DRD Newsletter June 2022

1. Save the date: COSP side event

15th Conference of States Parties to the Convention on the Rights of Persons with Disabilities
SIDE EVENT: Resisting calls to invest in institutions – a discussion with funders, policy makers and DPOs

Date: 14 June 2022 @ 15:00 to 16:15 EST/21:00 – 22:15 CEST

Registration: https://us02web.zoom.us/.../reg.../WN_tCBnWBj0SymUDhjAiVRwhg

Accessibility: International Sign Language interpretation and closed captioning will be provided

According to the information available to European Network on Independent Living - ENIL, refugees from Ukraine are being placed in institutions across Europe, due to the lack of accessible housing. Disability Rights International has recently exposed the practice of children being dumped and abandoned in Ukraine's institutions. With Ukraine and European Union countries calling for more investment in institutions, the question arises - how can we prevent this? 

This side event is organised by ENIL, in cooperation with Disability Rights Defendersa. It will address the issue of increasing segregation of persons with disabilities in institutions as a result of the war in Ukraine, despite lessons learned during COVID. It will focus on the role of the funders in the humanitarian response and the post-war recovery, urging for full compliance with the UN CRPD and ensuring that no funding goes towards institutionalisation of persons with disabilities.


21:00 – 21:10 Welcome and introduction (Jamie Bolling, European Network on Independent Living)

21:10 – 21:45

  • Dragana Ciric Milovanovic, Director for Europe, Disability Rights International - “Children from Ukraine’s institutions – are bilateral agreements between governments a threat to DI process in Europe? ” (5 mins)
  • Lukasz Orylski, disability rights campaigner, Poland – “How the arrival of disabled refugees in Poland has led to calls for further investment in institutions ” (5 mins)
  • Jamie Bolling, Disability Rights Defenders – “Lessons learned from Sweden’s deinstitutionalization process” (5 mins)
  • Baroness Jane Campbell of Surbiton DBE, Member of the House of Lords and disability rights Campaigner, United Kingdom (represented by Zeynab Al-Khero, PA and Parliamentary Researcher to Baroness Campbell) - “The reception of disabled refuges in the United Kingdom and the role of it can play in promoting independent living world-wide” (5 mins)
  • Katrin Langensiepen, MEP – “The role of the European Parliament in promoting CRPD compliance, including in times of war and other emergencies” (5 mins)
  • Amalia Gamio, Vice-Chair of the Committee on the Rights of Persons with Disabilities and member of the Working Group on Deinstitutionalisation: “Draft Guidelines on Deinstitutionalization, including in Emergencies and their role in preventing investments in institutions” (5 mins)

21:45 – 22:15 Moderated discussion and closure of the meeting (Chair: Ines Bulic Cojocariu, European Network on Independent Living)

For more information, please visit: https://enil.eu/event/resisting-calls-to-invest-in-institutions-a-discussion-with-funders-policy-makers-and-dpos/

2. What is COSP

What is the COSP? Council of State Parties which are organized for the various UN conventions to support State parties and signatories in the implementation of the conventions. The council of State Parties is the main policymaking body within the UN for the conventions.

This June will be the 15th session for the COSP of the CRPD. The Fifteenth Session, will take place on the 14 to 16  June 2022, United Nations Headquarters in New York, during which the election for nine members of the Committee on the Rights of Persons with disabilities will take place. 

The COSP for the CRPD has been held since the adoption the Convention on the Rights of Persons with Disabilities (CRPD) by the General Assembly as per its resolution 61/106 of 13 December 2006. The CRPD came into force on 3 May 2008 upon its 20th ratification. In the article 40 of the Convention it is stipulatee that “The States Parties shall meet regularly in a Conference of States Parties (COSP) in order to consider any matter with regard to the implementation of the present Convention.”

Since 2008 there has been a yearly session of the Conference of States Parties meeting at the United Nations Headquarters in New York. Here is a list of the previous sessions: 

Fourteenth Session, 15-17 June 2021
Thirteenth Session, 30 November 2020, 1 and 3 December 2020 
Twelfth Session, 11-13 June 2019 
Eleventh Session, 12-14 June 2018
Tenth Session, 13 – 15 June 2017
Ninth Session, 14-16 June 2016
Eighth Session, 9 to 11 June 2015
Seventh session, 10 to 12 June 2014
Sixth session, 17 to 19 July 2013
Fifth session, 12 to 14 September 2012
Fourth session, 7 to 9 September 2011
Third session, 1 to 3 September 2010
Second session, 2 to 4 September 2009
First session, 31 October and 3 November 2008

