J Patrick Clarke
27 March 2017 Panel 2 - Awareness Raising - 14.00
‘Removing Stereotypes by Increasing Participation of Persons with Disabilities’
The European Union and 27 out of the 28 EU Member States have ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). This international human rights framework provides clear guidance to the EU and its Member States on how to consult and involve persons with disabilities through their representative organisations in all decision making processes.
As such, EDF provides disability-specific guidance to the policy makers and other relevant stakeholders to ensure accessible, meaningful and effective civil dialogue with persons with disabilities and their representative organisations.
This we believe is governed by 4 guiding principles
Principle # 1: The right to be consulted in decision-making
The involvement of persons with disabilities through their representative organisations lies at the heart of the CRPD, and is captured in the slogan of the disability movement ‘Nothing about us, without us’.
Article 4.3 of the CRPD states that “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 organisations”.
The CRPD Committee on a number of occasions has expressed its concerns about the insufficient participation of persons with disabilities and their representative organisations in the review and design of disability-related legislation and policies. In particular, the CRPD Committee urged States Parties to take effective measures to consult with and actively involve persons with disabilities, including children and women with disabilities, through their representative organisations in the planning, execution and monitoring of public decision-making processes at all levels and in particular in matters affecting them.
Principle # 2: The need for a transparent and open decision-making process
To ensure a transparent and open decision-making process, all relevant communication, information, meetings and its contents should be accessible to all persons with disabilities.
The CRPD Committee highlighted to the EU that not all the websites of the various EU institutions are fully implementing accessibility standards. The Committee was equally concerned about the lack of information in sign languages, Braille, augmentative and alternative communication, and other accessible means, modes and formats of communication for persons with disabilities, including easy-to-read format.
The CRPD Committee recommended the EU to take the necessary measures to ensure the full application of web accessibility standards to the websites of all EU institutions and to offer information in sign languages, Braille, augmentative and alternative communication, and other accessible means, modes and formats of communication for persons with disabilities, including easy-to-read, easy to understand formats, in official interactions.
The CRPD Committee has also highlighted at several occasions the need to give representative organisations of persons with disabilities reasonable and realistic timelines for providing their views in order to enable them to fulfil their role under article 4.3 of the CRPD.
Principle # 3: The need for a protective regulatory and financial framework for civil society organisations
As other civil society organisations in Europe, representative organisations of persons with disabilities at EU level and in the Member States face limited financial resources and are not able to independently monitor the actions of their State on the rights of persons with disabilities.
The CRPD Committee recommended to the EU to provide representative organisations of persons with disabilities with adequate funding in order to enable them to fulfil their role under article 4.3 of the CRPD.
Moreover, the EU should ensure long term capacity building support to increase the capacity of representative organisations of persons with disabilities in order to allow them to be meaningfully involved, participate as partners on an equal basis with others and deliver results in the development and implementation of the CRPD by the EU and Member States.
Principle # 4: The institutional recognition of the importance of civil dialogue
Consultation of persons with disabilities, including children with disabilities and their representative organisations continues to be on an ad hoc basis across all institutions. The process for consultation is not clear or documented, nor has it been adapted to meet the requirements of the UN CRPD.
Besides Article 4.3, the CRPD also stipulates in its Article 33.3 that “civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process”.
The CRPD Committee expressed its concerns about the lack of a cross-cutting, overarching framework for consultation among different bodies in the EU and persons with disabilities, including women, girls and boys with disabilities, through their representative organizations.
It recommended that the EU take the necessary measures to set up a structured dialogue with an independent budget line and sufficient funding for coordination among EU institutions, agencies and bodies and for meaningful consultation with and the participation of persons with disabilities, including women, and girls and boys with disabilities, through their representative organizations.
Good practices at national level: the case of Malta
A good practice of consultation and dialogue with civil society is represented by the Maltese Government’s approach with regard to the adoption of regulations that affect persons with disabilities.
The first National Disability Policy for Malta, launched in December 2014, was indeed designed by the Committee for a Right Society, composed by persons with disability, relatives, representatives of persons with disability and other experts. Moreover, the Maltese Government promotes daily meetings with persons with disability, stakeholders and NGOs. The Parliamentary Secretary for Active Ageing and Persons with Disability, Hon. Justyne Caruana, holds regular meetings with persons with disability, their families, representatives and other stakeholders working directly or indirectly within the disability sector. Such meetings enable persons with disability to highlight those situations which hinder the full enjoyment of their rights and promote a better understanding of the daily needs of persons with disabilities in Malta.
The Parliamentary Secretariat also holds weekly meeting with the National Commission for the Rights of Persons with a Disability (NCRPD), Support Agency and other stakeholders. NCRPD is the independent Mechanism which audits the Government in the implementation of the UNCRPD. The Support Agency is a governmental body which offers community and residential services to persons labelled with intellectual disability. Through these meetings, NCRPD and the Support Agency are informed about Governmental projects and policies held by the Secretariat for Persons with Disability.
In light of this framework, the Maltese Parliament passed the Sign Language Act. The Act (2015) makes the Sign Language an official language for the Republic of Malta. The first draft designed by the Parliamentary Secretariat for Active Ageing and Persons with a Disability was discussed by the Malta Deaf Association and other experts.
The Maltese Parliament also passed a piece of legislation according to which the inclusion of at least one person with disabilities is mandatory within the Governmental Boards. This bill enables persons with disability to be more directly involved in strategic governmental decisions. This bill also allows persons with disabilities to support their claims and put more pressure on the Government to follow and respect the rights of persons with disabilities.
I would like to conclude with some examples from Ireland who we are assured by the Government is fast approaching Ratification of the Convention. These highlight the work of DPO’s in ensuring change in society that has lasting benefits.
1. About 30 years ago there was a campaign pioneering mainstream education for people with intellectual disabilities specifically children with Down syndrome. Ten children were placed in 10 local schools and Down Syndrome Ireland and the parents paid for a resource teacher to visit the schools each week. Some years later the Government took over the scheme and now over 80% of children with Down syndrome attend mainstream schools with their siblings and peers. This scheme opened the doors for other children with disabilities, enabling them to attend their local school with appropriate support.
2. In the area of employment the Government has launched a Comprehensive Employment Strategy for the employment of people with disabilities. As part of this programme an implementation monitoring committee was established to which government departments have to report on the implementation of the strategy. While it has been in place for almost 18 months I doubt if one job has been created but the more importantly the environment has changed, the thinking has changed and there is a confidence that in the coming years that there will be significant improvements in the levels of employment of persons with disabilities.
3. In the area of health there have been significant improvements in the treatment of people with disabilities and particularly children and adults with Down syndrome. I recall when my son was born over 30 years ago various treatment were denied to people like my son as it was felt the input was not worth the effort and the quality of life would not be significantly improved when compared to a typically developing person.
4. The right to vote and participate in political and public life is a more recent example where the prevailing thought was that people with disabilities were not allowed or should be denied this basic of rights. Despite the UN Convention there were still some countries and bodies advocating restrictions in this area. However because of awareness-raising campaigns this matter at a European level is substantially improved but as with all aspects in this debate complacency is not an option.
A Lot Done – A Lot More to Do