in the assessment system or assisted in modelling the system or legislation and procedures for assessment.

*insert graphic*Title: Countries involving DPOs in disability assessment system, legislation or procedures

insert map with following countries filled in: Czechia, Hungary, Italy, Latvia, Lithuania, Malta, Romania, Slovakia, Slovenia, UK

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Several countries leave their assessments entirely in the hands of medical professionals or officers of the municipality or state who often lack the nuanced understanding of disability. disability. Assessments that only consider a medical condition or a percent of “incapacity” do not consider the lived experience of the person with a disability or the barriers they encounter on a daily basis.

Centralised source of information about Disability Assessment The system of assessments to be registered as a person with a disability and to receive various benefits is difficult to navigate and that makes it difficult for persons with disabilities to exercise their rights. The system is fragmented within individual countries as a person may have to go through several series of assessments and multiple agencies to receive their benefits.

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Personal Testimony

Sven30, male. On the autism spectrum with an intellectual disability

From Norsjo, Sweden

I have personal assistance around the clock and, thanks to that, can live a good life with self-determination and meaningfulness. Because of harder assessments and claims from the government, I and many others risk losing the vital support that personal assistance is, and then there is no future for me. I have skilled, well-trained assistants who are experts in supporting me in a way that allows me to live the way I want. Should I lose my assistance, I cannot stay in my home, I cannot do my leisure activities or my daily activities. It is frightening to even think about it, because that would mean that I would go under31.

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Inconsistency across the EU for defining disability leading to and the deprivation of the freedom of movement Fragmentation of disability assessment systems is even more dramatic on the EU level as assessments are country-specific and that has led to a fractured understanding of what disability is and who qualifies for social protection and benefits. The EU provides citizens opportunities for mobility and advancement in countries other than their home country. Today, 17 million EU citizens live and work abroad in another EU country. This mobility, however, is extremely limited for persons with disabilities.

The inconsistent types of assessment, qualifications for benefits and administrative processes inherently deprive persons with disabilities of their right enshrined in the EU treaties to freedom of movement (Article 3(2) of the Treaty on European Union (TEU)32 and Articles 4(2)(a), 20, 26 and 45-48 of the Treaty on the Functioning of the European Union (TFEU)33.

While the UNCRPD provides a definition for disability, the assessments of disability are not always in-line with this definition. A person may qualify as “disabled” in one country but when moving to a different country, the new form of assessment could determine they are not disabled. Countries are inconsistent in their definitions of what qualifies as a disability.

There is great variance for the assessment process to be registered as disabled and then to begin receiving social supports. Across EU countries, there are different types of assessments used, different qualifying criteria, different assessment methods, different assessors and different supporting evidence that a person may provide for their assessment.

All of these differences make navigating the assessment process and system difficult in one’s home country and even more difficult to try and move. If a person with a disability were to move to a new country, it would be difficult for them to register again as disabled and to begin receiving their social protection. This in turn means that there would be a period of time where they did not have social protection at all as they could not keep their protection from their last country of residence.

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Personal Testimony

Matthieu. Male, aged 31. Has Cerebral Palsy.

From France

I was studying in the UK (as a French citizen) until I was asked by the British Government authorities to leave due to France having abruptly stopped my financial support. Because of my cerebral palsy and my reliance on personal assistance, I was perceived as unreasonable burden on the host country. I need round-the-clock assistance for eating, washing, physical assistance and enablement.

French law on disability benefits and care support has a very restrictive derogation on allowing students with disabilities to continue receiving their disability benefits whilst studying in another member state. As my case was quite exceptional, because there had never been such a dependent

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person who had the project of continuing his studies abroad at my MDPH (body that assesses and notifies the rights of people with disabilities in France). It was thus dealt with through the emergency channel and everyone was very supportive. That being said, no one informed me of the rules I had to meet, which were a lot harsher than in France.

At the end of 2014, whilst attempting to register at the overseas branch of the social security, my eligibility to continue receiving the benefits was challenged as according to the pensions department, I did not meet the criteria. I was informed by the French Social Security that I had two weeks to pay back 18,000€ of French disability allowance. It was impossible. I told them I could not and that I would suffer real hardship as a result. No one took into account that for years on top of having been transparent throughout the process of having my life project validated by the MDPH, I submitted years of invoices labelled in British pounds in relation to my care. So it seemed at best doubtful, and surprising, that the same institutions which gave me the green light to continue my studies abroad then complained about not having being aware that I left or met the conditions. My refusal to pay more than 18 000€ or to recognise the accusation made against me led to a court battle and to the stopping of all my disability benefits and compensation pending a final answer by the court. As I could no longer pay, the agency providing care assistance to me in the UK withdrew their full service and support. A volunteer was found to support me as an emergency measure, but the agency didn’t check properly who this person was before they started assisting me. I was abused and eventually placed in a home for older people by British social services who had stepped in under their emergency powers.

Since I had been in the UK for more than 5 years, social services suggested I could apply for permanent residency, which would give me the right to receive more appropriate care and a personal budget. My social worker and I were sent a huge, inaccessible form of 120 pages to apply for this. We did the assessment and I was told I was eligible for permanent residence. However, then the decision was reversed as the first determination did not take into account that for two years I had returned to France for the purpose of receiving the physiotherapy denied to me on the NHS, that I so badly needed. In between July 2011 and May 2013, I had returned to receive the physio and, although still studying in the UK, I was doing so only part time, it was thus decided that I had in total spent more time in France that in the UK over that period. My time in the UK had thus been interrupted according to the EU freedom of movement directive, which rendered me ineligible for permanent residency. I was then “invited to voluntarily return to France”.

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Chapter 4 – Extreme poverty and homelessness

It is hard to gage the exact proportion of people experiencing homelessness in the EU who have a disability. The difficulty comes from the fact that there is not enough data on homelessness, or disability.this. In fact, even if there were detailed records of the number of homeless people with disabilities across the EU, the accuracy could be undermined by the fact that a number of persons with disabilities experience homelessness specifically because they have conditions that have gone undiagnosed and have therefore not received the support they need.

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What do we know about homelessness among persons with disabilities? The information we have from studies carried out in various EU countries is that persons with disabilities are largely overrepresented when it comes to homelessness. For example, a study carried out in the Netherlands in 2014 found that 29.5% of homeless people had an intellectual disability34, whereas the prevalence of intellectual disabilities among the population as a whole is around 0.7%35.

Another study from the UK sheds light on the link between homelessness and autism. The study from 2018 observes that 12.3% of homeless people displayed autistic traits in line with diagnostic criteria36. When you compare this to the estimated 1% prevalence rate of autism in the EU37, it becomes clear just how much more at risk people on the autism spectrum are of experiencing homelessness than the general population.

A group that runs a very high risk of experiencing homelessness are people with psychological disabilities. Studies suggest that the prevalence of mental health conditions among people experiencing homelessness is disproportionately high, yet less than one-third of homeless people with mental health problems receive supporttreatment, including medical care38. Not only do mental health issues exacerbate the problems that can lead to homelessness, especially when undiagnosed and when sufficient support is not in place, but the fact of being homeless in itself can also intensify mental health issues. A study conducted in England in 2014 concluded that 80% of homeless people reported having mental health issues, and 45% had actually been diagnosed with a mental health condition39. Furthermore, in the UK as a whole, 26% of homeless people cited mental health problems as a cause of their being homeless (compared with40. The percentage of homeless people who link their situation to mental health issues is believed to be around half this in the rest of the EU41.

Chapter 5 : The legacy of the financial crisis and austerity

Figures in many countries indicate that persons with disabilities were hit hardest by the austerity that followed the financial crisis of 2008. This can be seen by comparing data showing the risk of poverty and social exclusion for each year from 2008 up until 2016, which is the most recent data available from EU sources42.

In many cases, the countries where we see the risk of poverty and social exclusion for persons with disabilities shoot up after 2008, are those hit hardest by the financial crisis. This is the case for Spain, Greece, Cyprus, Ireland and Italy. Surprisingly, however, a number of other countries, who are typically considered to have been less affected by the crisis, also saw the proportion of persons with disabilities at risk of poverty shoot up. This is most notably the case for Sweden, Germany, Luxembourg, the Netherlands, the United Kingdom and Denmark. Below you can see a chart indicating the countries with the highest increase in poverty rates among persons with disabilities since the beginning of the crisis.

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Title: Increase in poverty rates for persons with disabilities since 2008 (in percentage points of people affected)

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Chart showing the following percentage points increase for the following countries:

Sweden - 10.88 percentage points, Spain - 10.06 percentage points, Germany - 8.25 percentage points, Lithuania - 7.88 percentage points, Ireland -7.46 percentage points, Cyprus - 6.56 percentage points, Greece - 6.34 percentage points, Luxembourg - 5.54 percentage points, Netherlands - 5.27 percentage points, UK - 5.21 percentage points, Denmark - 3.59 percentage points, Belgium - 3.06 percentage points, Italy - 3.02 percentage points, Malta - 2.83 percentage points, Finland - 2.4 percentage points

SwedenSpain

Germany

Lithuania

Ireland

Cyprus

Greece

Luxembourg

Netherlands UK

Denmark

BelgiumIta

lyMalta

Finland0

2

4

6

8

10

12

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Here we will take a closer look at a selection of countries where the financial crisis and austerity had a notable impact. These sections have submitted by guest authors from the countries in question.

