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VVI Pre-Budget Submission

28 AUG 2021

1. DPOs to be Funded

In line with the UN Convention on the Rights of People with Disabilities (e.g., General Comment 7, paras. 61, 62), the State is required to ring-fence core funding for Disabled Persons Organisations (also known as “Representative Organizations”), as well as providing project-related funding.

Note, DPOs are not disability service providers (DSPs) or advocacy organisations run for disabled people. In short, they are not the traditional brand-names of the “disability sector”.

2. Increase in Blind Persons Pension and Disability Allowance

According to the 2016 Census, at least 75% of those with a severe visual impairment in the relevant age-brackets are not in paid employment. Whereas Welfare payments are generally kept low as an incentive for the recipients to seek paid employment, the institutionalised and practical barriers are clearly too high for visually impaired people for this approach to be justifiable, generally, in their case. As equal Irish citizens, they deserve dignity of life and equal opportunity.

To mitigate against the current institutionalised disabling of people from their institutionalised unemployment and impoverishment, at the very least, the Blind Persons Pension and Disability Allowance need to be increased to meet the increased cost of living brought about by the disabling and impairments of their recipients.

For budgets to come, we would advise that universal basic income be considered for all people with a severe visual impairment for as long as the unemployment rates are so high (i.e., for as long as there is clear institutionalised biases and practical issues with blind and partially sighted people being employed).

Similarly, Blind Welfare Allowance would reflect the extra costs of living of independent visually impaired people, and be increased accordingly (cf. SVPJ report, 2017) which found that the extra costs due to visual impairment were around €70 per week, however, this is likely to be an underestimation given that the research relied on focus groups, which should be more biased towards the self-selection of relatively independent and mobile visually impaired people, and probably against those with most or recent sight-loss.

3. Equalisation of Blind Persons Pension with Disability Allowance

Currently, those on the Blind Persons Pension are at a disadvantage in several ways when compared with those on the Disability Allowance. For example:

  • Disability Allowance is payable from 16, but the Blind Persons Pension only from 18.
  • Capital disregard is €50,000 for the Disability Allowance, but only €20,000 for the Blind Persons Pension.
  • There are no disregards for partners or spouses on Blind Persons Pension, but some disregards for these regarding Disability Allowance
  • While on Disability Allowance, full Medical Card entitlements are allowable up to an income of €427 per week, but with the Blind Persons Pension, no extra earnings income is permitted for a recipient to retain their Medical Card benefits.

All of these anomalies are unjustifiable, and appeared to have accrued by neglect rather than design. The Blind Persons Pension should be put on a par with the Disability Allowance in all respects as soon as possible. Since there are only slightly more than a thousand people in receipt of the Blind Persons Pension, fixing these discrepancies should not be onerous, but it is the fair and right thing to do.

3. Visually Impaired Passengers

The EU Parking Permit scheme for disabled drivers and passengers means that blind passengers (along with severely physically impaired passengers/drivers) have disabled parking rights.

Visually impaired people have a comparatively restricted ability to engage in “active modes” of transport, and as such, it is an anomaly (and discrimination on the basis of disability) that they are not also eligible for the Disabled Drivers and Disabled Passengers Scheme, which provides a range of tax reliefs linked to the purchase and use of specially constructed or adapted vehicles by drivers and passengers with a disability. Visually impaired people may not need adapted vehicles, but the necessity of their being driven should be reflected in the same tax reliefs and toll exemptions, i.e., as set out in the Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations 1994 (SI 353/1994) as amended.

5. Talking Books should be VAT-free

21% VAT needs to be removed from talking books (to match print book counterparts). This helps to address the difficulties in educational and cultural access experienced by blind people, especially having lost their sight later in life, and recognises the barrier to purchasing talking books caused by the systemic impoverishment of visually impaired people.

6. Removal of VAT on dog-food for guide-dogs.

A guide dog is an aid to VIPs both for independent living and mobility. As such, the costs of maintaining them should be vat exempted, as is the case for adaptive technology, which also can be seen as an aid to independent/living/mobility.

So, VAT should be removed from all purchases necessary for the maintenance of guide dogs, including dog-food.

7. TV license exemption to all visually impaired people – whether on welfare or not.

De facto this is the case anyway, since An Post has been thwarted in the Courts for trying to chase down blind people who had not officially been exempted. But visually impaired people should not have to worry about such things. This is a good time to remind the State that the vast majority of television programming in Ireland does not have Audio Description, and so is inadequately accessible to visually impaired viewers/audiences.

8. €2 tax on all Prescriptions for Medical Card Holders

When Fianna Fáil and the Green Party introduced this tax (€2.50 back then) in 2009, it was said to be a temporary measure necessary in the drastic economic circumstances that the State found itself in.

Eleven years on, and this regressive tax has only been reduced by 50c. Because this is a nasty little tax that hits the most vulnerable in society, it needs to be immediately removed, and removed completely. Many of our members are dependent on medicine related to their eye conditions, and this tax effectively taxes them on those eye conditions, or the prevention of those conditions getting any worse – which would be even more costly to the State.

As such, an affected person with a visual impairment on a social welfare payment will necessarily be poorer than their sighted comparitor as a result of this regressive tax. So, it is discriminatory as well as immoral.

9. VVI to be Closely Consulted

Apart from the above, no budget measures specifically relating to visually impaired people should be made without first closely consulting with Voice of Vision Impairment (as Ireland’s national DPO specifically focusing on visual impairment related issues).

Similarly, no budgetary changes should be made concerning disability in general without all national DPOs being closely consulted with.

10. Seed Funding for a National Universal Accessibility through Technology Scheme

As a basic step to using technology to empower visually impaired people in society, a national and universal scheme to provide access to all signage both digital and static, should be explored through consultations with VVI and other national DPOs. At last, technology has reached the point at which we can now implement affordably and easily those requirements, outlined in both the 2005 Disability Act (and the 2006 NDA Code of Practice), the Equal Status Acts, and most importantly of all, Article 9 of the CRPD.

Whereas, before, such technology may have seemed too expensive and not universal enough for widespread application, this landscape is rapidly changing, and Ireland should be at the forefront of utilising such technology to improve the lives of visually impaired people.

Possibilities include individual accessible technology grants from lottery funds, and a national assistive technology library where visually impaired people can test out devices.

Categories
Newsletter Submissions & observations

Legal Opinion for VVI as a DPO – for all DPOs

Date: 27 July 2021

What constitutes a Disabled Persons Organisation under the United Nations Convention on the Rights of Persons with Disabilities.

OPINION
To:  Voice of Vision Impairment (https://www.vvi.ie)
From: Michael Lynn S.C. and Philip Reynor Solicitor: Eversheds Sutherland

  1. Background
  2. Summary
  3. VVI Concerns
  4. Ireland and the CRPD
  5. Optional Protocol to the CRPD
  6. Key provisions of the CRPD in respect of DPOs: Articles 4(3) and 35(4)
  7. What is a ‘Disabled Persons Organisation’?
  8. The scope of Article 4(3)
  9. Article 33
  10. Articles 4 and 33 as linked with other provisions of the CRPD
  11. Conclusion

I. Background

  1. Voice of Vision Impairment (‘VVI’) is a voluntary all-Ireland organisation established to campaign for the needs and rights of disabled people, with particular experience in, and focus on, the area of persons with a visual impairment (‘VIPs’). VVI was set up specifically as a national Disabled Persons Organisation (‘DPO’) in line with the Convention on the Rights of Persons with Disabilities (‘CRPD’) in July 2019.
  2. We use the phrase “disabled people” rather than “people with disabilities,” as the former reflects the ‘social model’ of disability rather than the so-called ‘medical model’. The social model has as its basis that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people, so enabling them to be independent and equal in society. The so-called medical model categorises people as disabled because they have an impairment or difference, which may or may not be receptive to medical or other treatment. Many disabled rights activists believe this medical model focuses on impairment rather than need, creating low expectations that impede the achievement of independence, choice and control.
  3. Ireland is due to publish its first State Report on its implementation of the CRPD this year. It published a draft report for the purpose of consultation on 3rd December 2020. Several organisations, including VVI, which describe themselves as national DPOs have come together to work as a coalition on a shadow report.
  4. VVI has raised a query in relation to what constitutes a DPO under the provisions of the CRPD, specifically with regard to the provision of services to disabled persons, and what role should a DPO play in policy making?
  5. VVI would like a legal opinion on the interpretation of a DPO under the CRPD.

II. Summary

  1. DPOs play a central role under the CRPD and, as the authority on disability, should be considered as the only representative organisations when it comes to disability.
  2. Organisations of disabled people (i.e. DPOs) can only be those that are led, directed and governed by disabled people. A clear majority of the membership of a DPO should be recruited from among disabled people themselves.
  3. The membership of a DPO must be open to anyone from their designated impairment grouping(s) and, importantly, at least half of a DPO’s employees should be disabled.
  4. The CRPD clearly establishes that DPOs must be afforded the opportunity to participate and, in that regard, should not only be closely consulted but must also be actively involved and prioritised by States parties as the only representative organisations.
  5. It is particularly important from the perspective of participation, that the term ‘representative organisation’ in the context of the CRPD is understood to mean a DPO and is not broadened in scope to include non-DPOs (such as service providers).
  6. The essence of a DPO is that it is composed of disabled persons, and led by them. It is to be distinguished from a service provider. Nor is it simply a campaign group. A DPO is an organisation owned and led by a clear majority of disabled persons, which thereby ensures their full participation, understanding and promotion of their interests.
  7. Under the CRPD, a DPO has an acknowledged role to play in public consultation and decision-making. This involvement extends to the negotiation, development, and drafting of policy and legislation by States parties. The pooled expertise and collective agency of disabled people is extremely important.
  8. States parties should systematically and openly approach, consult and involve, in a meaningful and timely manner, DPOs. This requires providing access to all relevant information, including the websites of public bodies, through accessible digital formats and reasonable accommodation when required, such as the provision of sign language interpreters, Easy Read text and plain language, Braille and tactile communication.
  9. Permanent consultation mechanisms with DPOs should be established, including round tables, participatory dialogues, public hearings, surveys and online consultations, respecting their diversity and autonomy.
  10. The Optional Protocol is a vital aspect of the CRPD as it provides an important advocacy tool for people concerned with violations of their rights. Despite the Department of Justice and Equality stating in 2015 that Ireland intends “to sign and ratify the Optional Protocol”, this has yet to occur.
  11. The failure of the Government to ratify the OP-CPRD places a significant barrier to disabled people who wish to complain to the UN if their rights are violated and weakens the effect of the CRPD in Ireland.

III. VVI Concerns

  1. VVI believes that rights-based organisations and service providers should be kept separate in order to remain objective and avoid conflicts of interest, particularly where there is State funding and/or consultation involved.
  2. VVI is concerned that the classification ‘DPO’ may be being wrongly extended to service providers who are not DPOs. This may have implications for which organisations should be prioritised by the State as DPOs for the purpose of compliance with the CRPD.
  3. VVI is concerned that it itself is not being adequately recognised, or appropriately prioritised, as a DPO. Under the CRPD, a DPO has an acknowledged role to play in public consultation and decision-making, so VVI should be facilitated in carrying out such functions. It has provided several examples of the obstacles it can face in contributing to public schemes which impact on VIPs, including the following three.
  4. (i) VVI was asked in November 2020 if it was interested in being consulted on the design for a new railway station in Waterford. It said that it was, but was then given no role as a service provider was preferred. (ii) VVI has raised five issues in respect of the National Transport Authority’s Bus Connects plan for a re-design of bus routes in the Greater Dublin Area but these, it says, are being ignored. (iii) The Public Participation Network (‘PPN’) is currently one of the few ways that DPOs have of engaging with local authorities. Current PPN guidelines provide that all members are equal which fails to recognise the special position of DPOs and the support they need. For example, requests to revert the PPN Handbook to original braille have, VVI says, been ignored with deference, instead, being given to the advice of a disability service-provider which claimed such provision was unnecessary.