3. EU Mass Directive and what it means for disabled Ukrainians

Disabled Ukrainians face legal uncertainty in access to disability support services

Current EU legislation provides adequate protection to Ukrainians displaced by war. Though the rules in force make no reference to disabled people, thereby leaving it to member states to decide on access to disability support. On 24 February 2022 the Russian army commenced its invasion of Ukraine. As of 1 March, more than 650.000 displaced Ukrainians had arrived in the European Union. The United Nations High Commissioner for Refugees estimated that up to 4 million people might flee Ukraine, thereby becoming refugees. On 4 March the Council of the European Union established that a mass influx of displaced persons having to flee armed conflict in Ukraine was occurring and passed implementing decision 2022/382/EC. Thereby Council Directive 2001/55/EC providing immediate and temporary protection to all Ukrainians fleeing the war onto Union territory, entered into force. As of 29 May 5,8 million Ukrainians displaced by the war had entered the EU. All those deciding to remain in the Union potentially receive protection under directive 2001/55/EC, the temporary protection directive. What does this entail? 

Most importantly, refugees receive the right to access EU territory. Ukrainians granted protection can reside in an EU member state of their choosing for the duration of one year. In addition, they are free to travel to other EU countries for a duration of 90 days within a 180-day period. If the war should continue beyond the one-year period, temporary protection can be renewed for six months twice. Should the war continue beyond 2024, temporary protection will be extended further, the Council of the EU announced. Second, refugees are granted full access to the labour market so they can engage in employment or self-employment. Member state laws on renumeration apply. Third, Ukrainians under protection receive access to a broad range of services. They must be granted coverage under social security systems, health care and social welfare. Refugees receive full access to all branches of the education system. Hosting countries must ensure adequate housing. According to estimates, 10% of Ukrainian refugees have a disability. Given the legal acquis quoted before, disabled refugees from Ukraine should have access to the same range of rights and services as non-disabled people. Do they also have access to disability specific support services like personal assistance or assistive devices? 

Given the current legislation this is not clear. Directive 2013/33/EU, laying down standards for the reception of applicants for international protection, contains extensive paragraphs on “persons with special reception needs”. According to NGOs providing support to disabled refugees, these rules entail disabled people and provide access to accessible accommodation, assistive devices and adequate health care. Since disabled people are not directly mentioned in the directive it is not clear whether member states would grant disabled refugees access to disability support services based on the legislation. 

In any case, article 3 (3) states directive 2013/33/EC does not take effect, when directive 2001/55/EC, the temporary protection directive, is being applied. The temporary protection directive too makes a reference to “persons who have special needs”. Hosting states are obliged to provide necessary assistance. Who counts as a person with special needs? Again, the legal text does not mention disabled people. Unaccompanied minors and persons who have undergone torture are referred to as people with special needs. 

The temporary protection directive provides good reception conditions to Ukrainians displaced by the war. In Germany, for example, since 1 June due to the EU directive refugees have access to the country´s minimum income scheme. Thus, they will receive considerable higher cash benefits than asylum seekers. Access to the country´s child benefit scheme that is provided to the entire population was granted too. Ukrainians arriving in Belgium are receiving access to healthcare, education and employment on an equal level with the rest of the inhabitants. Many have already found work. Given the current EU legislation, it is unclear whether member states will grant disabled Ukrainians access to disability support. The temporary protection directive and the Council´s implementing decision create no direct obligation for hosting countries. 

However, EU legislation on the protection of Ukrainians only provides minimum standards. While not obliging hosting states, regulations also do not constitute an obstacle to provide access to disability support. The Council decision clearly states that if the “Member State has a national scheme that is more favourable than the arrangements set out in Directive 2001/55/EC, the Member State should be able to continue applying it, since that Directive provides that Member States may adopt or retain more favourable conditions for persons covered by temporary protection.”

Thus, member state´s protection schemes for Ukrainians might very well entail access to disability support. From an independent living perspective, it is clear that hosting countries should use their legal leeway to do just that. Detailing to which extent this is happening would be the topic of more extensive research. Should member states fail to provide access to disability support, the question whether stricter EU protection regulations for refugees, explicitly providing for disability, are needed, must be discussed. 