Greeceby Tania Katsani - The National Confederation of Disabled People Greece (NCDP)

The last decade has been marked by two contradictory moments for persons with disabilities in Greece. On the one hand, there was the ratification of the UNCRPD by the Greek parliament, which has the potential to have a great impact on the lives of persons with disabilities over the next decades -if, of course, it is implemented properly. On the other hand, Greece’s severe economic crisis has had a tremendous impact on peoples’ lives, not least persons with disabilities, who were dealing with poverty and social exclusion, even before the outbreak of the crisis.

The environments in Greek society have been designed to be unfriendly towards persons with disabilities. By "environments" we refer to the way in which our society functions either in the structured environment, the natural, or the digital. As a result, they create obstacles for persons with disabilities by preventing them from exercising and enjoying their rights on equal terms with all other citizens. Therefore, the deprivation and abuse of the rights of persons with disabilities is a timeless common phenomenon. Although the economic cost of living with a disability is generally unbearable, even in periods of economic stability and growth, in times of crisis it becomes even more devastating. The long-lasting crisis has deeply affected the lives of persons with disabilities, chronic diseases and their families on multiple levels. Specifically, their income has seriously decreased because of the austerity-driven policies and cuts both to salaries and pensions, resulting in reductions in disability benefits linked to pensions, such as the severe disability allowance.

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What is more, the reductions of lump sum benefits as well as supplementary pensions have further aggravated the income of persons with disabilities, precipitating their descent into poverty.

A crucial issue is the erosion of public services in critical areas such as of health, welfare, and education, to name but a few, due to cuts to funding.

It is true that welfare benefits have always been at the forefront of the approach by the country's lenders, particularly the International Monetary Fund (IMF). To us, this persistence is unjustifiable, inexorable, unreal, and inhumane. Disability allowance (both-in-cash and in-kind) are the minimum support that the Greek state can offer to persons with disabilities which is one of the most vulnerable groups of the population, let alone in periods where we see extreme events such as the financial crisis.

Another impact of the crisis on persons with disabilities are the negative stereotypes that the former face in their daily lives. For instance, they cannot equally participate in social, professional and/or economic life. Beyond this, the Greek disability movement also had to fight against the issue of ‘disability fraud’ which has been enacted as a ‘threat’ to society and has stigmatised the social group of persons with disabilities. However, the roots of the ‘disability fraud’ should not be traced to persons with disabilities themselves; rather, it has to do with the improper operation of the Greek political system.

To sum up, the ‘crisis’ wasn’t solely an economic and/or a social crisis. Instead, it was and is a crisis that has violated almost all the fundamental human rights.

SwedenBy Mia Ahlgren - Swedish Disability Rights Federation

ContextSweden was once the model welfare state. In 2008 Sweden was the country in Europe with the lowest risk of poverty and social exclusion. Ten years later, the risk for poverty for persons with disabilities has been growing at the fastest rate in the EU. One of the richest countries in the world, ranked the top country for doing business in 2016, has been saving on disability benefits.

Cuts in state budget reducing independent living Higher cost of living and less financial support has been evident since 2008. Decisions in Swedish courts, stricter interpretations by the Social Insurance Agency and government measures to cut budget costs have caused a crisis for many persons and families with disabilities. Since 2014, the number of people covered by state-funded personal assistance decreased by about 1,650. Changes in the interpretation of the law have had an adverse effect on children and families44. When loosing state benefits, the municipalities are responsible for support. In 2017, 12,700 decisions45 granting individual support were not implemented by municipalities. The number has increased since 201346. Fifty percent of women with disabilities aged 16-25 report difficulties in making a living, compared to twenty-five percent for women without disabilities.

Gaps in education, employment and healthLack of support in compulsory schools for pupils with disabilities, especially with intellectual and psychosocial disabilities, has led to a debate about increasingly segregated education. The number of children in compulsory school for children with severe learning disabilities has increased over the last five years, where only 14 percent of teachers have an exam in specific subjects47, due to an exception in the law. Without a job, many young people are trapped living in poverty. After school,

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dependence on support from relatives, or complex systems where it is hard to qualify, continues. The number of children aged 10-17 with experience of mental health issues increased by 100 percent between 2006-2016. For young adults aged 18-24 the increase was 70 percent48.

The overall Impact of being trapped in poverty leading back to institutionsMany people having lost benefits and support, experience difficulties to find out who is accountable and how to claim rights. About 170 000 persons in Sweden are financially dependent on a “guaranty benefit” that is less than half of the minimum wage49, this benefit is related to a person’s assets, so ownership of housing or inheritance would lead to lost benefits. The costs of rent, transportation, rehabilitation, dental care, medicine and other expenses often exceed their income. There are significant divergences based on sex and geographical differences in the level of support provided by municipalities.

In some municipalities “group homes” are being constructed as segregated blocks of apartments. Children on the autism spectrum are forced into residential carehomes (HVB) for children and young people, with reference to The Care of Young Persons (Special Provisions) Act 1990:272 (LVU)50. Lack of community-based care forces people to remain in institutions instead of getting support to live independently.

ItalyLuisa Bosisio Fazzi – Italian Disability Forum

General Information

The Italian welfare system is, still today, based on three pillars: health, social security and assistance51. Unfortunately, the resources allocated are not balanced among these pillars. In fact, public spending is skewed towards social security rather than health and assistance, and towards monetary transfers rather than the provision of services52. The social services supporting persons are mostly delegated to families where women are relegated to roles of carers and assistants53.

According to Eurostat, in 2015 Italy allocated 9.0% of its GDP to healthcare expenditure. In 2017 it was 6.8%. Again, according to Eurostat, in 2015 Italy allocated 29.8% of its GDP to social protection. In 2017 this fell to 20.9%54. Such drastic reductions challenge the implementation of important social measures. Moreover, the gradual reduction of funding for social policies has increased the gap between the North and the South of the country. According to the ISTAT 2016 survey (the Italian Institute of Statistics)55 a person with a disability residing in Northeast Italy benefits, on average, from services and interventions at an annual cost of 5,150 euros, while in Southern Italy it is about 865 euros per capita. The extra costs that persons with disabilities and/or their families have to cover for the social impoverishment they undergo (barriers, obstacles and discriminations) are not taken into account by anti-poverty policies, and support measure for independent living are very limited56.

Employment

Even though legislation exists on the employment of persons with disabilities, there are not sufficient measures in Italy that effectively and specifically promote this. The quota system (law 68/99) is unable to cover all of the people registered as unemployed. Furthermore, the Ministry of Labour’s data does not indicate the overall and relative unemployment rates of persons with disabilities, and these cannot be inferred from the official reporting on the quota law.

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If we compare the number of unemployed persons enrolled in the provincial registers with the number of positions available with the quota system, only 6.1% registered persons could obtain a job. A complementary solution should be to incorporate persons with disabilities into active labour policies in the form of mainstreaming, but unfortunately this does not happen.

Disability and poverty

The economic crisis has produced a strong impoverishment of the Italian population. Persons with disabilities live, to a large extent, without a job, benefit from an extremely modest pension (3,700 euros annually, if they exceed 75% disability), while if they have a hundred percent disability and need accompanying they can get up to 6,180 euros annually, enough to pay for 50 hours of assistance per month or less than two hours a day. Inadequate to ensure a decent standard of living and full autonomyfull autonomy.

There are reductions in taxes for the purchase and adaptation of cars, for some technologies, medical expenses or for the removal of architectural barriers at home, but they do not cover the extra full costs they have to incur.

The anti-poverty measures indicated by the latest Governments have not provided for effective measures to reduce the risk of poverty for persons with disabilities. The provisions, named Social Card (2016) and Inclusion Income (2017), replaced by the new Citizenship Income (2019), treat poor families where a disabled person is present less favorably compared to other families.

Regarding child poverty, the current anti-poverty measures refer to income parameters related to the household and do not take into account the specific aspects concerning children with disabilities, and it takes for granted that resources are evenly distributed within the family. Because in Italy children with disabilities are invisible in statistics (0-5 years), they do not usually benefit from any measures to combat childhood poverty. To date we do not know how the measures against childhood poverty are being assessed, nor the effects of these measures on children with disabilities.

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Personal testimony

Maria Chiara. Female aged 27. Power wheelchair user.

From Senigallia, Italy

Consumer-directed personal assistance is still severely underfunded in Italy. So the only real option for disabled people who are not self-sufficient and who do not have a support network is being relegated to institutions, stripped of fundamental liberties.