IV. Ireland and the CRPD

  1. The CRPD is a landmark legal instrument aimed at ensuring the protection and vindication of the human rights and fundamental freedoms of disabled persons. It forms the cornerstone of an international framework established to guide national policy-making and legislation, and international cooperation, for building an inclusive society, and fostering disability-inclusive development. It has been described as bringing about a paradigm shift such that disabled persons are, as they should be, respected as active subjects with equal rights, capable of taking their own decisions and contributing to society, rather than objects of treatment, charity or other support.
  2. The aim of the CRPD is to guide and support State parties in the formulation and enforcement of their legislation, strategies, policies and programmes, so as to promote the full empowerment, equality, and inclusion of disabled persons.
  3. As expanded upon below, one of the principles at the centre of the CRPD is the fundamental role to be given to DPOs, in order to ensure the effective participation of disabled persons in public life. This participation includes not only the involvement of DPOs in the implementation and monitoring of the CRPD but also aims to guarantee that disabled persons are fully and decisively involved in the making of decisions that affect their lives and rights at local, national and international levels. This involvement extends to the negotiation, development, and drafting of policy and legislation by States parties. The pooled expertise and collective agency of disabled people is extremely important.
  4. The CRPD was adopted by the United Nations in 2006. The European Union acceded to the CRPD through Council Decision 2010/48/EC, formally adopted on 26 November 2009. The instrument of ratification on behalf of the EU was then deposited in December 2010. This was the first occasion that the EU became a party to an international human rights treaty.
  5. In 2007, Ireland signed the CRPD and shortly thereafter it declared that as a dualist state it was required to be in a position to meet the obligations assumed under the terms of an international agreement before bringing it into force domestically. This meant that in order to ratify the CRPD, Ireland would first have to amend a range of its legislation. With the exception of the passage of the Assisted Decision-Making (Capacity) Act 2015, which has still not been brought into force, little was done in this regard by the government from 2007 to 2018, with the dualist argument being employed to excuse the delay in ratification of the CRPD. In 2015 the Department of Justice and Equality published its ‘Roadmap to Ratification of the United Nations Convention on the Rights of Persons with Disabilities’. This document was produced eight years after the signing of the CRPD by Ireland and identified large volumes of legislative provisions as non- compliant with the CRPD. A Disability (Miscellaneous Provisions) Bill 2016 (‘the 2016 Bill’) was introduced with the purpose of amending a range of legislation so that Ireland could ratify the CRPD.
  6. On 20 March 2018 – with the vast majority of the required legislative amendments remaining outstanding – Ireland finally ratified the CRPD, even though the 2016 Bill has yet to be enacted. It was amended by the Select Committee on 30 January 2019 and lapsed with the dissolution of the Dáil and Seanad on 14 January 2020. In the Legislation Programme Autumn Session 2020, the status of the Bill was listed as follows: ‘Revised heads in preparation’.
  7. At long last, a timeline has now been published by the government for the commencement and implementation of another important piece of legislation, the Assisted Decision-Making (Capacity) Act 2015 (as amended), which should now be operational by June 2022.
  8. Having ratified the CRPD in 2018, Ireland has an obligation to report periodically to the UN on its implementation of the Convention. It must write a report for the CRPD Committee every four years, and answer questions raised by the Committee.
  9. The Government must also ensure there is an independent organisation to monitor how the CRPD is being put into practice across the country. This is being done by the Irish Human Rights and Equality Commission (‘IHREC’). This process is referred to in the CRPD as the ‘Independent Mechanism’.
  10. The purpose of the Independent Mechanism is to monitor the operation of the CRPD and write reports to the CRPD Committee. The CRPD provides that disabled people must be a part of this monitoring process as this ensures that a clear picture of the lives of disabled people is presented.

V. Optional Protocol to the CRPD

  1. The Optional Protocol to the CRPD (GA resolution A/RES/61/106) (‘OP- CRPD’) – which entered into force at the same time as the Convention – establishes two additional mandates for the CRPD Committee:
    (i) the receipt and examination of individual complaints; and
    (ii) the undertaking of inquiries in the case of reliable evidence of grave and systematic violations of the CRPD.
  2. This is a vital aspect of the CRPD as it provides an important advocacy tool for people concerned with violations of their rights.
  3. Complaints may only be communicated against a State party that has ratified or acceded to the OP-CRPD, and only upon the exhaustion of all available and effective domestic remedies. Ratification of the OP-CRPD by Ireland would allow the CRPD Committee to receive, consider and provide its views and recommendations in relation to alleged violations by Ireland of CRPD rights as communicated by disabled persons or those acting on their behalf.
  4. Despite the Department of Justice and Equality stating in 2015 that Ireland intends “to sign and ratify the Optional Protocol to the Convention on the Rights of Persons with Disabilities at the same time as the Convention itself is being ratified”, this did not occur upon ratification of the CRPD and Ireland has yet to ratify the OP-CRPD (see: ‘Roadmap to Ratification of the United Nations Convention on the Rights of Persons with Disabilities’; at p.13).
  5. In relation to the decision not to ratify the OP-CRPD, the Department of Justice and Equality stated:

“The matter of signing the optional protocol will be reviewed and further considered following completion of the first reporting cycle under the Convention. Due to the variability and uncertainty of the reporting cycle we are not in a position to give an exact date at this juncture.”

  1. That report was due to be published two years after the ratification of the CRPD by Ireland, i.e. on 20 April 2020, but remains outstanding to date. The failure of the Government to ratify the OP-CPRD places a significant barrier to disabled people who wish to complain to the UN if their rights are violated and weakens the effect of the CRPD in Ireland.
  2. Nevertheless, in addition to the Government, the Independent Mechanism and civil society organisations, disabled people and their representative organisations can send their own reports to the CRPD Committee. The CRPD Committee will then examine all these reports and revert to the Government in relation to how it can better protect the rights of disabled people.

VI. Key provisions of the CRPD in respect of DPOs: Articles 4(3) and 35(4)

  1. Article 4(3) of the CRPD, headed ‘General obligations’, states (emphasis added):

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

  1. What constitutes a “representative organization” for the purposes of the CRPD? In order to provide guidance for States, in 2018 the CRPD Committee published General Comment No.7 on the participation of disabled persons, including disabled children, through their representative organisations, in the implementation and monitoring of the Convention. From the outset, when discussing the definition of “representative organizations,” the wording of paragraph 10 of General Comment No.7 (as set out in full in paragraph 49 below) makes it clear that the phrase “representative organizations” is another expression which means “organizations of persons with disabilities” or DPOs. Indeed, this is made clear throughout General Comment No.7 (see, for example, paras. 5 to 12, and 16). By defining a representative organization specifically as a DPO, it clearly intended that DPOs are to be the only representative organisations for the purpose of disability. As such, service providers and other non-DPOs are not to be considered as “representative organizations” for the purposes of the CRPD.
  2. In addition to providing for consultation with disabled persons through their representative organisations, or DPOs, in the implementation of legislation and policies, Article 33(3) of the CRPD ‘National implementation and monitoring’ provides for participation in monitoring compliance with the CPRD (emphasis added):

“Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.”

  1. It is important to note that Article 33(3) refers to ‘participation’. Similarly, Article 4(3) states that disabled persons should not only be “closely consult[ed]” but also be “actively involve[d]” by States parties “through their representative organisations [i.e. DPOs]”. This implies that “active involvement” is a form of participation that is something more than mere consultation. In this respect and for the avoidance of any doubt, it should be noted that where the CPRD refers to ‘representative organisations’ it is referring to DPOs and not, for example, service providers or other non-DPOs. It is particularly important from the perspective of participation, that the term ‘representative organisation’ in the context of CPRD is understood to mean a DPO only and is not broadened in scope to include non- DPOs.
  2. Participation in public life, as both a principle and a human right, is well established in a number of international human rights treaties such as Article 21 of the Universal Declaration of Human Rights, Article 5(c) of the International Convention on the Elimination of All Forms of Racial Discrimination, Article 7 of the Convention on the Elimination of All Forms of Discrimination against Women, and Articles 12 and 23(1) of the Convention on the Rights of the Child.
  3. One of the purposes of General Comment No.7 is to “clarify States parties’ obligations under articles 4(3) and 33(3) and their implementation …”. It outlines in paragraph 7 some of the ways in which States parties can fulfil these obligations, by granting financial or other assistance to DPOs.
  4. Whilst a UN Committee’s General Comment is only of persuasive force in how one properly interprets the Convention article(s) to which it refers, General Comments are nevertheless of potential importance; a General Comment by the Committee on Economic, Social and Cultural Rights was cited by the Supreme Court in NHV v. Minister for Justice [2018] 1 I.R. 246 in its discussion on the right to seek work under the Constitution.
  5. The CRPD’s Committee’s General Comment No. 7 states that the “effective and meaningful participation of persons with disabilities, through their representative organizations, is … at the heart of the Convention.” It continues:

4. Often, persons with disabilities are not consulted in the decision-making about matters relating to or affecting their lives, with decisions continuing to be made on their behalf. Consultation with persons with disabilities has been acknowledged as important in the last few decades, thanks to the emergence of movements of persons with disabilities demanding recognition of their human rights and their role in determining those rights. The motto “nothing about us without us” resonates with the philosophy and history of the disability rights movement, which relies on the principle of meaningful participation.

5. Persons with disabilities still face significant attitudinal, physical, legal, economic, social and communication barriers to participate in public life. Before the entry into force of the Convention, the views of persons with disabilities were dismissed in favour of those of third-party representatives, such as organizations “for” persons with disabilities.

  1. Paragraphs 8 and 9 of the General Comment note the shortcomings in many States.

8. The Committee, however, continues to observe an important gap between the goals and the spirit of articles 4(3) and 33(3) and the degree to which they have been implemented. This is due, among other things, to the absence of meaningful consultation with and involvement of persons with disabilities, through their representative organizations, in the development and implementation of policies and programmes.

9. States parties should acknowledge the positive impact on decision-making processes and the necessity of involving and ensuring the participation of persons with disabilities, through their representative organizations, in such processes, notably because of their lived experiences and knowledge of the rights to be implemented. States parties should also consider the general principles of the Convention in all measures taken for its implementation and monitoring, and in advancing the 2030 Agenda for Sustainable Development and its goals.

  1. When Article 33(3) is read in conjunction with Article 4(3), it becomes clear that disabled people through DPOs must not only be involved in the monitoring framework of Article 33(2), but also the focal point and coordination mechanism of 33(1). In order to facilitate, and make effective, this intended involvement, the State may be obliged to work on building capacity within civil society to ensure that DPOs have the ability to participate meaningfully in the process of implementation and monitoring.
  2. In relation to the Government’s report to the CRPD Committee, it should involve disabled people through DPOs in assessing how it is carrying out its obligations under the CRPD (see Article 35(4) of the CRPD).
  3. Moreover, the central place given to DPOs by the CRPD implies that States parties need to be rigorous in determining what organisation is a DPO and what is not. Paragraph 10 of General Comment No. 7 confirms this, stating:

10. The involvement and participation of persons with disabilities through “representative organizations”, or organizations of persons with disabilities, is inherent in both articles 4(3) and 33(3). For proper implementation, it is important for States parties and the relevant stakeholders to define the scope of organizations of persons with disabilities and recognize the different types that often exist.

  1. In Ireland, the State’s primary response to Articles 4(3) and 33(3) appears to have been the Disability Participation and Consultation Network (‘DPCN’), which neither prioritises DPOs nor even distinguishes them from non-DPOs, and comprises a majority of service providers. This does not seem to give DPOs the sort of preferential position and role that is envisaged by the CRPD. The Committee on the Rights of Persons with Disabilities published its Initial Report under the Convention on the Rights of Persons with Disabilities (Ireland) (December, 2020) which states that “This [DPC] Network is comprised primarily of Disabled Persons Organisations”. While the DPCN does have some DPO members, it appears that a significant majority of its members, including its organising member, Inclusion Ireland, are service providers which would not qualify as DPOs for the purposes of the CRPD. Moreover, there are now over 70 members of the DPCN which renders “close consultation” with DPOs as mandated by Article 4.3 of the CRPD (see para. 57 below) impractical and doubtful.