Brussels, 2 June 2022
Florian Sanden
ENIL Policy Coordinator 

4. Save the date: Swedish workshop on the deinstitutionalisation guidelines

Independent Living Institute (ILI) conducts a Swedish consultation on the draft guidelines for deinstitutionalisation

ILI has circulated information on the draft guideline process to collect comments. If you read this and would want to send comments please do so and send them to me by the 20th of June and the reference to the organization that is participating! Thank you! jamie.bolling@independentliving.org 

More information can be found in the following article and in the link: https://www.ohchr.org/en/calls-for-input/calls-input/call-submissions-draft-guidelines-deinstitutionalization-including

 5. Guidelines for consultation on deinstitutionalisation

DRD spreads information on the draft guidelines process on DI: Draft Guidelines on Deinstitutionalization, including in emergencies
English | Unofficial French | Unofficial Spanish

The Committee invites all relevant stakeholders, including States parties, right-holders under the Convention, principally persons with disabilities through their representative organizations, other civil society organizations, independent monitoring mechanisms, national human rights institutions, and Human Rights Treaty Bodies and Special Procedures mandate holders, to provide written submissions on the draft Guidelines on Deinstitutionalization, including in emergencies by 30 June2022.

These Guidelines will complement the Committee’s General Comment No. 5 (2017) on article 19 on the right to live independently and be included in the community, and its Guidelines under article 14 on the right to liberty and security of persons with disabilities. They will provide guidance to parties to the Convention, civil society organizations and other stakeholders to support their efforts to implement the right of persons with disabilities to live independently and be included in the community.

  • These Guidelines draw on the experiences of persons with disabilities before and during the pandemic, which reported the widespread prevalence of institutionalization of persons with disabilities; the harmful impact of institutionalization on the well-being of persons; and the violence, neglect, abuse, ill-treatment and torture, including chemical, mechanical, and physical restraints, experienced by persons with disabilities in institutions. The pandemic has exacerbated these phenomena, while human rights oversight systems and independent monitoring were limited or suspended.

  • The process of preparing the Guidelines began in late 2020 and result from a participatory process, which included seven regional consultations organized by the Committee in 2021 for Africa; Asia Pacific; Caribbean and North America; Central and South America; Eastern Europe and Central Asia; European Union, other Western European States and other States; and Middle-East and North Africa. In these consultations, supported by the Global Coalition on Deinstitutionalization, more than 500 women with disabilities, children with disabilities, survivors of institutionalization, persons with albinism, grassroots and self-advocacy organizations, other civil society organizations presented testimonies, experiences, and proposals. In September 2021, the Committee on the Rights of Persons with Disabilities adopted an annotated outline of its Guidelines on Deinstitutionalization.  

Formal requirements for submissions

  • Written submissions are welcome in English, French and Spanish, working languages of the CRPD Committee.
  • Written submissions should not go beyond 2000 words, excluding executive summary and footnotes.
  • Submissions must identify the paragraphs of the draft guidelines on de-institutionalization under comment and indicate suggested changes. General observations and those related to the document structure are also possible; however, stakeholders are encouraged to make specific comments to paragraphs of the draft Guidelines.
  • When relevant or possible, support sources for comments are welcome, including in footnotes and direct links.

Written submissions should be sent to jorge.araya@un.org; carlajeanette.villarreallopez@un.org.

Link with information: https://www.ohchr.org/en/calls-for-input/calls-input/call-submissions-draft-guidelines-deinstitutionalization-including

 6. ENIL: Care vs. Personal Assistance

Comparison between personal assistance and home care work

Personal assistance (PA) is a key prerequisite for Independent Living. Therefore, it is essential that policy makers, as well as training and commissioning officers, have a clear understanding of the different elements that constitute PA. In the past, ENIL has developed and promoted a general definition of PA, but sometimes, a more detailed understanding is needed. One way to explore PA in more detail is to compare it to home care work (CW). ENIL recently partnered with researchers and activists from the Independent Living Institute, the Scottish Independent Living Coalition, and the University of Dundee to develop such a comparison. In the resulting document, a PA arrangement of a kind supported by the Independent Living paradigm is compared to traditional CW of a kind usually provided by care agencies to people within their homes. The main differences between PA and CW can be shown on a continuum of choice and control, with PA providing the maximum choice and control, and CW the least. We did not consider care work within residential institutions and day care centres – it shares some of the features of home care work, while being even more restrictive of choice and control due to the institutional context of its provision. Sometimes, PA incorporates specific elements of CW, which makes it less enabling of choice and control. There are also cases in which CW incorporates elements of PA, which makes it more enabling of choice and control. When PA approximates CW, the Independent Living paradigm of support is undermined. There are also instances when a typical CW arrangement is misrepresented as PA, which constitutes a misappropriation of the Independent Living paradigm and terminology.
You will find the document with the comparison between PA and CW here.

7. The Freedom to decide with whom, where and how to live - Deinstitutionalization in Sweden

This paper was written by: Riitta Leena Karlsson and Jamie Bolling from the Independent Living Institute in May 2022. 