My sister and I are both wheelchair users and need 24/7 assistance. The local authorities' funds only cover around one third of our needs. We have access to a "mainstream" and independent life only thanks to the joint financial efforts of our parents and brother. There are poorer regions of Italy where no support at all for Independent Living is put in place.

It is sad and shocking that, due to poor resources put in place, most of my peers with disabilities with a high impact like mine have to make huge sacrifices such as choosing distance learning, since university is not feasible for them as they do not have personal assistants, or not studying at all. So few of them are employed, and often when they are it's their older parents who bring them to work. Many almost don't have the chance to go outside at all.

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United KingdomKamran Mallick - Disability Rights UK

ContextThe social policy priority of post-2008 UK governments has been spending reduction, rather than promoting equality, fairness and equal participation, which has disproportionately hurt disabled people.

BenefitsStricter criteria for disability benefits and inaccurate assessment procedures have left many disabled people without the financial support needed to live independently. People previously given lifetime disability benefits have been reassessed under new criteria and often lose some or all of their support. Stricter criteria have particularly affected people with mental health issues or chronic illnesses. 74% of applicants who appealed a benefit decision won their case in January-March 2019 (the most recent data available), and many claimants do not know how to appeal.

Social careCuts to local government funding have meant many disabled people have had to pay more out-of-pocket for adult social care and have had care hours cut if they cannot contribute enough. Many disabled people are increasingly relying on unpaid care from family or friends, or going without other necessities in order to pay for care. Community-based care remains chronically underfunded and many people with learning disabilities or autism live in hospitals or care homes due to a lack of social care that would allow them to choose where they live.

EducationThe proportion of disabled children attending “special” schools has increased from 2011 onwards, as mainstream schools are unable to provide proper support. Many disabled children are unable to find any school close to their home that can accommodate them and provide a good education.

EmploymentSupport for unemployed disabled people takes an all-stick no-carrot approach, and disabled people deemed not to be trying hard enough to find a job can lose access to benefits. Disabled claimants have been sanctioned because of hospital appointments conflicting with JobCentre appointments (The UK centre for finding employment). Cuts to legal aid and advice service funding has made it difficult for disabled people to file employment discrimination claims.

Overall ImpactResearch commissioned by the Equality and Human Rights Commission into the combined impact of public spending reforms found that households with one or more disabled people saw and will continue to see greater decreases in their income than households without disabled people. Households with multiple disabled people or people with more severe disabilities stand to lose the most – expected to be over 10% of final income by fiscal year 2021/22 in England.

Spain57

Extract from the Special Report by the Disability National Observatory (OED)58

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According to the data obtained by OED, in Spain there are almost one and a half million people with disabilities at risk of poverty, of which more than half a million are in extreme poverty.

Women with disabilities are particularly affected by extreme poverty, with a rate that almost doubles that of the rest of the population and which is 7% higher than that of the menales with disabilities59. The rate of extreme poverty for women with disabilities over 60 years of age is almost twice that of their male counterparts. Regarding type of disability, in Spain women with intellectual disabilities are the group most affected by a lack of income, employment opportunities and access to benefits.

Persons with disabilities in Spain are mostly exposed to the risk of poverty when they are out of work, even when receiving benefits. More than half of the population with a disability of working age are unemployed, and almost half of the population with disabilities who does not work also lacks income from benefits.

In Spain, persons with disabilities live predominantly in households with incomes between € 500 and € 999 a month (this is the case for 34.1% of persons with disabilities). In households without persons with disabilities, however, the most common income bracket is between € 1,000 and € 1,400 per month (this is the case for 23.5% of households not containing persons with disabilities).

Having a member of the household with a disability implies extra costs than those experienced by households with no members with a disability. The main expenses, in the Spanish context, tend to be medical treatment (29%) medicine (28.3%), technical aids (28%), transport and mobility (24.3%) and personal assistance (21.6%).

Another important issue is the link between employmentactivity and poverty among persons with disabilities. It is noted that 14.1% of people the general population in employment are poor, and this figure rises to 17.1% among people with disabilities who are employedhave jobs. In the case of people with disabilities, it is assumed that employment for people with disabilities enjoysoffers higher levels of protection,; however, not even employment protects them from poverty.

Persons with disabilities are under continuous financial pressure to make ends meet. Regarding late payments, whether it be mortgage repayments, rent, loans or other deferred purchases, late payment rates among people with disabilities are almost double those of people without disabilities. Furthermore, 36.1% of all people with disabilities, that is to say more than one in three, experience difficulty or great difficulty in making ends meet on a monthly basis. This is 15% more than the general population. . Among people without disabilities the percentage is 15% less.

It is important to mention gender-based discrimination in the labour market, a phenomenon which is abundantly proven and has a significant impact on poverty. In terms of access, it has been shown that despite closing the gap over the past decade, activity ratesemployment among men are still 22 percentage point higher than those of women (64.7% and 53.2% respectively, a difference of almost 12 percentage points). This fact must be taken into account when linking this reality with disability, an intersection which places women with disabilities in an extremely vulnerable position in the face of poverty.

Chapter 6 – Employment of persons with disabilities

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Data collected by the EU on employment levels give a very clear message. Across the EU, persons with disabilities are far less likely to be employed than persons without disabilities. The extent of the problem at the EU level is significant. On average, only 48.1% of persons with disabilities are in employment, compared to 73.9% among the general population60. It should be noted that persons with disabilities living in institutions are not included in these statistics61, meaning that in reality there is an even higher proportion of persons with disabilities not in employment. Furthermore, the figures do not shed light on the number of people in full-time employment, the quality of the employment, or indeed whether this employment takes place in the open labour market or not.

Unemployment is of course only one of many factors affecting the risk of poverty and social exclusion. Furthermore, having a job is by no means a guarantee of avoiding poverty. Nevertheless, inclusion in the labour market undoubtedly still has a significant role to play in improving outcomes regarding poverty and social exclusion.

Shortcomings of the dataIt should be noted that persons with disabilities living in institutions are not included in these statistics62, meaning that in reality there is an even higher proportion of persons with disabilities not in employment. Furthermore, the figures do not shed light on the number of people in full-time employment, the quality of the employment, or indeed whether this employment takes place in the open labour market or not.

Which countries are particularly affected by poor unemployment rates for persons with disabilities? While the average EU employment rate for persons with disabilities is already very low, in certain EU Member States the situation appears far worse. EU figures show Ireland to be the country with the lowest employment rate of persons with disabilities, at a shocking 26.2%.

Other countries falling far below the EU average are Malta (29%), Croatia (35%), Greece (36.2%) and Poland (37.6%).

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heading “Percentage of persons with disabilities in employment by Member State”

Insert an EU map based on the information below.

Darkest colour 25%-30% (Ireland 26.2%, Malta 29%) Lighter colour 30%-35% (Croatia 35%) Lighter colour 35%-40% (Greece 36.2%, Poland 37.6%, Bulgaria 38.8%) Lighter colour 40%-45% (Spain 40.5%, Belgium 40.5%6, Hungary 41.6%, Romania 43.5%,

Cyprus 43.5%, Czechia 43.9%) Lighter colour 45%-50% (Lithuania 46.4%7, UK 48.9%, Italy 48.9%, Germany 48.9%)

6 National statistic: 26 %. Available at https://statbel.fgov.be/fr/nouvelles/23-des-personnes-avec-un-handicap-ont-un-emploi7 According to the data provided by the Labour Exchange Agency for the date 1 January 2019, in Lithuania only 29% of persons with disabilities of working age were employed.

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Lighter colour 50%-55% (Portugal 50.5%, Slovenia 51.2%, Sweden 52%, Luxembourg 52.2%, Slovakia 52.3%, Netherlands 53.6%, Finland 53.9%)

Lightest colour 55%-60% (Denmark 55.9%, France 56.3%, Austria 56.4%, Estonia 56.8%, Latvia 58.2%)

For each country show the employment rate in percentages.

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Where do we see the biggest gaps between persons with and without disabilities? Again, it is crucial to not only explore the employment rates of persons with disabilities. To understand the real extent of barriers persons with disabilities face when looking for employment, we must look at how much lower the employment rate is for persons with disabilities than for the general population.

There are a number of countries with huge differences between employment rates for persons with disabilities and the national average. The country with the largest difference in percentage points is Ireland, where persons with disabilities are a staggering 45.1 percentage points less likely to be employed than the general population. Other countries that fare poorly are Malta (difference of 42.8 percentage points), Poland (difference of 36.3 percentage points), the UK (difference of 33.5 percentage points), the Czechia republicia (difference of 32.8 percentage points), Hungary (difference of 32.2 percentage points), Belgium (difference of 32 percentage points) and Bulgaria (also with a difference of 32 percentage points).

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heading “Employment gap in percentage points between persons with disabilities and the national average employment rate”

Insert an EU map based on the information below.