VII. What is a ‘Disabled Persons Organisation’?

  1. The essence of a DPO is that it is composed of disabled persons, and led by them. It is to be distinguished from a service provider. Nor is it simply a campaign group. It is an organisation owned and led by disabled persons, which thereby ensures their full participation, understanding and promotion of their interests.
  2. A distinction is made between an ‘organisation of persons with disabilities’ (i.e. representative organisations or DPOs), and other ‘civil society organisations’ (‘CSO’) and ‘organisations “for” persons with disabilities’ (‘OFPD’).
  3. Paragraph 11 of General Comment No. 7 refers to some distinguishing characteristics of DPOs. It states (underlining added):

“The Committee considers that organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. They can only be those that are led, directed and governed by persons with disabilities. A clear majority of their membership should be recruited among persons with disabilities themselves. Organizations of women with disabilities, children with disabilities and persons living with HIV/AIDS are organizations of persons with disabilities under the Convention. Organizations of persons with disabilities have certain characteristic aspects, including the fact that:

(a) They are established predominantly with the aim of collectively acting, expressing, promoting, pursuing and/or defending the rights of persons with disabilities and should be generally recognized as such;

(b) They employ, are represented by, entrust or specifically nominate/appoint persons with disabilities themselves;

(c) They are not affiliated, in the majority of cases, to any political party and are independent from public authorities and any other non-governmental organizations of which they might be part/members of;

(d) They may represent one or more constituencies based on actual or perceived impairment or can be open to membership of all persons with disabilities;

(e) They represent groups of persons with disabilities reflecting the diversity of their backgrounds (in terms of, for example, sex, gender, race, age, or migrant or refugee status). They can include constituencies based on transversal identities (for example, children, women or indigenous people with disabilities) and comprise members with various impairments;

(f) They can be local, national, regional or international in scope;

(g) They can operate as individual organizations, coalitions or cross-disability or umbrella organizations of persons with disabilities, seeking to provide a collaborative and coordinated voice for persons with disabilities in their interactions with, among others, public authorities, international organizations and private entities.

  1. The phrase “clear majority” in para. 11 implies something more substantial than a simple majority of 51:49. It suggests that a DPO should be structured in such a way that it is clearly led and governed by disabled people, not just technically so. So, the structure taken as a whole must ensure such leadership and governance.
  2. The CRPD Committee draws a very important distinction between DPOs and other civil society organisations, and emphasises strongly the special place of DPOs, and the priority they should be given in ensuring their participation in proposed legislation and initiatives aimed at assisting disabled persons (emphasis added).

13. Organizations of persons with disabilities should be distinguished from organizations “for” persons with disabilities, which provide services and/or advocate on behalf of persons with disabilities, which, in practice, may result in a conflict of interests in which such organizations prioritize their purpose as private entities over the rights of persons with disabilities. States parties should give particular importance to the views of persons with disabilities, through their representative organizations, support the capacity and empowerment of such organizations and ensure that priority is given to ascertaining their views in decision-making processes.

14. A distinction should also be made between organizations of persons with disabilities and civil society organizations. The term “civil society organization” comprises different kinds of organizations, including research organizations/institutes, organizations of service providers and other private stakeholders. Organizations of persons with disabilities are a specific type of civil society organization. They may be part of a mainstream umbrella civil society organization and/or coalitions that do not necessarily advocate specifically for the rights of persons with disabilities, but can support in mainstreaming their rights in the human rights agenda. In accordance with article 33(3), all civil society organizations, including organizations of persons with disabilities, have a role to play in monitoring the Convention. States parties should give priority to the views of organizations of persons with disabilities when addressing issues related to persons with disabilities, and develop frameworks to request civil society organizations and other stakeholders to consult and involve organizations of persons with disabilities in their work related to the rights enshrined in the Convention and other topics, such as non-discrimination, peace and environmental rights.

VIII. The scope of Article 4(3)

  1. Article 4(3) requires close consultation and active involvement with disabled persons, through their DPOs, in legal and regulatory frameworks and procedures across all levels and branches of Government. The involvement of DPOs should be a mandatory step prior to the approval of laws, regulations and policies, whether mainstream or disability specific. Therefore, consultations should begin in the early stages and provide an input to the final product in all decision-making processes. Consultations should include organizations representing the wide diversity of disabled persons, at the local, national, regional and international levels (para. 15, Gen. Comm. No. 7).
  2. The legal obligation of States parties to ensure consultations with DPOs encompasses access to public decision-making spaces and also other areas of research, universal design, partnerships, delegated power and citizen control (para. 17, Gen. Comm. No. 7).
  3. The phrase “concerning issues relating to persons with disabilities”, as referred to in Article 4(3), covers the full range of legislative, administrative and other measures that may directly or indirectly impact the rights of disabled persons. It includes decision-making processes, such as general laws and the public budget or disability-specific laws, which might have an impact on their lives (para. 18, Gen. Comm. No. 7). In cases of dispute about the direct or indirect impact of the measures under discussion, it falls to the public authorities of the States parties to prove that the issue under discussion would not have a disproportionate effect on disabled persons and, therefore, that no consultation is required (para. 19, Gen. Comm. No. 7).
  4. To “closely consult with and actively involve” disabled persons through DPOs is an obligation under international human rights law that requires the recognition of every person’s legal capacity to take part in decision-making processes based on their personal autonomy and self-determination (para. 21, Gen. Comm. No. 7). States parties should systematically and openly approach, consult and involve, in a meaningful and timely manner, DPOs. This requires providing access to all relevant information, including the websites of public bodies, through accessible digital formats and reasonable accommodation when required, such as the provision of sign language interpreters, Easy Read text and plain language, Braille and tactile communication. Open consultations provide disabled persons with access to all the spaces of public decision-making, on an equal basis with others, including national funds and all the relevant public decision-making bodies relevant to the implementation and monitoring of the CRPD (para. 22, Gen. Comm. No. 7; see, also, paras. 43, 45 and 46).
    Public authorities should give due consideration and priority to the opinions and views of DPOs when addressing issues directly related to disabled persons. Public authorities leading decision-making processes have a duty to inform DPOs of the outcomes of such processes, including an explicit explanation in an understandable format of the findings, considerations and reasoning of decisions on how their views were considered and why (para. 23, Gen. Comm. No. 7; see, also, paras. 47, 48 and 49).
  5. Public authorities should give due consideration and priority to the opinions and views of DPOs when addressing issues directly related to disabled persons. Public authorities leading decision-making processes have a duty to inform DPOs of the outcomes of such processes, including an explicit explanation in an understandable format of the findings, considerations and reasoning of decisions on how their views were considered and why (para. 23, Gen. Comm. No. 7; see, also, paras. 47, 48 and 49).
  6. “Full and effective participation”, as set out in Art. 3(c), requires that States parties facilitate participation and consult with disabled persons representing the wide diversity in impairments. By guaranteeing the participation of DPOs, disabled persons will be able to better identify and point out measures that could either advance or hinder their rights, which ultimately yields better outcomes for such decision-making processes. Full and effective participation should be understood as a process, not as an individual one-time event (para. 28, Gen. Comm. No. 7). Full and effective participation can also be a transformative tool for social change, and promote agency and empowerment of individuals. The involvement of DPOs in all forms of decision-making strengthens the ability of disabled persons to advocate and negotiate, and empowers them to more solidly express their views, realize their aspirations and reinforce their united and diverse voices. States parties should ensure the full and effective participation of disabled persons, through their DPOs, as a measure to achieve their inclusion in society and combat discrimination against them. States parties that ensure full and effective participation and engage with DPOs improve transparency and accountability, making them responsive to the requirements of such persons (para. 33, Gen. Comm. No. 7).1
  7. A range of obligations, such as the provision of funding for DPOs, the appointment of DPO members on representative bodies, and clear structures aimed at ensuring primacy for DPOs are also recommended by the General Comment No. 7 as arising from the CRPD: see paras. 42 to 66.

IX. Article 33

  1. Article 33 supplements Article 4(3). It requires the involvement of civil society in the monitoring of the State’s compliance with the CRPD and this should include DPOs, which should be heard and recognised through formal mechanisms.
  2. Article 33(3) implies that States parties should support and fund the strengthening of capacity within civil society, in particular DPOs, to ensure their effective participation in the processes of the independent monitoring frameworks. DPOs should have appropriate resources, including support through independent and self-managed funding, to take part in the independent monitoring frameworks and ensure that reasonable accommodation and accessibility requirements for its membership are met. The support and funding of DPOs in relation to Article 33(3) complements States parties’ obligations under Article 4(3) of the Convention and do not preclude them (para. 39, Gen. Comm. No. 7).

X. Articles 4 and 33 as linked with other provisions of the CRPD

  1. Articles 4(3) and 33(3) are important as instruments to achieve the obligations arising from other articles in the CRPD. For example, they are key to achieving equality and non-discrimination, as required by Article 5.
  2. Priority objectives for States parties in implementing the CRPD include the creation of an enabling environment for the establishment and functioning of DPOs, by adopting a policy framework favourable to their establishment and sustained operation. This includes guaranteeing their independence and autonomy from the State, the establishment, implementation of and access to adequate funding mechanisms, including public funding and international cooperation, and the provision of support, including technical assistance, for empowerment and capacity-building. Legislation and policies should be adopted that recognize the right to participation and involvement of DPOs and regulations that establish clear procedures for consultations at all levels of authority and decision-making. This legislative and policy framework should provide for the mandatory realization of public hearings prior to the adoption of decisions, and include provisions requiring clear time frames, accessibility of consultations and an obligation to provide reasonable accommodation and support. This can be done through clear references in laws and other forms of regulations to the participation and selection of representatives from DPOs. There should also be the establishment of permanent consultation mechanisms with DPOs, including round tables, participatory dialogues, public hearings, surveys and online consultations, respecting their diversity and autonomy (see para. 94(b), (e) and (f), Gen. Comm. No. 7).
  3. Notably, States parties should prohibit discriminatory and other practices by third parties, such as service providers, directly or indirectly interfering with the right of disabled persons, including their DPOs, to be closely consulted and actively involved in decision-making processes related to the Convention (para. 51, Gen Comm. No. 7). Also, States parties should put in place mechanisms to denounce the conflicts of interests of representatives of organizations of disabled people or other stakeholders, to prevent their negative impacts on the autonomy, will and preferences of disabled people (para. 52, Gen. Comm. No. 7). States parties should adopt provisions granting organizations of disabled people seats on, for example, standing committees and/or temporary task forces by giving them the right to nominate working members to these bodies (para. 53, Gen. Comm. No. 7).
  4. Access to information (Article 21 CRPD) is necessary for DPOs to be involved and to fully participate and freely express their opinions in the monitoring process. Such organizations need to receive the information in accessible formats, including digital formats, and technologies appropriate to all forms of disabilities, in a timely manner and without additional cost. This includes the use of sign languages, Easy Read, plain language and Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of choice by disabled people in official interactions. Sufficiently prior to any consultation, all relevant information, including specific budgetary, statistical and other relevant information necessary for an informed opinion, should be made available (para. 84, Gen. Comm. No. 7).

XI. Conclusion

  1. It is clear that DPOs are fundamental to the proper implementation of the CRPD. The CRPD Committee has advised extensively on this – as summarised above. Unfortunately, Ireland’s very late ratification of the CRPD, and failure to ratify the Optional Protocol, suggest that the State has not properly addressed how it will introduce the mechanisms that are required to ensure that DPOs play the crucial role that is entrusted to them by the CRPD. It would appear to be an omission that now requires urgent attention in close consultation with VVI and other national DPOs.
  2. Should VVI have further questions, we will try our best to reply to them.