The text in English is awaited in next weeks. The link for the paper in Swedish: https://www.independentliving.org/files/AvinstitutionaliseringSverige.pdf?_gl=1*nbjgxr*_ga*MTczOTE1Nzk4Mi4xNjUzOTk5MTM1*_ga_Z0HMZN0SBK*MTY1NDI1Mjg1Mi4zLjEuMTY1NDI1Mjg1Ni4w 

It describes how twenty years have gone since Sweden closed the larger institutions due to breaches of human rights. Now Sweden is in a period when people are losing support due to cuts. Parents are not being granted support or little support for children with disabilities. Both these result in people being directed to institutions or having the threat of not being able to continue to live at home; smaller institutions or what are called group homes but none the less intuitions as per the definition of the CRPD. This paper describes the political decision behind the process for the closing of the larger institutions and what social services were needed to make it happen. The paper brings light to the work of the Independent Living movement for personal assistance which was one of the key services needed to close the institutions in Sweden. In the paper’s foreword the formal Social Minister Bengt Westerberg, who pushed and succeeded in getting the right to personal assistance and other important social services in the LSS legislation of 1994 passed, says that the paper describes what is needed for people with disabilities to live lives as others.

 8. Annika's daughter forced to move to group housing - "An abuse"

Here is an article from AssistanceKoll https://assistanskoll.se/20220214-Tvingas-flytta-till-gruppboende.html citing a Swedish journal from the month of March 2022 showing the new trend of reducing personal assistance hours so that people can no longer live in their own homes with personal assistance but are forced to move to smaller institutions. This is a breach against the right to personal assistance as per Article 19 of the CRPD. 

After living in her own apartment with personal assistance for 15 years, Hanna Grahn in Jönköping is forced to move into a group home. Something that her relatives are upset about. When the municipality of Jönköping reconsidered Hanna Gahn's right to personal assistance, they came to the conclusion that help every waking hour a day was not necessary, but instead 1 hour and 29 minutes per week is enough, which is 15 minutes per day. This means that she has to move into a group home.
- Her possibility to work would disappear and her opportunity to decide for herself what she should do during the day. According to both a psychologist and a doctor, this would affect her mental health in a very serious way, says her mother Annika Renöfält-Grahn.

"Is an abuse"
Hanna has a CP injury that affects her mental and physical capacity. She has difficulty communicating and often needs the help of personal assistants to understand and make herself understood. But that need was completely removed in the municipality's latest assessment of her. Hanna has lived in her own apartment for the past 15 years, but is now forced to move to a group home. There will be the opportunity for one own activity during the week. Right now she is standing in line and waiting for a place in the home so she can keep her personal assistance until she is to move.
- That they now go back to forcing people into a form of housing that they themselves have not chosen, I think is an abuse, says Annika Renöfält-Grahn. She adds that group housing is suitable for many people who have made that choice themselves or with the help of relatives.

The head of department responds to the criticism
Anna Bunninger, function manager in Jönköping municipality cannot comment on the individual case, but responds to the criticism in general:
Jönköping Municipality and disability care always intend to provide a dignified treatment, offer needs-adapted interventions and provide professional support. However, there is no possibility to go beyond the laws and practices that exist within the legislation that governs the business. We have to abide by that. If you as a citizen judge that a decision is incorrect, we always urge the person to appeal the decision and have the matter tried, we are humble because the interpretation is in some cases narrow. The court then helps to interpret the individual's right regarding the social service in question.

 9. Battle for future personal assistance in Norway

Read the following article on personal assistance in Norway first published in Norwegian and Swedish on the Assistanskoll.se

Battle for future personal assistance in Norway

Uloba and Norwegian disabled people are now in a decisive battle for future assistance.

The Norwegian assistance scheme in 2021 is not working properly. We now have a chance to change that. Compared with both the mandate from the Norwegian government on BPA (Citizen-led personal assistance) and how disabled people themselves developed the scheme in Norway, today's Citizen-led personal assistance is far from the equality tool we disabled people need. With the establishment of rights in 2015, BPA was authorized in the Norwegian health legislation, and the administrative responsibility was given to the individual municipality. Thus, the idea that the scheme should contribute to equality and self-determination in our lives, has disappeared more and more.