Darkest colour 40 pp< (Ireland 45.1pp, Malta 42.8pp) Lighter colour 35pp-40pp (Poland 36.3pp) Lighter colour 30pp-35pp (UK 33.5 pp, Czechia 32.8 pp, Hungary 32.2 pp, Belgium 32 pp,

Bulgaria 32 pp, Germany 31.2 pp, Lithuania 30.8 pp, Sweden 30.6 pp) Lighter colour 25pp-30pp (Romania 29.6 pp, Croatia 28.4 pp, Netherlands 26.7 pp, Spain

25.5pp) Lighter colour 20pp-25pp (Slovakia 24.9 pp, Estonia 24.4 pp, Cyprus 24.1 pp, Denmark 24.1

pp, Portugal 22.7 pp, Greece 21.3 pp) Lightest colour 15pp> (Latvia 19.2 pp, Finland 18.6 pp, Slovenia 18.5 pp, Luxembourg 18 pp,

France 17.9 pp, Austria 17.5 pp, Italy 14.7 pp)63

For each country show gap in percentage points

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What about women with disabilities?Again, women with disabilities fare worse than their male counterparts when it comes to employment. On average in the EU, only 45.9% of women with disabilities are in employment, compared with 50.6% of men.

In some countries, however, the difference in employment rates between men and women with disabilities is far greater. In the Czechiaia republic women with disabilities are 13.4 percentage points less likely to be employed then men with disabilities, in the Netherlands the difference is 11.1 percentage points, in Greece 11.5 percentage points and in Luxembourg 12.3 percentage points. The countries where the difference between the employment rates of men and women with disabilities is the greatest are Italy and Romania. In these two counties, women with disabilities are an astounding 15 percentage points less likely to be employed than men with disabilities.

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Personal Testimony

Luminiţa. Female. Has a learning disability.

From Timişoara, Romania

I was born in a village in Romania, in a family with eight siblings. I spent 18 years of my life in different families and orphanages, and also on the streets of Timişoara and Bucharest.

My life was not easy. I have many bad memories. Memories of hunger, loneliness and exclusion. I have been discriminated against as a woman, as a person with intellectual disabilities, and also as a citizen of Roma ethnicity.

The lack of education has made things worse. I have studied for only two years. In 1999 I found out about a foundation of Timişoara, which helps persons with intellectual disabilities. An assistant at the foundation went to a factory to find a job for me. The employer told them to bring me for an interview. Once I reached that place and employer saw me, he said that he no longer needed a new employee because he had already employed someone else. In reality, he didn’t want to employ persons of Roma ethnicity. The same happened with a fast food chain that we contacted for a position as a cleaning person, and then again with a hotel.

After all these trials I finally managed to find my first job, in a restaurant. I had to work excessively long hours, also during the night and during the weekends. I was not paid the money that I was entitled to and I had no work contract.

After a few months I left that job. But then the foundation found me a new job as a cleaning lady for a block of flats. I still work there. It is a part-time job and I get along very well with the people living in that block of flats.

As persons with disabilities, it is very difficult to find a job. Without any help it is even more difficult. This is my experience of obtaining a job. I hope that, for the next generation of young people with disabilities, things will not be as difficult as they were for me64.

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What do we know about the impact of type of disability on employment rates?Sadly, data at the EU level is not yet disaggregated according to type of disabilityof poor quality, and not systematically disaggregated by disability.. T Tthis makes it difficult to gage accurately how the type of disability or condition impacts employment rates. However, research has been done at the national level to answer this very question. Statistics collected in Spain suggest that the type of disability has a huge impact on employment levels. People with psychological psychosocial disabilities were shown to be the most affected by unemployment, with an estimated employment rate of only 18% in Spain65. Persons with intellectual disabilities are also disproportionately affected by unemployment, with an estimate 19.5% in employment according to the latest figures from 201766.

What are the barriers to employment for persons with disabilities?One of the key issues is discrimination, which starts early in life and it is very clear that the educational system in most of Europe discriminates against children with disabilities of coursein discrimination within the educational system. Persons with disabilities in the EU are shown, on average, to be 11.8 percentage points more likely to be early school leavers than the general population67, and 13.5 percentage points less likely to complete tertiary education68. Access to quality education can be problematic, especially in light of the inaccessibility and lack of support for students with disabilities in many mainstream educational settings, which tend to be those that push students to excel academically, and to go on to university, thus improving employment prospects.

Another issue affecting employment rates is the lack of flexibility in disability benefit entitlement. Often referred to as the “benefit trap”, persons with disabilities often face a risk of losing their safety net when starting work. Contrary to the misconception that the “benefit trap” refers to persons with disabilities preferring the comfort of benefits to working, the real issue at hand is that taking up paid work often results in the irreversible loss of benefits. This means that a person’s wellbeing comes down to their ability to retain their job, and the fact that their condition will not worsen and prevent them from working in the future. It can pose a huge risk for persons with disabilities. Loss of benefits to cover costs of medical devices and other disability-related outgoings, when in paid work, can also lead to a person with a disability in employment being worse off and experiencing a higher risk of poverty.

For people with higher support needs, a significant barrier is the provision of personal assistance and sign language interpreters. In only a handful of Member States do we see entitlement to personal assistance in the workplace, and even here it can be very challenging to be granted an assistant. In other countries, even if personal assistance can sometimes be provided, there are restrictive rules on how much time they can dedicate to assistance in the workplace, such as in France69.

One final issue that we cannot ignore is the insufficient provision of reasonable accommodation for workers with disabilities, but we will discuss this in more detail later in this chapter.

What policies exist in different member states for the employment of persons with disabilities?There are a number of different measures used across the EU Member States to encourage the employment of persons with disabilities. Among these we see most notably quota systems, wage subsidies, tax reductions for companies employing persons with disabilities, assistance for training costs and reasonable accommodation, the provision of personal assistance and the possibility to

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retain certain disability benefits while in work. Below you can see which of these practices exist in different Member States.

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A map of the EU for each of the headings below. When a country is mentioned, the country will be filled in with a colour.

Map 1

Title: Countries with quota systems70

Countries coloured in: Austria, Belgium71, Bulgaria, Croatia, Cyprus72, Czechia, France, Germany73, Greece, Hungary, Ireland74, Italy, Luxembourg, Malta, Poland, Portugal, Romania, Slovakia, Slovenia, Spain

Map 2

Title: Countries offering wage subsidies or financial incentives for employers in the open labour market75

Countries coloured in: Austria, Belgium, Bulgaria, Croatia76, Cyprus77, Czechia, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Latvia78, Lithuania8, Luxembourg, Malta, Netherlands, Poland, Romania, Spain79, Sweden, Slovenia, Slovakia80.

Map 3

Title: Countries offering tax reductions81

Countries coloured in: Austria, Bulgaria82, Croatia, Hungary, Estonia, Italy, Malta, Netherlands83, Portugal84, Romania, Slovakia85, Spain86,

Map 4

Title: Countries assisting in training or reasonable accommodation expenses87

Countries coloured in: Austria, Belgium88, Bulgaria, Croatia, Ireland, Italy, Estonia, Finland, Germany, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Poland, Portugal, Romania89, Slovenia, Sweden, Slovakia

Map 5

Title: Countries where workers can retain disability benefits while in employment90

8 In Lithuania there are different subsidies and incentives for open labour market and social enterprises. Lithuanian disability organisations point this out as being discriminatory as far more subsidies and privileges are given to social enterprises running sheltered workshops. This is also mentioned in CRPD Committee’s Concluding Observations for Lithuania.

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Countries coloured in: Croatia, Malta, Finland91, Greece, Romania, Austria92, Slovakia93, Lithuania

Map 6

Title: Countries with provisions for personal assistance for workers94

Countries coloured in: Denmark, Sweden, Finland, Austria95, Slovakia

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Personal Testimony

Matthieu. Male, aged 31. Has Cerebral Palsy.

From France

Whenever I’ve visited the pôle emploi (French job centre) they look at me as if I’m a colleague of ET in the Spielberg movie. When I tell them of my plans for work, they are excited but don’t know what to do with me. They had never seen people who had done a UN volunteer programme like my personal assistant and me, let alone people who were so severely dependent but able to successfully go through University.

I am very lucky to have my personal assistant Marianne, and I believe that assistants really need recognition for their work. With Marianne I am very fortunate, as we have similar qualifications, so she can assist me in my professional work. But even when it comes to personal assistance in France, paid for using State funds, it is very tricky to get permission for them to accompany you at work. Normally they are only allowed to help you work for 25 minutes per day, and if you work outside home, the journey to and from home counts in these 25 minutes.

Now I do remote working from home, but this has its downsides. You don’t get to meet a lot of people. If the solution for workers with disabilities is to replace human contact by IT, we need to ask ourselves if we are really serious about human rights.