Categories
Submissions & observations

VVI Observations on the Athenry Market Square Part 8 Proposal

May 31st, 2021

Introduction

This is the submission on the Athenry Market Square Part 8 proposal from Voice of Vision Impairment (VVI), which is a Disabled Persons Organization (DPO) under the Convention on the Rights of People with Disabilities (CRPD).

We draw your attention to Article 4.3 of the CRPD, which obliges states parties to engage in close consultation with DPOs on designs and policies. Directly related to this is paragraph 23 of General Comment 7 of the CRPD, which obliges all “authorities” to give detailed and reasoned responses to DPO submissions.

VVI is the only national DPO in Ireland focusing on issues relating to visual impairment.

Inaccessible Information

The images in the proposal were not adequately described for those of us with severe visual impairments (cf. EU Websites Accessibility Directive, 2016; European Accessibility Act, 2019; Disability Act, 2005, S28).

As such, visually impaired people, also through their national DPO, were denied the proper opportunity to engage in the consultation on an equal basis with their sighted comparitors.

Pedestrianisation

VVI has concerns about the proposed pedestrianisation of Market Square. We note that there are two banks, an undertaker, a doctor’s surgery, and a chemist, on the square. In order to exercise their right of access to these businesses, many disabled people, especially those who are independent and relying on public transport (such as taxi), or private transport (including modified or adapted vehicles), need to be able to get as close as possible to their destinations in order to locate them safely.

For example, it is not much good to a blind passenger if a taxi-driver has to let him/her off outside the Square and tells them they have to fend for themselves.

Furthermore, we understand that there will be traffic access to the square by one street only, implying that the three other access streets are also to be pedestrianised. The same issue arises to businesses and dwelling places on these streets as well.

These measures would effectively exclude many disabled people from the centre of Athenry. As much as anyone else, disabled people have Human Rights of access to their community/environment (inter alia, cf. European Convention on Human Rights, Article 8, which links in to Article 14 (discrimination).

Article 9 of the CRPD also guarantees easy and safe access to our environment, as does the Arhus Convention (Environment Act, 2011).

No Shared Space Unless Wholly Unavoidable

According to UK Guide Dogs research through the University of London (2009), guide Dogs need a minimum of 60mm front-facing flat kerbs in order not to walk out in front of traffic. This needs to be maintained, even if occasional traffic is permitted in the Square. We recommend 125mm kerbs (as is standard in Northern Ireland since 2015).

We recommend footway widths of 2.5m in order to adequately cater for power wheelchairs passing each other. Where the surrounding streets are too narrow for this, we recommend a replacement of the narrow kerbs with a strongly defined corduroy tactile strip where the current kerbs are. This is not ideal for guide-dog users, as just stated, but is a compromise that would allow wheelchair users to access the buildings on these streets. Guide-dog handlers would have to navigate these four streets manually.

Categories
Submissions & observations

Dept. of Health Shuts Out DPOs instead of Prioritising Them

Critique of NESC HDF Paper “Building Better…”, June 2021

This critique relates to the report: “Building a New Relationship between Voluntary Organisations and the State in the Health and Social Care Sectors: NESC Secretariat Paper for the Dialogue Forum with Voluntary Organisations (June 2021), by Dr. Damian Thomas. Perenthetic references to the report in this document will be to Thomas, 2021).

Executive Summary of VVI’s Response

Long-term consultation regarding disability services is a major theme of the NESC-HDF paper being discussed here.

At least with regard to disability issues, this report must be set aside because its recommendations ignore and contravene the State’s “general obligations” under the Convention on the Rights of People with Disabilities (CRPD).

In particular, the total absence of “organizations of people with disabilities” in the Health Dialogue Forum itself, in the preparation of the paper (interviewees and publications), as well as in the consequent recommendations, ar anathema to Article 4.3 and General Comment 7 of the CRPD, in particular – i.e., sections dealing with “consultation.”

Background

In 2019, Catherine Day was commissioned to head a report into the relationship between the State and the “voluntary” health service sector. The report was published as The Independent Review Group report (IRG, 2019).

As a result of one of its recommendations, the Minister of Health set up a Health Dialogue Forum (HDF) where the Dept. of Health could consult with the voluntary sector on health service provision with a view to getting the best quality of provision for the service-users.

This HDF in turn commissioned the National Economic and Social Council to report into positive lessons to be learnt from the covid experience, to show the way forward in future co-operation between the State and service-providers. 70% of disability services are provided by the “voluntary” sector (Dept. of Health Capacity Report, July, 2021).

The NESC report being responded to here has been signed off on by the Minister for Health and the respective CEOs of the HSE, Dept. of Health etc.

Summary of Report

The NESC report sees the changes in service-provision during covid (Chapter 3) as being evidence of a new transition to “accountable autonomy” of voluntary service providers (Chapters 4 and 5). This “accountable autonomy” is a proposed solution to the claimed problem in the IRG that a balance had to be struck by the service provider between accountability to the State funder on one hand, and autonomy of the service provider on the other. Key to this new way of working are the two key forums: firstly the Dept. of Health’s HDF (mentioned above), and secondly, the newly reformed National Consultative Committee, set up by the HSE.

From a disability perspective, only service-providers are represented on either of these committees, and the report is certainly indicative of this gloss from the HDF perspective.

Fatal Flaw – DPOs aren’t even mentioned

The report contains dozens of perspectives from service providers, both through its main vehicle of qualitative interviews, and through service provider publications, including from many disability service providers (DSPs). DPO voices are completely absent from the report. According to the Convention on the Rights of People with Disabilities (CRPD), the only “representative organizations” of disabled people are “organizations of people with disabilities” (General Comment 7, para. 10), which we know as Disabled Persons Organisations (DPOs).

Indeed in the report itself it is clear that the authors had no idea of the existence of DPOs, let alone their significance, and there is not even one reference to the Convention on the Rights of People with Disabilities. If the authors had read the Convention and its General Comment 7, they would have learnt that “representative organizations” of disabled people, are not only to be distinguished from service providers, but that these DPOs are to be prioritised over DSPs in consultations, since the latter “may have a conflict of interests” in advocating for their service users (CRPD, General Comment 7, para. 13).

At the end of a long list of constituent members of the “voluntary sector,” the report does mention “Advocacy and representative groups,“ which could indeed refer to support groups such as parent-led groups, but that is the only slight hint that there even could be such a thing as a DPO, and even here, DPOs are neither acknowledged nor distinguished (Thomas, 2021, Ch. 2). For the rest of the report, “the disability sector” is conflated with “disability service providers,” “disability (umbrella) groups,” and “Section 38 and 39 organisations” (ibid., passim).

Apart from the author and the key Dept. of Health official acknowledging to me, personally, that they did not even know what a DPO was before my contacting them, further evidence that the authors are blithely unaware of the existence of DPOs, let alone the State’s obligation to prioritise them in consultations, occurs where we are told in regard to the National Consultative Committee:

The membership of the Committee is also to be broadened to include service providers, family representatives, the HSE and the voice of people with disabilities, reflecting the view that ‘if we are serious about collaboration everyone has to be on board…we need to have representation of people with disabilities in this committee’” (ibid., Box A5).

No matter that such disabled people could themselves be allies of or alibis for service providers instead of being represented through their DPOs as specified in the CRPD.

Giving DPO Powers to the Service Providers

There are signs that the authors actually mistake disability service providers for DPOs, e.g.:

“Their [disability service providers] roots within the local community enables these organisations not only to be more responsive to local needs, but to act as advocates for service users.” (ibid., 2.3).

Later

“… the HSE is keen to preserve in its delivery model… their [voluntary bodies’ – read service providers’] advocacy role…” and that the staff “know them and understand their needs” (ibid., 4.14).

An example of a “grass roots forum” where disabled people’s issues filter up, is given as Inclusion Ireland (a service-provider) (ibid., 3.8).

One attempted defence from a Dept. of Health official has been to say that the HDF and the report both have a very narrow remit regarding service provider issues alone. Although this can’t make sense anyway, since service-providers do not operate in a vacuum, and service-provision is exactly the sort of context that the CRPD is written for, the report itself belies the “narrow remit” claim when it conflates service provider issues with service-user issues (e.g., Alone’s phoneline identifying issues on the ground) (ibid., 4.3).

The “positive feedback” of clients or service users (ibid., 4.6) is no replacement for representation through DPOs (General Comment 7), however much the disability service provider claims to be “embedded in the community” (ibid., 4.9).

The wish “that voluntary organisations [read service-providers] are drivers of ongoing policy change rather than passive recipients… “; and the State’s commitment to “consulting with voluntary providers on a regular basis and in a meaningful way, including on Sláintecare and other relevant policy developments” so that “all members of the Forum will be invited to consider how they can best work together to deliver national strategy” (ibid., 5.6), is fitting of treatment of DPOs alone (according to General Comment 7), but we know from experience and continued exclusion that DPOs do not figure in this plan, and as such, without the clear prioritisation of DPOs, this is an utter subversion of the CRPD.

Undue Homage to Covid Practices

A worryingly cosy relationship between the State and DSPs comes in the report, with their self-praise mixed with mutual congratulations indicating somewhat of a mutually beneficial echo chamber – that may not necessarily be beneficial for disabled people.

Instead of “nothing about us without us” we have the two parties who should be accountable to us talking over our heads. Indeed, the report gives us a window on the veritably sumptuous feast of consultation that the State has been laying on for the service providers, while it has effectively closed the door to us and left us outside in the cold – the very DPOs that the State is obliged to prioritise in consultations.

We in VVI found ourselves generally shut out of HSE consultation during covid – and remain so. Our advice and recommendations generally went ignored, except in one instance when it was relayed to a service provider for it to do with as it wished.

See VVI’s Initial Submission to the Dept. of Health and HSE:

https://vvi.ie/vvi-concerned-about-covid-vaccine-plan/

So, when the State sees the current consultative forums as being “comprised of senior decision makers from the statutory and voluntary sectors” (ibid., 4.3), it turns the CRPD on its head by bestowing the decision-making role on the service providers, despite their potential conflicts of interests.

We draw a contrast between our being shunned and frustrated, with the opposite experiences of service providers being accommodated in structures that “afforded voluntary bodies a voice at the centre of the policy dialogue and a real sense that their concerns were being actively listened too” (ibid.).

Other Conceptual Confusions

The portrayal of the binary concept of service providers being both autonomous and accountable to the State – without the involvement of any other entity – (ibid., 2.4; 4.7; 5.3), only becomes possible when the primary experts and main stakeholders (DPOs), are omitted. Instead of the false binary portrayed, both the State and third party service providers, have to be accountable to DPOs, instead of a service provider (self-described) “being allowed to get on with what you are good at” (ibid., 4.4) – whatever that might mean…

Conclusion

The report is nowhere more accurate than where it states “Changing relationships, organisational culture and attitudes is not easy” (ibid., 2.5), but more than anything else, this statement should be seen as applying to the change in culture needed among the State, its report-writers, and the far-too-powerful service providers, in order to put an end to the continuous trampling of our Human Rights. Instead of proposing a “a deepening and widening of the relationship” between the State and disability service providers, which is already very cosy, we instead insist that our rights as a DPO to be prioritised in consultations be respected.

A Dept. of Health official told me, personally, that DPOs didn’t need to be even mentioned, since she felt that there were other forums where the Department was dealing with us – which is factually incorrect, as well as wholly missing the point of DPOs intrinsic significance to everything disability-related.

The “partnership” the State has with the service providers (ibid., 5.3), needs to be recalibrated and transposed to focus instead on the still-forgotten and still-condescended-to minority – disabled citizens through their DPOs. As long as service providers, instead of ourselves, continue to be prioritised in consultations on “institutional and policy reform” (ibid., 5.4), the State will remain in total contempt of the CRPD.

The overall cause for this ongoing marginalisation of DPOs is the inaction of the Department of Children, Equality, Disability, Integration, and Youth, which as the “focal point” of the CRPD, has the responsibility of co-ordinating its implementation throughout statutory bodies etc. But for the moment, it sufficient to say that this NESC report, being based on the absence of the most essential stakeholders, is irredeemably flawed.