BPA refugees

The result is that far too few get BPA granted in their municipality, and those who do, often get too few hours. Disabled people become BPA refugees when we have to move to other municipalities to get the assistance we need. Instead of one holistic scheme that can be used throughout life, we now have a multitude of different bodies and schemes that do not talk to each other, and which make it difficult for us to make everyday life coherent. We therefore need a BPA scheme based on our human rights, as enshrined in the UN Convention on the Rights of Persons with Disabilities (CRPD). A scheme that does not have an age and hour limit on BPA, for example as we see it today: You must have a need of more than 25 or 32 hours in some municipalities, in order to be granted a decision.

One life - one order

We also need a scheme we can use throughout life, such as children, youth, students, adults and the elderly. In leisure time, in education, work life and family life. Where it is not the municipality that decides whether you get BPA, or interferes with who should be your assistants and what competence they must have. We need a system that gives us real responsibility for our own lives. We have communicated this to the politicians in several sitting governments.
In December 2021, therefore, a government-appointed committee submitted a public report, a NOU, on the BPA scheme in Norway. The committee is called the BPA committee and consisted of 13 people including the committee leader. The report should contain a proposal for how BPA must be managed in the future in order to become a scheme that ensures equality and a normal life for us disabled people with assistance needs.
But the committee did not come to an agreement after two years of investigative work. The majority did not support what was eventually described as the committee's NOU and proposal for BPA. This proposal would provide a scheme that would still be in the municipal administration and which would still be in the health legislation. The framework would be somewhat expanded, but to a large extent we disabled people would have the same lack of real freedom of choice, human rights and self-determination as before.

This spring's most important match

Therefore, four disabled people in the committee, our representatives in a committee that was to study one of our most important tools for living a normal, equal life, made a separate proposal for a new, separate law on BPA. We need a separate law on BPA that secures the foundation we need and that does not give power over our lives to the so-called aid apparatus and the health professions. In Norway, both bills for the NOU are now up for consultation, and we are entering the most important battle for BPA probably in several decades. We must show, for the disabled, for politicians and for the general public, that our proposal is what will give us the BPA we need.

The government committed to the CRPD

In parallel with this, we are also putting pressure on the Norwegian government to finally incorporate the UN Convention on the Rights of Persons with Disabilities, CRPD, into Norwegian legislation. In February, we handed over 27,000 signatures to the Norwegian Minister of Culture and Gender Equality to incorporate CRPD into Norwegian law. We have built our BPA on the foundation of human rights, and therefore keep up the pressure on both of these issues.

Vibeke Marøy Melstrøm 2022-05-26


Do you think we deserve a separate BPA law in Norway? We will soon be very grateful for your signature on the appeal: Det handler om å leve – Uloba – Signer Oppropet Bedre BPA nå

10. Won Finnish case against discrimination of disabled people and the liberty

Thanks to the Independent Living  lawyer and activist in Finland - Jukka  Kumpuvuori and his work (and the victim's persistence) a great judgment by the UN CRPD committee against Finland to provide personal assistance has been received!
Subject matter: Personal assistance
Procedural issues: Exhaustion of domestic remedies; lack of substantiation
Substantive issues: Discrimination on the grounds of disability; right to liberty; living independently and being included in the community.

Conclusion and recommendations 

The Committee, acting under article 5 of the Optional Protocol, is of the view that the State party has failed to fulfil its obligations under article 19 and article 5 (1) and (2), read alone and in conjunction with article 19 of the Convention. 

The Committee therefore makes the following recommendations to the State party:
(a) Concerning the author, the State party is under an obligation to: 

      (i) Provide him with an effective remedy, including by reconsidering his application for personal assistance to ensure that he can exercise his right to live independently, in light of the Committee’s Views; 

      (ii) Provide adequate compensation to the author for the costs incurred in filing this communication; 

     (iii) Publish the present Views and circulate them widely in accessible formats so that they are available to all sectors of the population. 

(b) In general, the State party is under an obligation to take measures to prevent similar violations in the future, including by ensuring that its legislation on personal assistance and the manner in which it is applied by administrative institutions and domestic courts is consistent with the State party’s obligations to ensure that legislation does not have the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise of any right for persons with intellectual disabilities on an equal basis with persons with other types of disabilities when seeking to access personal assistance; 

(c) In particular, the Committee recommends the State party to amend the Disability Services Act to ensure that the resource-criteria requirement based on the beneficiary’s “ability” to determine the content and modalities of the required assistance is not an obstacle to the independent living of persons who require support in decision-making. 

In accordance with article 5 of the Optional Protocol and rule 75 of the Committee’s rules of procedure, the State party should submit to the Committee, within six months, a written response, including information on any action taken in the light of the present Views and recommendations of the Committee.

Please read the decision here.


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This Newsletter is supported by the Bente Skansgårds Independent Living Fund.