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What policies exist at the EU level for the employment of persons with disabilities?There is an EU Directive, Council Directive 2000/78/EC to be precise, establishing a general framework for equal treatment in employment and education. The Directive underlines that there shall be no direct or indirect discrimination whatsoever on the grounds of disability, age, sexual orientation or religion. It also further clarifies that “indirect discrimination shall be taken to occur where an apparently neutral provision, criterion or practice would put persons having a particular religion or belief, a particular disability, a particular age, or a particular sexual orientation at a particular disadvantage compared with other persons […]”.

Crucially, Article 5 of the Directive also states that reasonable accommodation shall be provided in order to guarantee compliance with the principle of equal treatment in relation to persons with disabilities. The article clarifies this by underlining that “employers shall take appropriate measures,

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where needed in a particular case, to enable a person with a disability to have access to, participate in, or advance in employment, or to undergo training, unless such measures would impose a disproportionate burden on the employer.”

Article 7 on “Positive Action” states that “[w]ith regard to disabled persons, the principle of equal treatment shall be without prejudice to the right of Member States to maintain or adopt provisions on the protection of health and safety at work or to measures aimed at creating or maintaining provisions or facilities for safeguarding or promoting their integration into the working environment.”

As a Directive, these provisions are supposed to have been transposed into national legislation. One of the key issues that remain is that there are as of yet no EU harmonised minimum standards on what we understand by “reasonable accommodation”. It is therefore very hard to measure the adequacy of practices to ensure non-discrimination towards persons with disabilities in the workplace, and to facilitate their ability to do their job.

What do we mean by “reasonable accommodation”?Reasonable accommodation is any change to a job, the work environment, or the way things are usually done that allows a person with a disability to apply for a job, perform in their role, or enjoy equal access to benefits available to other individuals in the workplace.

In its simplest form, this can mean an employer simply being more flexible about their employees’ working hours, schedule or the possibility to work remotely, for example. The same can be said about flexibility regarding recruitment procedures and interview processes. Of course, it also means ensuring that a workplace is physically accessible, takes into account sensory issues, and is and safe for all persons with disabilities.

In other cases, reasonable accommodation can mean providing a person with a disability with assistive devices and technology that enable them to carry out their tasks. The World Health Organisation’s List of Priority Assistive Products defines a number of essential items that could be required depending on the person’s specific needs, among them (although not exclusively): Screen readers for persons who have a visual impairment, screen magnification programmes, refreshable Braille display, Braille writing equipment, hearing aids with Bluetooth connectivity, speech recognition software, special mouse types for people who have difficulty to handle a mainstream mouse, keyboards for one hand or different hand position, video communication devices, video Remote Interpreters, eye-tracking devices for operating a computer, visual fire alarms and adapted doorbells. 96

Finally, reasonable accommodation can come in the form of on the job mentoring and support, and of course personal assistance to workers with higher support needs, including sign language interpreters.

Chapter 7 - EU Commitment to Poverty and Social Exclusion

The EU and its Member States have a number of obligations to tackle the issue of poverty and social exclusion, particularly among persons with disabilities. Here are the main areas in which the EU has expressed commitment to improve the situation, and where we hope to see further efforts and progress going forward.

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The ratification of the UNCRPD Naturally, we need to begin with the United Nations Convention on the Rights of persons with Disabilities (UNCRPD), ratified by the EU and all its Member States. Of particular importance for reducing the risk of poverty and social, in part through employment, are the following articles.

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Article 28 – Adequate standard of living and social protection

1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.

2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures:

a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;

b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;

c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;

d) To ensure access by persons with disabilities to public housing programmes;

e) To ensure equal access by persons with disabilities to retirement benefits and programmes.

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Article 27 – Work and employment

1. States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation, to, inter alia:a) Prohibit discrimination on the basis of disability with regard to all matters concerning all forms of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions;

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b) Protect the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances;

c) Ensure that persons with disabilities are able to exercise their labour and trade union rights on an equal basis with others;

d) Enable persons with disabilities to have effective access to general technical and vocational guidance programmes, placement services and vocational and continuing training;

e) Promote employment opportunities and career advancement for persons with disabilities in the labour market, as well as assistance in finding, obtaining, maintaining and returning to employment;

f) Promote opportunities for self-employment, entrepreneurship, the development of cooperatives and starting one’s own business;

g) Employ persons with disabilities in the public sector;

h) Promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures;

i) Ensure that reasonable accommodation is provided to persons with disabilities in the workplace;

j) Promote the acquisition by persons with disabilities of work experience in the open labour market;

k) Promote vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities.

2. States Parties shall ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour.

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The Treaty on the Functioning of the European UnionIn more general terms, the aim of fighting against social exclusion and ensuring high employment levels and adequate social protection are enshrined in Article 9 of the Treaty on the Functioning of the European Union.

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Article 9 of the Treaty on the Functioning of the European Union

In defining and implementing its policies and activities, the Union shall take into account requirements linked to the promotion of a high level of employment, the guarantee of adequate social protection, the fight against social exclusion, and a high level of education, training and protection of human health.

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European Pillar of Social RightsThe European Pillar of Social Rights was proclaimed by EU leaders in 2017. It is a pillar of 20 principles that the EU and Member States have signed up to in order to give more emphasis to the social dimension of the EU’s work. By signing up to the Pillar of Social Rights, the EU and Member States have agreed to act on these principles. The following principles are particularly relevant to reducing poverty and social exclusion for persons with disabilities.

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1. Education, training and life-long learning Everyone has the right to quality and inclusive education, training and life-long learning in order to maintain and acquire skills that enable them to participate fully in society and manage successfully transitions in the labour market.

3. Equal opportunitiesRegardless of gender, racial or ethnic origin, religion or belief, disability, age or sexual orientation, everyone has the right to equal treatment and opportunities regarding employment, social protection, education, and access to goods and services available to the public. Equal opportunities of under-represented groups shall be fostered.

6. Wages Workers have the right to fair wages that provide for a decent standard of living. Adequate minimum wages shall be ensured, in a way that provide for the satisfaction of the needs of the worker and his / her family in the light of national economic and social conditions, whilst safeguarding access to employment and incentives to seek work. In-work poverty shall be prevented.

All wages shall be set in a transparent and predictable way according to national practices and respecting the autonomy of the social partners.

12. Social protectionRegardless of the type and duration of their employment relationship, workers, and, under comparable conditions, the self-employed, have the right to adequate social protection.

14. Minimum incomeEveryone lacking sufficient resources has the right to adequate minimum income benefits ensuring a life in dignity at all stages of life, and effective access to enabling goods and services. For those who can work, minimum income benefits should be combined with incentives to (re)integrate into the labour market.

17. Inclusion of people with disabilities People with disabilities have the right to income support that ensures living in dignity, services that enable them to participate in the labour market and in society, and a work environment adapted to their needs.

18. Long-term care Everyone has the right to affordable long-term care services of good quality, in particular home-care and community-based services.

19. Housing and assistance for the homeless

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a. Access to social housing or housing assistance of good quality shall be provided for those in need.b. Vulnerable people have the right to appropriate assistance and protection against forced eviction.c. Adequate shelter and services shall be provided to the homeless in order to promote their social inclusion.

20. Access to essential servicesEveryone has the right to access essential services of good quality, including water, sanitation, energy, transport, financial services and digital communications. Support for access to such services shall be available for those in need.

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2030 Agenda for Sustainable Development and the Sustainable Development GoalsThe Sustainable Development Goals, making up Chapter 3 of the United Nations’ 2030 Agenda, consist of 17 goals to end poverty, foster peace, safeguard the rights and dignity of all people, and protect the planet. There are seven references to persons with disabilities in the targets of the SDGs97. They were adopted on the 25 September 2015 and have been signed up to by all EU Member States98. The following goals are particularly significant for persons with disabilities experiencing poverty.

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Goal 1. End poverty in all its forms everywhere

Goal 8. Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all

Goal 10. Reduce inequality within and among countries

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The Europe 2020 StrategyThe Europe 2020 Strategy is the EU's agenda for growth and jobs for the current decade. It is used as a reference point for activities at EU, national and regional levels. EU Member States have set national targets to help achieve the overall goals and report on them as part of their annual national reform programmes99.

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Importantly, the 2020 Strategy contains targets for poverty reduction that the EU has set itself the goal of achieving by 2020. The key targets are the following:

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Poverty, employment and education targets within the Europe 2020 Strategy

75% of people aged 20–64 to be in work rates of early school leavers below 10% at least 40% of people aged 30–34 having completed higher education at least 20 million fewer people in – or at risk of – poverty/social exclusion

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EU Disability Strategy 2010-2020Finally, the EU has adopted a Disability Strategy for the period 2010-2020100. Among the Disability Strategy’s eight “Areas for Action” we see two that are particularly important for reducing the risk of poverty and social exclusion.