As soon as possible, systems need to be configured so that DPOs are clearly distinguished from other actors, and prioritised in all consultations.

In the meantime, as per its obligations under international law and the guidance that is the CRPD, the State needs to set aside this NESC report with regard to disability-related matters. Indeed, since these are so bound up with non-disability matters throughout the report, it is likely that the entire report needs to be set aside.

Robbie Sinnott,
Co-ordinator of VVI
© VVI, 2021.

Categories
Submissions & observations

Submission by Voice of Vision Impairment on Part 8: Tralee Town Centre (Pavements). Phase 3

Who we are

Voice of Vision Impairment is a Disabled Persons Organisation (DPO) as set out under General Comment 7 of the Convention on the Rights of People with Disabilities.

This means that, since we are not a service-provider, and therefore have no conflict of interests, we should be prioritised in consultations regarding all matters relating to disability (GC7, para. 13). Indeed, DPOs are the only representative organisations in relation to disability (ibid., para. 10). Note that just about every matter relates to disability, including this Part 8.

Voice of Vision Impairment is the national DPO focusing on issues relating to visual impairment.

Inaccessible Information.

In violation of the EU Website Accessibility Directive (2016), the Disability Act (2005, Part 3), and Kerry County Council’s obligations under Public Sector Duty (Human Rights and Equality Act, 2014, S42), the information on this Part 3 is only partially accessible (i.e., significant parts are wholly inaccessible to blind and partially sighted users of screenreading technology).

In particular, there has been no attempt made at describing images, maps, overall project locations, markings layouts, and vehicle tracking.

Our Kerry representative, Barry O’Donnell, alerted Diarmuid Reilly (senior engineer) to these accessibility difficulties, but this made no difference.

The following observations are based on the incomplete information we have been given (in violation of our rights of equal access). Under the CRPD, the onus is on the Council to seek out our expert opinion at the concept stage of any design, rather than leave it up to us to struggle with inaccessible documentation when we’ve been alerted to the proposal by a member somewhere down the line.

The onus is also on Kerry Coco to provide detailed answers to our questions and issues (GC7, para. 23).

From what we can gather from the incomplete/inaccessible information, the following are among the proposals/consequences of the Part 3.

There are some pinch points on Bridge Lane (taxi rank, Citizens advice) and approaching Lower Rock Street (Kirby’s Brogue Inn).

We also understand the existing perimiter wall around the Garda Station will be removed (Currently this area has a footpath with
kerbs).

We understand a tactile guidance strip will be used to delineate between the road and the footpath.

Lower Castle Street (extending from the top of Denny Street) – narrowing of street to increase footpath widths, bicycle parking etc.

Shared Space

The major area of concern for VVI is shared space on the New Road (Garda Station) which deviates to the Island of Geese on the left and Bridge Lane (Taxi Rank, Citizens Advice Bureau) on the right. This area leads up to Lower Rock Street (Ray’s Loaded Lunches) passing the busy Rock Street Post Office en route.

There should be no shared space in areas where there is vehicular traffic. So, kerbs should be maintained, and, indeed, we recommend that these dished kerbs be raised to 125mm, but certainly, at no stage be allowed to go below 60mm (the minimum height for them to be recognised by a guide dog). Without adequate kerbs, guide dogs will walk out in front of traffic, including cyclists. For minimum heights for guide dog use, see report by Guide Dogs UK (2009, 2012).

Similarly, long-cane users need to have a safe zone where they know they will be safe from traffic (including cyclists). Our members cannot use eye contact to communicate with traffic, and especially with the increased useage of e-vehicles, it is more likely, with shared space, that blind or partially sighted people will step out in front of traffic (inadvertently).

For research into the dangers of shared space to blind and partially sighted pedestrians in an Irish context, see the TrinityHaus Report into Shared Surfaces (2011), and for Britain (in a very similar context), see the Holmes Report (2015).

Raised crossing points at Pedestrian and Zebra Crossings

Raised or level crossings cause Blind and partially sighted pedestrians to veer off course, potentially loose their balance (twist their ankle) etc as well as removing the dished paving cue.

Rumble strips which are used before roundabouts are very effective and could be used as an alternative to slow down traffic.

Bicycle parking

To reduce street clutter and eliminate unnecessary injury, we suggest bicycle parking stands be on the road (occupying former parking spaces) as Dublin City Council have done in St. Stephen’s Green, Hume Street etc.

Consideration should also be given to allocating a portion of town centre multi-storey car parks for secure bicycle parking. Dublin City Council have done this in Drury Street.

Pedestrian crossings

Tactile paving should extend the width of the path to the building line. Pedestrian crossing buildout (eliminating the need to use relief islands) are welcome as they will reduce the time needed to cross the
road.

Related Hazzards

Phase 2 of part 8 urban realm upgrade works down Russell Street and Bridge Street are currently underway.

These are very narrow streets with pinch points.

As far as we know, a tactile guidance strip is being used to delineate between the footpath and the road.

The efficacy of tactile guidance strips are questionable even in their original setting, however, they are wholly inadequate as boundary markers. Where streets/roads are too narrow for wheelchair-accessible kerbed footways, in close consultation with DPOs (such as VVI), we recommend the use of high definition corduroy strips to delineate the carriageway from the footway.

Conclusion

VVI is recognised by the State (under international law), as a DPO. This means we get priority in consultations. An analogy is that of a 999 submissions thinking that a proposed bridge design is wonderful, but one, who happens to be the civil engineer, says it is dangerous, and is likely to collapse within six months etc. So, our perspectives are not to be aggregated, but treated with the seriousness given to us by law.

Shared space is wholly unsuitable for vulnerable pedestrians, and especially those who are blind or partially sighted. Visually impaired have rights of equal and safe access to their environment and community, and this right needs to be reflected in responsible planning that adheres to the principles of Universal Design. DMURS (2019, 28) says that pedestrians are top of the road-users’ hierarchy, but this doesn’t just mean giving pedestrians free reign everywhere. Responsible planning provides vulnerable pedestrians, in particular, with contiguous areas where they can feel as safe as houses.

Categories
Submissions & observations

Visually Impaired pupils left behind in covid measures, says Féach report

Introduction from VVI

Féach is Ireland’s support group for parents of visually impaired children, and can be found at http://www.feach.ie

In May, 2020, Féach conducted research into how blind or partially sighted children were coping and being supported in the emergency educational measures, and the picture was disquieting. Below is Féach’s description of the results, and conclusion aimed at school returns this autumn, as submitted in April 2021 to the State’s consultation on its draft report into its compliance with the Convention on the Rights of People with Disabilities.

Many thanks and regards

Robbie
1 of VVI


Féach logo

The Implications of Covid-19 on the Education of Pupils who are Blind and Visually Impaired

Blind & Visually Impaired Students’ Experience of Remote Learning During Covid 19 Pandemic School Closure

ABOUT FÉACH

Féach is a voluntary organisation set up in the 1980’s to support parents and families of blind and visually impaired children. We are primarily a support group, however as a result of the shortcomings in the services available to our children; we have been involved in lobbying varying Government agencies on their behalf.

We successfully campaigned for free travel and companion passes for Blind and Visually Impaired children. We were instrumental in the setting up of the National Braille and Large Print Production Centre (now Reading Services), which is located in the grounds of ChildVision, Drumcondra, Dublin 9.

INTRODUCTION

In March 2020, the World Health Organisation (WHO) declared the outbreak of COVID19, as a pandemic, due to its rapid spread around the world. Ireland, took action and put in place plans to slow the spread of the COVID-19 virus. One such action, announced on March 12th was to close all schools in Ireland. On May 1st, the Government announced a ‘roadmap’ to opening Ireland up again, which indicates that schools will not reopen until September at the very earliest and even then, only 1-2 days a week/at a reduced attendance/capacity (1).

Throughout this time the Department of Education and Skills (DES) has been silent on the learning support needs of children who are Blind/Visually Impaired until June 12th 2020. There has been no guidance from the DES on the provision of resource teaching remotely. Our children have lost months of the weekly 1:1 teaching they normally receive during resource hours. The additional skills they need such as Braille and Assistive Technology have not been addressed. The NCSE who oversee the Visiting Teacher service for Young People who are Blind/Visually Impaired have issued no guidelines for the role of Visiting Teachers under remote learning conditions.

As happy as we are with the inclusion of Blind and severely Visually Impaired children in primary school in the new Summer Provision, we cannot comprehend why blind/vi in post primary have been excluded. We also cannot forget the delay in this help being offered to our children. It is hugely important that these students get the correct help this summer and on their return to school in September

In response to a high number of concerns from parents, Féach conducted a survey from May 18th to May 22nd on the experience of Blind/Visually Impaired Students’ of remote learning. The response was huge and swift; a reflection of the stress parents were under as they struggled to make the material being sent home accessible to their children. In total, 78% of our members responded to the survey. The responses set out the educational supports children have received since school closure;, the barriers they have faced and the support needed to/ required to ease children back into school after such a long absence.

Government published roadmap to ease Covid 19 restrictions and reopen Ireland’s economy and society, accessed at www.merrionstreet.ie

THE EXPERIENCE TO DATE

Lack of VI specific/differentiated work
On March 12th, teachers, pupils and parents were thrown into a unique situation with the almost immediate closing of schools. Parents were advised to support their children’s learning at home. Teachers were told to send work home with their students (in some cases we know of, this did not happen) and to immediately prepare for a situation they had never encountered before.

While homeschooling has been challenging for most parents, it presents unique challenges when the child is blind/visually impaired. Our children require significant adaptations to make learning materials accessible. So not only have our parents had to contend with accessing and downloading a range of resources, they have had to struggle with making these accessible for someone with limited or no vision. In addition, the extra skills so important for independence, have largely been ignored these past months. Braille, screen readers, orientation and mobility (cane training), listening skills and other Individual Support Plan goals have been omitted from consideration during remote learning.

Our survey revealed that remote learning is not working well for most/a large number of students who are blind/visually impaired. Most parents do not have the specialised knowledge of Braille or assistive technology to help their children. (Many teachers seem not to have considered the unique access needs of their blind/visually impaired student when setting work for home.

LACK OF INDIVIDUALISED CONTACT FROM CLASS TEACHER

Contact from Class teachers graph
Contact from class teacher
Made individual contact 42%
Made no individual contact 58%

Only 42% of parents had received any contact from the class teacher to discuss the specific needs of their blind/visually impaired child.

When contact was initiated by the parent, the response was ‘don’t worry, they’ll catch up next year…they can omit that part of the homework’, rather than any attempt to make the material accessible. This is a worrying response of ‘lowering the bar’ for the student with a disability instead of striving to support equal access to the curriculum content.

How was contact made graph
How was contact made
Text/WhatsApp 25 (22.3%)
Phone 59 (52.7%)
Email 77 (68.8%)
Post 5 (4.5%)
In Person 11 (9.8%)

When contact has been made by the class teacher, the majority of contact (69%) has been made by email. With no personal interaction with the parent or student phone calls or video calls would have been preferable. This type of contact lacks clarity and clear guidance, often with no modification of the materials needed or consideration of the additional learning targets/individual goals of the student’s support plan.

35% of parents felt that the contact they had received from their class teacher was insufficient.

Visiting teacher contact graph
Visiting teacher contact
Some contact 42%
No contact 58%

LACK OF CONTACT FROM VISITING TEACHER

Guidance from the NCSE is very poor with 58% of parents reporting no contact from their child’s Visiting Teacher.

The Visiting Teacher service should be the liaison between school and child, advising the school on exactly how to support a student is part of their remit. As 58% did not contact their students to know how they were doing, this support was not given. Parents were left to muddle through alone. Clearly many schools struggled with this new system which is understandable, however the liaison between the Visiting Teacher and the schools was also very poor. The Visiting Teacher gave very little guidance to schools on how best to support Visually Impaired students at home.