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4 — Employment

EU action will support and supplement national efforts to: analyse the labour market situation of people with disabilities; fight those disability benefit cultures and traps that discourage them from entering the labour market; help their integration in the labour market making use of the European Social Fund (ESF); develop active labour market policies; make workplaces more accessible; develop services for job placement, support structures and on-the-job training; promote use of the General Block Exemption Regulation16 which allows the granting of state aid without prior notification to the Commission.

Aim: Enable many more people with disabilities to earn their living on the open labour market.

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6 –Social protection

Lower participation in general education and in the labour market lead to income inequalities and poverty for people with disabilities, as well as to social exclusion and isolation. They need to be able to benefit from social protection systems and poverty reduction programmes, disability-related assistance, public housing programmes and other enabling services, and retirement and benefit programmes. The Commission will pay attention to these issues through the European Platform against Poverty. This will include assessing the adequacy and sustainability of social protection systems and support through the ESF. In full respect of the competence of the Member States, the EU will support national measures to ensure the quality and sustainability of social protection systems for people with disabilities, notably through policy exchange and mutual learning.

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Aim: Promote decent living conditions for people with disabilities

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Conclusion

Poverty and social exclusion are a very real threat to the wellbeing and the enjoyment of human rights of persons with disabilities throughout the EU. What is worrying is not only the rate of poverty, but the fact that persons with disabilities in every single Member State face a far higher risk than those without disabilities.

More than 10 years after the entry into force of the UNCRPD, a Cconvention that aims to remove the barriers, inequality and lack of opportunities faced by many persons with disabilities, these issues are still undeniably present. The percentage of persons with disabilities at risk of poverty and social exclusion in the EU bears testament to the fact that efforts to improve outcomes for the disabled community have not gone far enough.

Shockingly, in many EU countries the situation is becoming gradually worse. We have seen evidence of increasing risks of poverty for persons with disability in a number of Member States over the past 10 years. Even more shocking is that this tendency can also be observed in countries that were not hit significantly by the financial crisis, and where poverty rates are going down among the general population. While this is a worrying sign that political decisions have seemingly been the source of the worsening situation for persons with disabilities, it is also an indication that positive policies can have an impact in reversing the trend.

Of course, one of the key ways to fight poverty and social exclusion is through access to mainstream employment, and the quality inclusive education required to set a person up for the labour market. Here, again, the message is clear. All over Europe persons with disabilities are less likely to be employed, and those who do find a job too often face poor working conditions and a lower salary. While the EU has an Equal Treatment Directive for the workplace, and while Member States use an array ofsome measures to improve prospects, persons with disabilities still fare far less favourably than their non-disabled counterparts in accessing the labour market. A large cause of this seems to be down to insufficient opportunities for quality inclusive education prior to reaching working age. What also appears to hinder the transition to work is the lack of understanding of how to offer reasonable accommodation for an employee with a disability and the inflexibility of disability benefits and financial aids when a person with a disability enters the labour market. The latter is particularly problematic, often putting persons with disabilities at risk of losing their safety net if they lose their job or are no longer able to work, or making them even worse off once they start working, despite evidence that disability benefits are themselves often far below minimum wage.

Finally, it has been shown that disability assessment methods are often ill-adapted to gage the reality of the barriers faced by persons with disabilities, and thus to propose result in appropriate support accordingly. Furthermore, it has been shown that persons with disabilities are being denied their right to freedom of movement throughout the EU. Lack of harmonised disability assessment, the need to be reassessed when moving abroad, and the long delays for being assessed and receiving adequate services, are preventing countless persons with disabilities from enjoying one of the most basic rights enshrined in the EU treaties.

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However, it is not all doom and gloom. This narrative has not been set in stone. We do not need to settle for a situation in which having a disability necessarily increases your likelihood of experiencing poverty and social exclusion. Active pPolicies, legislation, governance and investment to reverse these trends can have a real impact on the reality of the EU’s disabled population. In this vein, the final section of this report presents policy recommendations that EU, national and regional leaders should take into consideration if they are serious about tackling this pressing issue.ensuring no one is left behind in the EU.

Policy Recommendations

Following on from the findings uncovered in this publication, EDF has devised a list of practical policy recommendations. In line with the areas of EU competence, these have been split into two sections. On the one hand you will find recommendations for responses at the EU level, and on the other hand for responses at the national or regional level.

Recommendations for the EU level1) Facilitate the freedom of movement of persons with disabilities and the portability of ser-

vices when moving across borders to live and work: Through an EU Directive harmonising recognition of disability assessment in all Member

States. This should be accompanied by the creation of a standard format of disability certific-ation and agreed standards of recognition that are valid throughout the Union.

Through the creation of an EU-funded accessible online information platform giving persons with disabilities information on the services to contact when moving to different Member States and Regions in order to receive the support they are entitled to and require to live and work.

Through a harmonised EU disability card that would allow people to access disability related support and services without discrimination across the Union.

2) Action on the European Social Pillar’s principles 17 on the inclusion of people with disabil-ities, 4 on Active support to employment, 19 on housing and assistance for the homeless and 20 on access to essential services:

Through binding legislation harmonising requirements across the EU for what employers are obliged to offer, and in turn what support governments must offer their employers, in order to provide reasonable accommodations for workers with disabilities (covering principles 17 and 4).

By acting on Principle 12 of the Pillar of Social Rights by proposing a Directive establishing clear minimum standards for social protection. This Directive should outline a disability be-nefit floor that sets the minimum acceptable level of financial support and service provision for persons with disabilities needed to guarantee a dignified standard of living and wellbeing

3) Replacement and improvement of the European Disability Strategy 2010-2020 with an am-bition European Disability Rights Agenda:

By creating a Strategy, or a “Disability Rights Agenda” for 2020-2030. The future Agenda should outline specific actions to be taken at the EU level to address poverty and social ex-clusion and highlight actions to ensure the mainstreaming of disability in the Pillar of Social Rights and the Sustainable Development Goals.

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By ensuring the implementation of the CRPD and of the Disability Rights Agenda through commitment to an improved inter-institutional governing system, bringing together the Council, the European Parliament and the European Commission in a more frequent and formal way on their work around disability issues.

By placing Disability Focal Points in all Commission Directorate-Generals, Agencies and all other EU institutions, with the focal Disability Focal point being placed in the Commissions Secretariat-General in light of the transversality of disability issues and to ensure their ex-pertise is available to all Commissioners whose duties cover persons with disabilities.

By ensuring that monitoring mechanisms are supported by an allocated budget for this pur-pose, decentralised throughout all Disability Focal Points to ensure joint ownership over monitoring responsibilities.

4) Continuation of the Europe 2020 Strategy on growth and jobs:By creating a follow-up Strategy with specific provisions for poverty and social exclusion, post 2020, taking into account the particular challenges of persons with disabilities. Specific targets should be set in the future strategy on jobs and growth with regards to persons with disabilities, since improvements in general statistics can often hide the huge discrepancies in poverty, employment and wellbeing between persons with disabilities and the general population.

5) Quality data collection on persons with disabilities:By Eurostat collaborating with National Statistics Offices to ensure the collection of disaggregated data (for example by using the Washington Group short-set of questions101). This will allow us to understand the varying level of wellbeing for persons with disabilities not only according to gender and age, but also on type of disability.

6) Intelligent and targeted investment of EU funds: By supporting investment in accessible, community-based services across the EU, favouring

the autonomy of persons with disabilities. By investing in the transition from institutional to community-based care and enforcing the

ban on using EU funds to build or renovate care facilities that are institutional in nature102. By investing in access to inclusive education, and vocational training of persons with disabil-

ities in desirable skills for the labour market, to facilitate access to employment.

7) Clear recommendations during the European Semester Process: Highlighting the importance of the recommendations below for action at the national and regional level, by including them in the Country Reports and Country-Specific Recommendations for Member States showing the worst figures on poverty, social exclusion and unemployment of persons with disabilities.

8) Adoption of a Horizontal Non-Discrimination Directive:Either by working to unblock the current proposed Horizontal Non-Discrimination Directive, currently blocked in the Council, or by beginning to devise a new proposal for a Directive that would break the stalemate.

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Recommendations for the national and regional level1) Disability “benefit trap” Facilitate entry to work by offering flexibility in disability benefits. Prevent the risk of people

losing entitlement to future disability allowance, and a safety net against poverty and social exclusion, once they have entered employment.

Ensure persons with disabilities are not worse off by working, by allowing for the continu-ation of disability allowance used to reimburse the cost of assistive devices, technologies, transport etc, when employed.

Ensure living wages and access to trade unions for workers with disabilities. Facilitate access to sign language interpreters and personal assistants for persons with disab-

ilities requiring this support, and assist employers in covering these costs to encourage the recruitment of persons with disabilities.

2) Disability assessment103

Exams should follow a holistic approach that looks at a combination of impairment, functional, social and environmental considerations. Examples of countries incorporating a holistic assessment include Cyprus, Estonia, Malta, and Slovakia. Assessments of disability must of course consider the impairment and activity limitations but should also consider the attitudinal and environmental barriers faced by persons with disabilities.