For a significant amount of families, home education is not working for a variety of reasons. The Department of Education and Skills (DES) must carefully examine how it is supporting families of children with disabilities at this time. While many students and their families have been under stress, we feel the additional needs of students with disabilities have been overlooked. Our children need individualised support to access the curriculum and they have additional learning goals if they are to learn to live independently. June 12th, three months into the lockdown, was the first communication from DES which mentioned special needs or blind/visually impaired students.

Nature and frequency of VT graph
Nature and frequency of VT
Excellent 18%
Sufficient 30%
Insufficient 52%

How was VT contact made graph
How was VT contact made
In Person 0.9%
Post 9.2%
Email 48.7%
Phone 59.2%
Text 25%

PARENTS EXPERIENCE WITH VT’S

  • VT has not been in touch with school to guide them on how they should support him and only contacted me by phone 7 weeks in, despite the fact that he is a state exam year student. I feel totally abandoned by the Educational system. The only support agency who offered any support was NCBI – with personal contact, technical support and practical videos. This is not even within their remit. Sorry rant over but to say I feel let down is a total understatement.
  • I have been very disappointed that in over 2 months neither VT for VI and D/HI have made contact
  • Only one email from VT with link to Braille resources. No input at all. I emailed over a week ago to say device not working or charging (this has been ongoing since Feb) nothing done as yet
  • I find it unbelievable that the visiting teacher has not been in contact with us and that I have a child with a vi that is about to head into 2nd year with no technology intervention. He has large print books and these were only made available to him in 6th class. Only started typing lessons in 6th class.Visiting teacher appears to be afraid of technology. What exactly is the job description of the visiting teacher. Surely now during the time of home schooling we should have at least received a phone call from Visiting Teacher
  • I am disappointed we have had no contact at all from Visiting Teacher. I am also disappointed that I found out from my 5 year old that he was using an iPad linked to the whiteboard before school closed. This was set up by VT but I was never informed about it by her or the school. I do not know if my son needs larger print books for next year. I feel our school and teacher are doing their best but the service from the Visiting Teacher has been very lacking to sat the least
  • I emailed the principal regarding lack of face to face online teaching & got no reply.
  • Have emailed the school asking can SNA’s help with subjects, have received no reply
  • I contacted my VT about my daughters computer not working and am still waiting on her to come back…
  • We have had very little input if any from her VT infact she hasn’t been seen by her visiting teacher in almost 3 years only for NBCI we would be totally lost.
  • The general opinion from parents that I have contact with is that Visiting Teacher service is very poor in County XXXXX compared to other areas
  • My child gets very little support from the VT. The visiting teacher has not made any contact with me during this academic year. it is very disappointing
  • My son’s VT retired last year and we have had absolutely no contact or information regarding her replacement since!!

Lack of Resource Teaching Contact

Only 60 % of students heard from their Resource Teacher with nearly 40% having had no contact at all from their child’s resource teacher since the school closure. While ⅔ felt the level of contact was satisfactory, ⅓ of families felt it was insufficient.

Has your resource teacher been in touch graph
Has your resource teacher been in touch?
Yes 60.4%
No 39.6%

Frequency and nature of contact graph
Has would you describe the frequency and nature of this contact?
Excellent 18.3%
Sufficient 29.8%
Insufficient 51.9%

How was resource teacher contact made graph
How was Resource Teacher contact made
In Person 9.2%
Post 13.3%
Email 66.3%
Phone 49%
Text/WhatsApp 19.4%

TECHNOLOGY – The cornerstone of Visually Impaired learning

At present the only method for teachers to contact their students is via technology. Most families have access to some form of technology such as a laptop, smartphone or iPad however some have no access to any technology at all for schoolwork, especially the assistive/adapted technology needed for Visually Impaired users. For some students their devices were not sent home and parents have not been allowed to collect them. For others there has been no support in their use. Many use highly specialised devices such as BrailleNotes with Perkins keyboards. It is impossible for parents to use these without training or support. So they are unable to teach these skills to their child or to help when the device does not work.

Technology is so important for Visually Impaired children. These children need to be supported immediately by the DES with technology training or access to in person s teaching as they have no access to education at present.

PARENTS EXPERIENCE WITH THECHNOLOGY

  • I have to change lessons because emails and links are not suitable so I must work ahead of his lessons as the emails, work, links are not suitable. I’ve had to learn how to change settings on laptop to allow zoom and I read to him when it’s not suitable. If he was expected to do this himself if I was doing a different job it would be a joke.
  • I asked his teacher could I have my child’s laptop, he said he would ask but have not heard a reply and that was weeks ago, his laptop was set up with so many features that would have been helpful, also my child had to learn his way around a different device. I am not great on IT so I have had to spend hours assisting him. Teachers are sending out work but they don’t think about children that would have any visual difficulties.
  • My daughter has had difficulty seeing the work sent home via the Seesaw app because our iPad is 9 years old and we can’t update to the latest version of Seesaw. As some of her worksheets are created using the newer version of Seesaw she can’t complete the work on the iPad. We look at it on the iPhone – but the text on the phone is too small for her to see even when we zoom in. Have told the class teacher the difficulty we are having and the reason for the problem but it has been shrugged off. No solution forthcoming.
  • I am left trying to figure out how my child can use a laptop when he can’t even see the screen without holding it to his face. Things have to change. I don’t understand why some kids seem to have lots of devices to use for school and have been given the opportunity to trial them and see what works and others get nothing. In my opinion this Visiting Teacher is setting my child up for failure instead of enabling him with independence in the educational system.
  • My son is in 3rd class. He used Connect 12 and we had to appeal the school policy to allow for his technology to be allowed home. This was granted but only after 8 weeks without it which was a shame. Since receiving it he has begun learning how to touch type daily.

Inaccessiblity of Materials

Almost half (49.7%) of all Visually Impaired/Blind students surveyed have not received adapted materials from the school or in some cases access to their large print school books at all. Visually Impaired children cannot work with the standard text books on the curriculum Many of the e-textbooks made available by publishers for free during the pandemic are not easy to read for people with visual impairments. Magnification reduces the clarity of image files. Screen magnifiers do not work well with most web pages and most of the e-textbooks are not formatted for screen readers. Some of the apps used for school-home communication, such as Aladdin etc are not compatible with assistive technology.

This has resulted in students trying to learn from home without books. This is simply impossible. For these students that is 3 months of education gone. They will struggle hugely to catch up when they go back if this gap is not bridged in the meantime.

68.3% feel their Visually Impaired child is struggling more than their non Visually Imapired Child

Nearly half stated their child was struggling academically and emotionally

Aspects where the child is falling behind graph
Aspects where the child is falling behind
Not falling behind 28%
With skills (e.g. fine motor, writing, etc) 37.2%
Emotionally 45.7%
Academically 44.5%

PARENTS EXPERIENCES WITH INACCESSIBILITY

  • Has missed 3 months of subjects that he needs support in – Science, Maths, Business, French. He will have missed some very key lessons and will probably have to drop some Honours subjects. I asked for 1 maths resource a week and was told it was not possible as she had to mind her child!
  • I feel no effort is being made to solve what is probably not a difficult problem to solve. I am her mum – not her teacher. But I feel I am being asked to do the job the teacher should be doing (differentiating the work slightly, looking for solutions) when my daughter’s needs aren’t being thought about when worksheets are being created
  • He is supposed to be accessing classes within the mainstream but with additional support for his VI and physical disabilities (physical disabilities, normal intellect). However, his mainstream teacher hasn’t been in touch at all and when I contacted her she said that she is devising his lesson plans jointly with his special class teacher every fortnight. But when I said this to the special class teacher she said that she hadn’t been in touch and didn’t know what the mainstream class were doing. His special class teacher and SNAs do a 30 minute zoom session with him everyday 11-11.30am which gives his morning structure that he so badly needs. But it is so difficult to keep him engaged with school work overall and I do worry that the books that are read over zoom he can’t see them etc.
  • He was sent home with one reader book and one maths workbook at the start of the lockdown and that’s it since. His special class teacher said that she doesn’t use the books anyway with him in class much because the print is wrong for him. His writing is difficult given his CVI and physical disabilities so he was learning to type in school so this is also something I have to do every day with him on top of his writing, zoom class, reading, maths etc. It’s an awful lot.
  • I don’t think my child is falling behind academically but I do think she is missing out on the resource teaching that she would get in school
  • As the day is nearly complete and my daughter is starting to get tired from the days going on and with Congenital Nystagmus and optic nerve Hypoplasia tiredness affects the vision therefore it’s harder for her to complete same

SOLUTIONS AND POSITIVE EXPERIENCES

Supports that may be beneficial to VI children graph
Supports that may be beneficial to VI children while learning at home
Email lesson plans 20.9%
Phone calls 16.5%
Links to online resources 25.3%
Class group interactive video lessons 44.3%
Interactive 1:1 video lessons 55.1%
In person teaching at school or at home 48.1%
  • The Summer Programme that the government has now included Blind and visually impaired children in will need guidance from VT’s to create Lesson Plans for tutors and SNA’s to use during the provision as many children will be getting a home tutor with little experience in VI.
  • Some form of home tuition and direct contact with the teacher are the highest ranked supports parents believe their child requires going forward for the new school year.
  • When teaching can not be done in person, remote lessons must be 1:1 for our children. (This can be provided by resource teacher, class teacher or visiting teacher but they need this support to catch up on materials they can’t see and to learn the vital additional skills they need to learn in Braille and technology.).
  • For a cohort of children with disabilities, direct access to teachers, SNAs and a structured lesson plan derived from the IEP (Student Support Plan Plus) is what is required.
  • While this may not be in line with public health guidelines at present, these children need to be top of the priority list of children returning to school.
  • When children are to return to school the DES must ensure that children with disabilities are not left behind
  • ChildVision and NCBI have been great help to the parents and children during this time, mainstream schools and the DES have not been in our experience
  • Post Primary Students are not included in the Government’s plans for the summer and this needs to addressed

PARENTS EXPERIENCE

  • He needs 1:1 help with different areas of school work, he wouldn’t engage well from video conferencing as a method of teaching if it was an option.
  • My VT has been in touch and has offered to help with issues with his technology and I have found my school very good. He has all his large print books home so we work from them. Luckily he is only in 4th class so I can help him with all of his work.
  • Communication via phone or video call 1:1 possibly would benefit
  • I am very happy with our school. They are in constant contact with XXXX and myself to see how we are getting on. Lessons are sent in weekly along with feedback from Seesaw app and phone calls. Her main teacher, support teacher and SNA and vice principal have been excellent.
  • My school has been more than supportive during Covid 19 with setting work via school email, Microsoft teams and one in particular livestream. I feel they have done their best and more. Couldn’t have asked for more to be honest.

CONCLUSION

Come September we need to see Visually Impaired and Blind children prioritised by the DES their individual needs recognised by schools. The children will need 1:1 teaching either in person or via video calls. If schools will be phasing students back into the classroom, our children need to be considered first so they do not lose any more resource hours or continue to struggle to access their textbooks and worksheets

Categories
Submissions & observations

Observations on Proposed Pedestrianisation of Merrion Row, Dublin 2

Made by Voice of Vision Impairment (30 Apr 2021)

Introduction

1. Prioritisation of DPOs in Consultations

As a DPO under the Convention on the Rights of People with Disabilities, VVI needs to be prioritised in Dublin City Council’s (DCC) consultations on this proposal, and our concerns answered in detail, publicly as well as directly to us. Also, as a DPO, DCC needs to have sought our advice on this project from the concept stage of the plan. This, of course, did not happen.

By law, safety and rights come before perceived popularity.

Inaccessibility Issues Regarding the Proposal.

2. Inaccessible Information

The images in the proposal are not described, full stop, let alone adequately described for blind readers. This hampers our participation in the consultation process, and violates the EU Web Accessibility Directive (2016), and the Convention on the Rights of People with Disabilities (Article 4.3 as clarified by General Comment 7).