The assessments should provide opportunities for the individual with the disability to offer their insights and evaluations of their disability and their support needs, whether that be through a face-to-face meeting with the assessor or via a self-assessment that they complete.

If a country changes its system of assessment to follow a holistic approach, or if the country is reviewing policies and practices for assessment, persons with disabilities and DPOs should be a part of the process.

Citizens would greatly benefit from a centralised source of information about the various disability assessments since they vary by country. Where countries may not be in a position to overhaul their system of assessment to be more integrated, creating a centralised source of information about the administrative and practical aspects of the assessment would make the existing, complex system more navigable to persons with disabilities.

EU countries should work to harmonise their assessments of disability with regards to their administration methods, qualifying criteria and the assessment process in order to protect the freedom of movement of persons with disabilities.

3) Prevention of extreme poverty and homelessness Emphasis should be put on housing-first solutions, investing in housing in the community for

vulnerable people in accordance with their individual needs. Investment should be made in facilitating diagnosis of psycho-social disabilities and follow-

up support to enable people to maintain links with their families, maintain employment, manage administrative tasks linked to housing and living support systems, and to avoid/manage addiction, all of which increases the risks of homelessness and extreme poverty.

Do not try to push persons with disability into employment by reducing disability allowance, using the so-called “incentives to work”. Impetus must be given in the form of support and flexibility, and not by pushing people into poverty as a means of incentivising work.

Ensure training of workers in homeless support services to recognise psychosocial disabilities (people on the autism spectrum, those with mental health issues etc.) to understand how and when to offer support.

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4) Support servicesMoney should be invested in the accessibility of mainstream services for persons with disabilities to minimise the disability-related costs persons with disabilities and their families are required to spend to receive necessary support. This approach is also a way of future-proofing the accessibility of services for an ageing population with ever-growing accessibility needs.

Following on from the findings uncovered in this publication, EDF has devised a list of practical policy recommendations. In line with the areas of EU competence, these have been split into two sections. On the one hand you will find recommendations for responses at the EU level, and on the other hand for responses at the national or regional level.

Recommendations for the EU level[1)] Facilitate the freedom of movement of persons with disabilities and the portability of ser-

vices when moving across borders to live and work: Through an EU Directive harmonising recognition of disability assessment in all Member

States. This should be accompanied by the creation of a standard format of disability certific-ation and agreed standards of recognition that are valid throughout the Union.

Through the creation of an EU-funded accessible online information platform giving persons with disabilities information on the services to contact when moving to different Member States and Regions in order to receive the support they are entitled to and require to live and work.

[2)] Action on the European Social Pillar’s principles 17 on the inclusion of people with disabil-ities, 4 on Active support to employment, 19 on housing and assistance for the homeless and 20 on access to essential services:

Through binding legislation harmonising requirements across the EU for what employers are obliged to offer, and in turn what support governments must offer their employers, in order to provide reasonable accommodations for workers with disabilities (covering principles 17 and 4).

Through a policy proposal to set minimum standards across the EU for the costs of essential services that can be covered by service users themselves (covering principle 20).

[3)] Replacement and improvement of the European Disability Strategy 2010-2020 with an am-bition European Disability Rights Agenda:

By creating a Strategy, or a “Disability Rights Agenda” for 2020-2030. The future Agenda should improve on the one currently in place, not least by linkingoutline specific actions to be taken at the EU level to address poverty and social exclusion objectives to all UNCRPD articles, as well as all disability-specific principles and highlighting actions to ensure the mainstreaming of disability in the in the Pillar of Social Rights and the Sustainable Develop-ment Goals. There should be improved governing system to ensure better collaboration and information sharing between Commission DGs and EU institutions, and monitoring mechan-isms supported by an allocated budget for this purpose.

[4)] Continuation of the Europe 2020 Strategy on growth and jobs:By creating a follow-up Strategy with specific provisions for poverty and social exclusion, post 2020, taking into account the particular challenges of persons with disabilities.

[5)] Quality data collection on persons with disabilities:

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By Eurostat collaborating with National Statistics Offices to ensure the collection of disag-gregated data (for example by using the Washington Group short-set of questions104). This will allow us to understand the varying level of wellbeing for persons with disabilities not only according to gender and age, but also on type of disability.

[6)] Intelligent and targeted investment of EU funds: By supporting investment in accessible, community-based services across the EU, favouring

the autonomy of persons with disabilities. By investing in the transition from institutional to community-based care and enforcing the

ban on using EU funds to build or renovate care facilities that are institutional in nature105.

[7)] Clear recommendations during the European Semester Process:

Highlighting the importance of the recommendations below for action at the national and regional level, by including them in the Country Reports and Country-Specific Recommendations for Member States showing the worst figures on poverty, social exclusion and unemployment of persons with disabilities.

Recommendations for the national and regional level[1)] Disability benefit trap Facilitate entry to work by offering flexibility in disability benefits. Prevent the risk of people

losing entitlement to future disability allowance, and a safety net against poverty and social exclusion, once they have entered employment.

Ensure persons with disabilities are not worse off by working, by allowing for the continu-ation of disability allowance used to reimburse the cost of assistive devices, technologies, transport etc, when employed.

Ensure living wages and access to trade unions for workers with disabilities.

[2)] Disability assessment106

Exams should follow a holistic approach that looks at a combination of impairment, functional, social and environmental considerations. Examples of countries incorporating a holistic assessment include Cyprus, Estonia, Malta, and Slovakia. Assessments of disability must of course consider the impairment and activity limitations but should also consider the attitudinal and environmental barriers faced by persons with disabilities.

The assessments should provide opportunities for the individual with the disability to offer their insights and evaluations of their disability and their support needs, whether that be through a face-to-face meeting with the assessor or via a self-assessment that they complete.

If a country changes its system of assessment to follow a holistic approach, or if the country is reviewing policies and practices for assessment, persons with disabilities and disability groups should be a part of the process.

Citizens would greatly benefit from a centralised source of information about the various disability assessments since they vary by country. Where countries may not be in a position to overhaul their system of assessment to be more integrated, creating a centralised source of information about the administrative and practical aspects of the assessment would make the existing, complex system more navigable to persons with disabilities.

46

EU countries should work to harmonise their assessments of disability with regards to their administration methods, qualifying criteria and the assessment process in order to protect the freedom of movement of persons with disabilities.

[3)] Prevention of extreme poverty and homelessness Investment should be made in facilitating diagnosis of psycho-social disabilities and follow-

up support to enable people to maintain links with their families, maintain employment, manage administrative tasks linked to housing and living support systems, and to avoid/manage addiction, all of which increases the risks of homelessness and extreme poverty.

Do not try to push persons with disability into employment by reducing disability allowance, using the so-called “incentives to work”. Impetus must be given in the form of support and flexibility, and not by pushing people into poverty as a means of incentivising work.

Ensure training of workers in homeless support services to recognise psychosocial disabilities (people on the autism spectrum, those with mental health issues etc.) to understand how and when to offer support.

[4)] Support servicesMoney should be invested in the accessibility of mainstream services for persons with disab-ilities to minimise the disability-related costs persons with disabilities and their families are required to spend to receive necessary support. This approach is also a way of future-proof-ing the accessibility of services for an ageing population with ever-growing accessibility needs.

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1 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20202 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20203 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20204 Including the United Kingdom at the time of creating this report5 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20206 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20207 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu20208 Priestley, M. (2018). Mainstreaming disability equality in the European Semester 2018-19: policy issues and questions Available at: https://www.disability-europe.net/theme/eu2020?country=european-union9 Available at: https://ec.europa.eu/eurostat/web/products-eurostat-news/-/DDN-20190221-1?inheritRedirect=true 10 Begeer, S., Bouk, S.E., Boussaid, W., Terwogt, M.M. and Koot, H.M. (2009). Underdiagnosis and referral bias of autism in ethnic minorities. Available at: https://www.ncbi.nlm.nih.gov/pubmed/18600440 11 Szporluk, M. (2016). Not Even in the Margins: Where are Roma with Disabilities? European centre for Minority Issues. PP 12. Avilable at: https://www.ecmi.de/uploads/tx_lfpubdb/ECMI_Study__8_final.pdf 12 Tinson, A., Aldridge, H., Born, T, B. and Hughes, C. (2016). Disability and poverty: why disability must be at the centre of poverty reduction. New Policy Institute. Available at : https://www.npi.org.uk/files/3414/7087/2429/Disability_and_poverty_MAIN_REPORT_FINAL.pdf13 Tinson, A., Aldridge, H., Born, T, B. and Hughes, C. (2016). Disability and poverty: why disability must be at the centre of poverty reduction. New Policy Institute. Available at : https://www.npi.org.uk/files/3414/7087/2429/Disability_and_poverty_MAIN_REPORT_FINAL.pdf14 (2018). Off Balance: Parents of disabled children and paid work. Working Families. UK. Available at: https://www.workingfamilies.org.uk/wp-content/uploads/2018/07/WF-2018-Off-Balance-pages-FINAL.pdf 15 Study conducted in 200816 Cullinan, J., Gannon, B. and Lyon, S. (2008). Estimating the Extra Cost of Living for People with Disabilities. Health Economics 20, pp 582–59917 John, E., Thomas, G. and Touchet, A. (2019). The Disability Price Tag 2019: Policy Report18 Translated from French by the EDF secretariat19 Antón, J.I., Braña. F.J. and Muñoz de Bustillo, R. (2014). An analysis of the cost of disability across Europe using the standard of living approach. Available at: https://link.springer.com/content/pdf/10.1007%2Fs13209-016-0146-5.pdf20 Antón, J.I., Braña. F.J. and Muñoz de Bustillo, R. (2014). An analysis of the cost of disability across Europe using the standard of living approach. Available at: https://link.springer.com/content/pdf/10.1007%2Fs13209-016-0146-5.pdf21 http://appsso.eurostat.ec.europa.eu/nui/submitViewTableAction.do22 Academic Network of European Disability Experts. Available at: https://www.disability-europe.net/ 23 Examples given from the English Barema system: Available at https://rm.coe.int/16805a2a27 24 https://handicap.belgium.be/fr/reconnaissance-handicap/evaluation-handicap.htm25 Italy uses both Barema and a holistic approach for its two primary disability assessment systems26 Denmark uses a mixture of the medical and functional approach to disability assessment27 Croatia uses a micture of the barema and the functional method of assessment28 Not the person’s real name. The individual has asked to remain anonymous29 Translated from Swedish by the EDF secretariat30 https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A12012M%2FTXT31 https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex:12012E/TXT32 Out of a pool of 387 participants observed33 Van Straaten, B., Schrijvers, C. T. M., Van der Laan, J., Boersma, S.N., Rodenburg, G., Wolf, J.R. and Van de Mheen, D. (2014). Intellectual Disability among Dutch Homeless People: Prevalence and Related Psychosocial Problems. Erasmus medical centre, Rotterdam, Netherlands.

34 Churchard, A. Ryder, M. Greenhill, A. Mandy, W. (2018). The prevalence of autistic traits in a homeless population. SAGE UK.

Available at: https://journals.sagepub.com/doi/pdf/10.1177/136236131876848435 Available at: https://www.autismeurope.org/about-autism/prevalence-rate-of-autism/36Available at: https://www.feantsa.org/download/homeless_in_europe_summer_20138191538203323085145.pdf 37 Homeless Link. (2014). The unhealthy state of homelessness: Health audit results 2014. Available at: homeless.org.uk/sites/default/files/site-attachments/ The%20unhealthy%20state%20of%20homelessness%20 FINAL.pdf38 Beaumont, J. (2011). Housing. London: ONS39 Average based on the other 26 Member States in 2011, thus to the exclusion of Croatia.40 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu202041 The National Board of Health and Welfare report on consequences of judgements related to parts of the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS) (1993:387) and The Social Services Act (2001:453), December 2017 https://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/20773/2017-12-19.pdf

42 The Health and Social Care Inspectorate (IVO), report about decisions that were not executed within 3 months according to the Social Service Act (SoL) and the Law regulating Support and Service to Persons with certain functional disabilities (LSS), 2017 https://www.ivo.se/om-ivo/statistik/ej-verkstallda-beslut/43 The Swedish National Audit Office has started an investigation that should be ready in September 2019, as the number of decisions granting support has increased with 44 percent from 2013 to 2016 https://www.riksrevisionen.se/nu-granskas/pagaende-granskningar/statens-atgarder-nar-rattighetslagar-inte-foljs.html 44 The Swedish National Agency for Education, March 2019 https://www.skolverket.se/om-oss/press/pressmeddelanden/pressmeddelanden/2019-03-12-lararbehorigheten-minskar-i-grundskolan-men-okar-i-gymnasiet45 The National Board of Health and Welfare report December 2017 https://www.socialstyrelsen.se/om-socialstyrelsen/pressrum/press/kraftig-okning-av-psykisk-ohalsa-bland-barn-och-unga-vuxna/ and increasing in May 2019 https://www.socialstyrelsen.se/om-socialstyrelsen/pressrum/debattartiklar/angest-och-depression-okar-bland-vara-unga/46 Swedish Agency for Social Security, information on disability benefit, 2018 https://www.forsakringskassan.se/privatpers/funktionsnedsattning/aktivitetsersattning-och-sjukersattning/ 47 Submission by the Autism and Asperger Association to the National Board of Institutional Care quoting data from public enquiries about children with autism in HVB, 2018 https://medlem.foreningssupport.se/rfa/uploads/nedladningsbara%20filer/SiSskrivelsemars2018.pdf A survey has shown lack of competence about autism of service providers for HVB https://www.autism.se/granskning_hvb 48 Understood as a field of action that helps to define the level of quality of life of citizens and of the nation49 In Italy the total expenditure for pension is 16.5% of GDP and the 26.4% of total population. The majority of pension beneficiaries are old age pension (26.4 total pension of which 19.5% old-age pension, 22% +65 age). https://ec.europa.eu/eurostat/statistics-explained/index.php/Social_protection_statistics_-_pension_expenditure_and_pension_beneficiaries50Available at: http://www.condicio.it/allegati/109/Rapporto2014.pdf51Available at: https://ec.europa.eu/eurostat/cache/infographs/cofog/ 52Available at: https://www.istat.it/it/files/2019/01/Report-spesa-sociale-2016.pdf53Translated from Spanish and summarised by the EDF Secretariat54 Available at: https://www.cermi.es/sites/default/files/docs/novedades/Nota_OED_Especial_Pobreza.pdf 55 note that figures for Spain in Chapter one refer to ‘poverty’ only and not ‘extreme poverty’56 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu202057 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu202058 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu202059 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu202060 Translated from Romanian by EDF61 (2019). Informe 4 del Observatorio sobre Discapacidad y Mercado de Trabajo de la Fundación ONCE. Available at: http://odismet.es/es/informes/62 (2019). Informe 4 del Observatorio sobre Discapacidad y Mercado de Trabajo de la Fundación ONCE. Available at: http://odismet.es/es/informes/63 Based on respondents aged 18-29. EU SILC 2016. Available at: https://www.disability-europe.net/dotcom 64 Based on respondents aged 30-39. EU SILC 2016. Available at: https://www.disability-europe.net/dotcom65 See testimony by Matthieu later in this chapter66 https://www.missoc.org/missoc-database/comparative-tables/results/ 67 in some federal departments68 in the public sector69 in enterprises70 in the public sector71 https://www.missoc.org/missoc-database/comparative-tables/results/ 72 cash incentives73 During the first 24 months of employment74 In Latvia wage subsidies can only be received at certain times and a small number of people for a fixed period.75 Cash subsidies76 only for enterprises made up of at least 25% persons with disabilities77 https://www.missoc.org/missoc-database/comparative-tables/results/ 78 In social security payments79 In social security payments80 In social security payments81 In social security payments82 In social security payments83 https://www.missoc.org/missoc-database/comparative-tables/results/

84http://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=fr&la=F&cn=2007071914&table_name=loi http://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=fr&la=F&table_name=loi&cn=201902110985 corporate income tax relief for amounts spent on this86 https://www.missoc.org/missoc-database/comparative-tables/results/ 87 up to 737.45 euro/month88 Partially89 disability pension and contribution for personal assistance are retained without any limitation depending on income or employment90 https://www.missoc.org/missoc-database/comparative-tables/results/ 91 WHO, the Gate Initiative (2016). Priority Assistive Products List. Available at: http://apps.who.int/medicinedocs/documents/s22396en/s22396en.pdf 92 Available at : http://www.edf-feph.org/sites/default/files/edf_-_sdgs_human_rights_report_final_accessible_0.pdf 93 Available at : https://sustainabledevelopment.un.org/memberstates 94 A written plan for reforms Member States submit to the Commission as part of the European Semester process.95 Available at : https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2010:0636:FIN:en:PDF 96 Available at: http://www.washingtongroup-disability.com/washington-group-question-sets/short-set-of-disability-questions/ 97 Devised by guest author Lillie Heigl98 The European Expert Group on the Transition from institutional to Community-based Care defines an institution, in its guidelines, as a facility where “residents are isolated from the broader community and/or compelled to live together; residents do not have sufficient control over their lives and over decisions which affect them, and the requirements of the organisation itself tend to take precedence over the residents’ individual needs99 Devised by guest author Lillie Heigl100 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu2020101 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu2020102 Including the United Kingdom at the time of creating this report103 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu2020104 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu2020105 EU SILC 2016. Available at: https://www.disability-europe.net/theme/eu2020106 Priestley, M. (2018). Mainstreaming disability equality in the European Semester 2018-19: policy issues and questions Available at: https://www.disability-europe.net/theme/eu2020?country=european-union