Accessibility/Safety Issues

3. Delineation

The delineation of the new pedestrianised spaces from the single remaining lane of traffic is unclear… i.e., we don’t actually know what it is because of the inaccessibility of the images; and also, it is likely to be inadequate, since a 125mm flat-facing kerb is required to segregate pedestrians from traffic – for safety of long cane users and guide-dog users, respectively.

4. Narrower Safe Footways

If the above point has not been catered for, then it means that blind pedestrians will be limited to a a very narrow safe space, if, indeed, they have any safe space remaining at all.

5. Vehicular Access

Many blind people rely on access by car – be it private transport, or taxi, and the reduction of road-space from three to one lanes means that such access will be more difficult.

For example, a blind person wishing to get a taxi to access the post office or the bank may not be set down close enough to where they need to go, putting them in harm’s way (given the above points 3 and 4).

6. Bus Diversion

The diversion of the 44 from Hume Street to Pembroke Street and Leeson Street will cause confusion and a lot of hard retraining.

7. Segregation of dining areas

The canvas/tarpaulin screens on steel poles are not fit for purpose when it comes to protecting long cane users, since the long cane is liable to snag in the gap between the canvas and the ground, and cause injury to the cane-user.

8. Partial Pedestrianisation

What is being proposed, of course, is partial pedestrianisation, depending on the time of day. This is confusing for the blind pedestrian, who will find the street safe to access in the current system, and find it dangerous in the semi-pedestrianised state (with one lane). This also means that they will be effectively excluded from the street during the peak dining hours. This has Human Rights ramifications, and is probably illegal.

9. Bollards

Bollards are a hazard for long-cane users. Safer alternatives would have been proposed by VVI were we to have been consulted in time.

10. General

10.1. Encroachment of private business on public realm.
Apart from the worrying aspect of private enterprise being sponsored by the State to annex public realm, there are two related issues:

10.2. Where does the insurance liability lie, for example, if a long-cane-user injures themselves by being scalded by someone bringing a hot drink to the on-street dining area, or if they hurt themselves on the inadequate screens?

10.3. What is the plan to reclaim this public realm for the public once the supposed revitalisation stage is over?

11. Environmental Impact Statement

With such a large diversion of traffic from Stephen’s Green East, surely an Environmental Impact Statement is required? For instance, on Pembroke Street, Leeson Street, Ely Place, Merrion Square,

12. Bus Connects Presumption

Without prejudice to the foregoing, DCC’s final statement that Bus Connects will mean that there will be no buses on Merrion Row from 2024, anyway, presupposes the outcome of a democratic process of planning which has not yet been completed. It reflects wishful thinking, and a nod to the maxim that “if we define things as real, then they become real in their consequences.”

Categories
Newsletter

Have your say about disability rights in Ireland

We’d like to take this opportunity to remind anyone who is blind or partially sighted that they are welcome to become a member of Voice of Vision Impairment, simply by emailing info@vvi.ie with your name and local authority area (if you know it). Membership has no obligations, but lots of benefits.

VVI is a founding member of the DPO Coalition. The DPO Coalition is preparing its first ever Shadow Report to the UN Committee on the Convention on the Rights of Persons with Disabilities (CRPD).

The Coalition wants to know about your experiences and opinion on what you think of the Convention on the Rights of Persons with Disabilities (CRPD) and how it relates to your life. This survey is an opportunity for you to give feedback about your rights.

Your feedback will help the DPO Coalition write the report to the UN Committee about how well the Irish Government is implementing the Convention on the Rights of Persons with Disabilities (CRPD).

The survey is split into three sections. Section 1 is information about your profile, section 2 is about your experiences and section 3 is about what you think of the Convention on the Rights of Persons with Disabilities.

In section 2 Quality of Life the survey asks questions about different areas of life and experiences of discrimination and barriers to participation.

  • Discrimination
  • Supports
  • Healthcare
  • Education and Training
  • Work and Employment
  • Safety from abuse
  • Choosing where to live
  • Transport
  • Social participation
  • Participation in public and political life
  • Justice

The survey can be completed by clicking on the following link:
https://www.surveymonkey.com/r/Q3VNPSM

The deadline to finish the survey is 12.00pm on 8th April 2021.

FAQs on this type of survey

Do I have to fill in the whole survey?

No, you can pick the questions that are important to you. You can fill in as many questions as you want and you can skip ones that you do not want to answer by pressing the green “Next” button.

Can I add more information later?

Yes, for example, you can answer some questions one day and other questions the next day:

  • Start the survey and answer the questions you can finish on that day.
  • To save your answers on a page make sure you click the green “Next” button or your answers will not be saved.
  • You can close the survey on any page when you are ready to finish on that day.
  • You can use the same link you can open the survey again at a later time.
  • The survey will open on the last page you finished, and you can continue answering questions.
Categories
Newsletter

Newsletter of Voice of Vision Impairment (VVI) – July, 2020 to February, 2021

Below is a brief summary of some of our key (but background) moments which don’t necessarily make it onto the usual website of info@vvi.ie fare.

New Rep

January 2021 got off to a great start, with VVI gaining a new member of our reps team; that is, Ed Harper, based in west Cork, who has an outstanding record in rights-based campaigning, and we count ourselves very lucky to have the benefit of his wisdom.

David Nestor, our second Meath rep, has stepped back from much of his PPN role in order to concentrate on recovering from a serious illness, and we all keenly wish David a very speedy and long-lasting recovery. Many thanks to Gillian Stafford for temporarily, but very ably, stepping into David’s shoes as VVI rep on Meath PPN.

Irish Rail

In June 2020, the long and hard work by VVI’s Barry O’Donnell, campaigning for the provision of mobile phone numbers for commuter passengers wanting to contact “hub stations” for assistance, finally came to fruition. Some creases are still to be ironed out.

The mobile numbers are available at:
https://www.irishrail.ie/travel-information/accessibility-onboard-trains/access-dart-northern-commuter

Barry’s long campaign for better audio signage on Luas regarding dual destinations (e.g., Busaras or the Point), is also making some headway, with noticeable improvements on some lines. Ultimately, we push for platform announcements.

Prisoners with a Visual Impairment

VVI was proud to have attended a conference of civil society organisations with an active interest in The Optional Protocol to the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT), and In particular, the National Preventive Mechanism (NPM) designed to independently monitor the conditions of Inmates in Irish prisons, as part of the UN Convention Against Torture (UNCAT0. VVI has an ongoing concern for the conditions of prisoners with visual impairments, and we look forward to having the resources and supports to be able to play our part in the NPM.

Bus Éireann

In August, 2020, VVI joined Bus Éireann’s Disabled User Group, with Barry O’Donnell as our talented representative. VVI is now represented on the Disabled User Groups of Irish Rail, Dublin Bus, and Luas, as well as Bus Éireann.

DPC Network

VVI is a founding member of the DPO Coalition, and in September, 2020, the Coalition became one of the five funded members of the Disability Participation and Consultation Network (DPC Network). In January, VVI officially became a member of the Network in its own right. The Network is the State’s effort at box-ticking Article 4.3 of the Convention on the Rights of People with Disabilities (CRPD). The Network’s start has been inauspicious, and we have concerns that it might be a white elephant, but all this can change if the State finally formally acknowledges the prioritisation of DPOs in consultations, as guaranteed under the CRPD.

DPO Coalition’s Shadow Report

On Wednesday evening, February 10th, eight VVI members, in our own break-out room, participated in the DPO Coalitions focus-group stage of research for the purposes of its shadow report on the State’s implementation of the CRPD, to be published later in the year. Themes covered included health, education, employment, and independent living. The meeting lasted for more than two hours, but genuinely, the feedback has been very positive, and it has given us a renewed confidence in Zoom in facilitating larger meetings of VVI.

Numbers were capped at eight, and so, we had not enough places to meet the demand. However, no-one will be left behind in having their voice count, and anyone who has not so far had a chance to take part, will have a chance in the next researches phases.

VVI’s own shadow report will focus on Article 4.3 of the CRPD, which is a crucial, but macro/legal component of the Convention. Without Article 4.3 being implemented, nothing else can follow. VVI continues to use our position as a national DPO to represent people with a visual impairment in our campaigning, on a daily basis, for accessible policies and design, based on the lived experience of our members, and this focus is always at the core of our overall project.

Regarding other aspects of disability, other DPO Coalition members are inviting outside participation in their own research projects.

AsIAm, the national DPO focussing on autism, is looking for written or recorded submissions regarding its shadow report on the CRPD, and is arranging two Zoom meetings, the first to be held on March 1st, with Alistair de Gaetano.

More information at
https://asiam.ie/webinar-education-rights-uncrpd/

The second is a Healthcare webinar on Wednesday 3rd March from 7-9., with Dr. Mary Doherty, an autistic doctor and researcher. She has co-written research on the barriers to Our link to the first talk with Alistair on Monday 1st March from 7-9 is now live:

More information at https://www.asiam.ie

Disabled Women Ireland (DWI), are inviting all women and non-binary people over the age of 18 who identify, sensory impairment, or mental health condition, as having a disability, to join them in responding to the State’s report on the CRPD. Accordingly, DWI invites relevant parties to three Zoom meetings on any of these dates:

  • Wednesday, March 3rd, 3-5pm
  • Saturday, March 6th, 11am-11pm
  • Monday March 8th, International Womens Day, 7-9pm.

To register, email disabledwomenireland@gmail.com by March 1st, with your name, date of the discussion you’d like to attend, and which topics you would like to discuss, your specific access requirements, if any. Written submissions are also welcome.

More details on www.disabledwomenireland.org

Right to Vote

In October, VVI’s Robbie Sinnott was a guest-speaker at the 10th birthday special webinar celebration of the Public Interest Law Alliance (PILA). It was through PILA that Robbie was able to take a case to the High Court in order to win the right to vote for people with a severe visual impairment – a case which he won in 2017. The theme of the webinar was ‘using the law to obtain rights’, a theme very close to VVI’s heart. VVI continues to work with the Dept. of Housing in order to make voting accessible to people with a severe visual impairment. The accessibility gap is still massive. This year will see the inauguration of a new election or voting commission, and we are hoping things will improve in the meantime, and afterwards.

Web Help

In November, Colin Eyre, from Iconology.ie, kindly agreed to offer pro bono services in helping with our website and content. He joins the brilliant Trevor Lyons who has been managing the website by himself up until now. We should say that the site is still very much under construction, and any shortcomings are not a result of Colin’s expertise, but of our own testing and feedback mechanisms which are still ongoing.

Milestone in Public Sector Equality Duty

Under the Human Rights and Equality Commission Act (2014), every statutory body must take steps to build the protection of the rights of minorities into its framework. Fulfilment of this obligation has generally been zero, or close to zero, since 2014. VVI is pleased to say that it was part of the first consultation of a Local Authority on implementation of its Public Sector Duty. In January, 2021, we participated in a consultative meeting with Meath County Council on its plans to take the Public Sector Duty obligations seriously. More information on the Public Sector Duty can be found at www.ihrec.ie

Call for Members

Membership of VVI is open to anyone in Ireland who has a visual impairment, and all are welcome, unconditionally (apart from the condition of being visually impaired). To join us, please write to info@vvi.ie, and you will be sent your membership number.It’s as easy as that. If you are already a member, please share our invitation to and with anyone you know with a visual impairment.

Issues

VVI reps are tirelessly campaigning on many fronts (most of which are not mentioned in this newsletter). We depend on the pool of expertise of our members. If you are a member of VVI, and if something is a significant problem for you, please let us know, and we will work on the issue in an inclusive way, and make sure that the perspective is counted in our policies and position papers, in line with our Constitution. Again, please contact info@vvi.ie.

Reminder

Anyone who wishes to take part in the DPO Coalition Consultation on your lived experience and issues relating to your visual impairment, which takes place at 7-9pm on Wednesday February 10th, please contact info@vvi.ie before noon on Tuesday. Your voice is not only welcome, it makes us who we are.

Categories
Disability

What is Disability?

There are two competing concepts of disability. To sum them up, the Social Model uses the term “disabled people,” because we are disabled by the system. The Medical Model uses “People with Disabilities,” as if our impairments are the cause of the discrimination against us and ultimately of our disability.

1. The Medical Model

In short, the medical model individualises and privatises disability, and institutionalises the problem. It sees disability as being an individual trait or condition of a person that needs to be treated or controlled. A person’s impairment is seen as the primary problem, and quite often the treatment involves training their behaviour in order to adjust as best they can to traditional social norms, and ‘managing their expectations’, so that they don’t lose the run of themselves and expect everyday equality and recognition of the legitimacy of their own lived experiences.

1.1. Language

The Medical Model is encapsulated in the phrase “people with disabilities” (often PWDs), which confuses a person’s having an impairment with their being disabled by designs, policies, systems, and society in general. Disability is treated like a disease, such as AIDS, or herpes, that someone is unfortunate enough to have contracted or been born with, rather than treating disability as a set of social barriers.

It is thus embarrassing, and somewhat unfortunate, that the phrase “people with disabilities” is given such prominence in the UN Convention on the Rights of People with Disabilities. It makes as much sense to say that someone of colour is “with racism” or someone who identifies as LGBTQIA is “with homophobia,” etc. That is to say, just like racism, sexism, homophobia, etc., disability is something that needs to be eliminated, not perpetuated, and even celebrated, as a way of categorising vast diverse swathes of humanity.

The “International Day of People with Disabilities” is an example of this attempted celebration of disability as an identity. It is a bit like having an International Day for People with Inherent Inequality,” or an “International Day of Second Class Citizens,” where the world is encouraged to think about such unfortunates for a day, and maybe think of ways in which their plight might be in some way lessened on the individual level; or more likely, just think of them, possibly with pity, and be thankful that it isn’t yourself.

1.2. Supercrip

Just as the supposed answers are sometimes reduced to an individual or localised level, In the medical model, the individual disabled person is often singled out and celebrated, especially if they have achieved a goal way beyond what society expects of them.

Such feted heroes almost always are celebrated for having achieved something of zero social consequence, except that they might be a role model ‘especially for the rest of us, who thought we had problems until we see what some others have to put up with’. Such heroes, apart from their standout feats, are supposed to inspire individual optimism, but are strictly mute on the social aspects of the discrimination they face on a daily basis. If anything, they allow themselves to be co-opted by the disability industry.

The “supercrip” depiction feeds its way into media representations, such as film, and perpetuates social stereotypes, but it has a more insidious and subjugating effect for the vast majority of disabled people: it demoralises those who are struggling with daily institutionalised disablism, and implicitly undermines their lived experience – putting the entire problem of coping right back on the individual level. Furthermore, it gives weight to the already loud voice of the elite disabled, while further drowning out the concerns of the vast majority who are not being heard, or not being listened to.

The message is, “if x can do it, why can’t you?! In such a way is disability internalised, and the disabled individual is encouraged to blame themselves for the institutionalised discrimination they face daily.

1.3. Una Voce

Apart from high-achieving exemplars being singled out, disabled people find themselves being segregated into faux communities, all beneath an overarching umbrella of a cumbaya-like pan-disability unity which we are all supposed to aspire to. However, with the possible exception of the Deaf Community, people with particular impairments don’t necessarily share cultural or any other affinities with people with similar impairments, apart from suffering similar types of discrimination at various times in their lives.

Even people with identical impairments, however, may have widely varying practical skills, coping skills, networking supports, etc., so if there is unity in discrimination even on this narrow scale, it is unity in the loosest sense of the word in terms of what might be assumed to be a community based on adversity. People opposed to this false unity are accused of ‘siloing’ and being divisive.

1.4. The Disability Industry

The medical model has traditionally infantilised the disabled person, and has made them dependent on a charity-based disability industry, rather than having the State be made accountable for equal access to services and rights. The medical model makes the representation of the needs and understanding of disabled people the domain of non-disabled specialised “experts,” rather than letting disabled people speak for themselves.

Worse still, this non-disabled representation of the disabled is entirely dominated by the heavy hitters of the privatised, but heavily subsidised, disability industry, i.e., the institutionalised service-providers who necessarily have a “conflict of interest” (according to General Comment 7 of the Convention itself), when claiming to advocate on behalf of disabled people.

The disability industry is one of the few sectors in which such a practice is not only tolerated, but wholly facilitated by the various statutory structures of consultation and funding etc. Some will even co-opt people with impairments onto their boards, or use them as spokespeople, to add to their alibi or imply legitimacy in their advocacy, but if they are a service provider, the conflict of interest is undeniable.

1.5. Lobbying vs. Campaigning

Today, the medical model has a firm hold on all statutory decisions relating to disability in the Republic of Ireland, despite General Comment 7 (September, 2018), requiring this institutionalised stitch-up to be brought to an end. Those organisations with the best resourced representation, and their feet already under the decision-making tables, are primarily service-providers, so it will take a concerted effort to alter this chicken and egg impasse. To extend the metaphor, the established charities will not be the turkeys voting for Christmas. They will need a helping hand to vacate the advocacy space they currently, wrongly, occupy. The traditional charities even brazenly proclaim themselves to be “representative organisations.” A simple way of framing this situation is that service-providers necessarily “lobby,” while DPOs “campaign,” because we have no conflict of interest, and only want the realisation of our basic Human Rights.

1.6. Recap

Neither disability, nor even subgroups of disability, are causes of celebration. Rather, disability needs to be eliminated, not celebrated, and we cannot have equal rights until then. Social barriers need to be removed, and people with impairments accepted and allowed to participate as equals in their wider communities and society. The only means of doing this, according to the CRPD, is to recognise DPOs as being the voice of the disabled, i.e., not service-providers, and not non-disabled-led organisations.

2. The Social Model of Disability

The Social Model of Disability recognises that people are not born disabled, but rather, they are disabled by negligent design, policies, and decision-making. In other words, an individual may be born with or acquire an impairment, but it is society that creates the disability by allowing, and even actively propagating, barriers that lead to the social exclusion of people with impairments.

Disability is not something we have; disability is something done to us…we are actively being disabled by the ignorance of others, and that alone is what it means to be disabled, i.e., in the same way that someone might be said to be assaulted. As such, we are not “people with disabilities,” in the same way that we don’t speak of there being a category of “people with discrimination.”

2.1. For the Elimination of Disability

So, because disability is primarily caused by society, and not by nature, it is the responsibility of society (from the global to the local), to prevent the disabling of people…to prevent disability. An individual’s impairments may or may not be curable, but disability is a social ill that is totally curable in most cases, even if this means reconfiguring what have been traditionally accepted as indispensable convention or ideal.

2.2. Integration and Universal Design

The Social Model emphasises the rights of disabled people to have equal access to services and to be able to participate as equals in their societies. Rights, including rights to services, is incompatible with the charity/medical model of service-provision, not least because all services should be accessible on an integrated basis (i.e., as near as is possible to the same time and place for all service-users). So, instead of ghettoing service-provision for disabled people, the concept “universal design” must be utilised to make sure that people who are now disabled, become equal members of society, in practice and in perception.

2.3. Expertise and Lived Experience

The CRPD recognises that the experts in disability are disabled people, themselves, because of their own lived experience. It is for this reason that they, through their DPOs, need to be prioritised in all consultations on policy and design, etc. Denying the priority, or significance, or even validity, of lived experience by not recognising it as the expert voice for which it is, adds insult to injury, is dehumanising, and can be humiliating.

The social model of disability realises that the voice of the most marginalised and disabled is fundamental to the concept of universal design. Even the 99% does not have the right to deny the legitimacy and rights of the 1%.

3. Disabled Persons Organisations (a.k.a. Disabled Peoples Organisations)

In the Social Model, the primary experts in disability are those who are disabled, and they need to be prioritised in the formulation of Universal Design and any policies or decisions relating to disabled people – i.e., everything. To make things manageable, the UN Convention wisely lays down the notion of disabled people being represented through their “representative organisations,” which are run by disabled people, are primarily membered by disabled people, and which are not service-providers. The Social Model approach refers to these representative groups as Disabled Peoples Organisations (DPOs).

As noted above, the Convention on the Rights of People with Disabilities erroneously uses the Medical Model notions of disability being owned by the individual, rather than by the State or society. Similarly, what we know as DPOs, are referred to in General Comment 7 of the Convention as “organisations of people with disabilities,” and are distinguished from what we call non-DPOs (i.e., “organisations for people with disabilities” (General Comment 7.13).

4. Ongoing Impacts of Historical Legacy

In Ireland, there is a strong tradition and legacy of the service-providing charities being seen as the experts in disability management etc., and with their very strong brand-names, they are often the go-to people for the State and all other types of organisation, to find out anything about particular impairments or the disability norms in general.

Such service-providers cannot be, nor can they ever be, DPOs, by virtue of the intrinsic conflict of interests mentioned in General Comment 7 when it comes to service-provision and advocacy. Currently, also, the service-providers are led by non-disabled people, and are run (i.e., on boards) by mostly non-disabled people. Any confusion of the notion of “DPO” necessarily further disadvantages the real DPOs, and allows the non-DPOs to continue to imply, if not to claim outright, that they are also DPOs.

The distinction of DPO from non-DPO is at the very core of the Convention on the Rights of People with Disabilities (notwithstanding its Medical Model language). All other Articles are necessarily predicated on Article 4.3, since without consultation with the experts (DPOs) from the outset, no State can remotely understand what is meant by the rest of the document.

5. Simple Summary of Differences between DPOs and non DPOs:

5.1. “Of” versus “for”

DPOs are organisations “of” disabled people (i.e., membership, perspective etc.), whereas non-DPOs purport to be “for” disabled people (or “people with disabilities,” as they usually prefer to call us). This distinction between “of” and “for” is made in General Comment 7 of the UN Convention (General Comment 7.13).

5.2. Representative Function

Because a DPO cannot be a service-provider, the primary, if not the sole, function of a DPO is the representation of its members in explaining their needs, wishes, and rights to any or all relevant bodies (including statutory bodies, other civil society organisations, and commercial enterprises).

5.3. Members vs. Clients/Service-Users

Membership vs. clients/service-users: DPOs have members, non-DPOs (i.e., service-providers), have mainly clients and service users. The nearest thing they have to members are the trustees on their board (i.e., board-members). A DPO is comprised of its members, and these members make up the vast majority of personnel with anything to do with the organisation. At least an overwhelming majority of those members need to be disabled for the organisation to be a DPO. In contrast to a non-DPO, if a DPO has a board, that board is accountable to the wider membership, whereas, by definition, a non-DPO has no other members to be accountable to (if indeed it is accepted that trustee and member mean the same thing).

5.4. Leadership

Disabled-run and Disabled Led: A DPO has to be led and run by disabled people.

5.5. Rights vs. Charity Perspective

DPOs are likely to recognise the reality of the Social Model of disability, and reject the medical model. Therefore, there is a high probability that a DPO is necessarily rights-based, rather than accepting a charity model of service-provision.

5.6. The Language of Disability – “disabled people” versus “people with disabilities”

The recognition of the Social Model means that DPOs are likely to prefer the term “disabled people,” in recognition that we are disabled by society rather than our impairments. Hence, we call ourselves Disabled Peoples Organisations (DPOs). Non-DPOs belie their dependence on the Medical Model by the use of the term “people with disabilities.”

5.7. Language: “Campaigning” versus “Lobbying”

Because a DPO is not a service-provider, and as such has no conflict of interests in advocacy, a DPO “campaigns” decision-makers. By contrast, a non-DPO (usually a service-provider), necessarily has a conflict of interests in advocacy, and therefore “lobbies” decision-makers.

5.8. “Disability Sector”

In keeping with the language of an industry, non-DPOs tend to use the term “disability sector,” in recognition that there is a living to be made from the misfortune of the discrimination against others. Just as it would be offensive to speak of a “racist sector,” a “sexist sector,” or a homophobic sector,” it is equally offensive to speak of a “disability sector;” but that offence is surpassed by deference to the sector when it comes to prioritisation in consultations.