I am the only witness who is here in person, not virtually, today. I have found it inspiring to hear from the initial speakers, Mr. Sinnott, Ms Ó Brolcháin Carmody, Ms Conway and the other contributors whose names I cannot remember because I had some difficulty in hearing. I thank Senators and Deputies for this opportunity. I made a submission approximately one year ago and I am delighted to be here. I hope to add to the conversation in a constructive way. My submission is wide-ranging and I thank three people who helped to get me sorted, Ms Mairéad O'Donovan, Ms Tracey O'Driscoll and Ms Brenda McCauley. They have been very helpful. I thank everybody. My submission will be read out by an application called Browsealoud, which I am told is very listenable.
I have been blind for the past 19 years, before which I was a teacher of young people from disadvantaged areas. Unable to find alternative employment but cushioned by a disability early retirement pension, I have worked in a voluntary capacity for the past 19 years. I have been involved on the board of Fighting Blindness, the National Council of the Blind and Care Leavers Ireland, both as a director and a volunteer. I am also involved in the Dublin city public participation network, both as a strategic policy committee representative on Dublin City Council and member of the secretariat and disability thematic group, which represents over 800 voluntary organisations, 250 of which are from the social inclusion pillar. I am an ordinary person writing from my experiences. I do not have the necessary research or legal proficiency and ask the committee to consider my submission within this context. I warmly welcome the work of the committee and its members and ask them to consider the following specific points.
I will first address disability and the law. In light of the United Nations Convention on the Rights of Persons with Disabilities, the Disability Act needs to be changed. My understanding of this Act is that it gives to the person with a disability a right to be assessed but it does not give the right to have the service which should follow from the assessment. I ask the committee to consider updating the Disability Act to enshrine for people, as part of the plan, that services are a right.
Even within the right to an assessment, I believe that children from disadvantaged areas may have to wait up to two years for an educational assessment. I ask for some form of accountability and monitoring through collecting data on waiting times for disability allowance, mental health intervention, occupational therapy, etc., and that these key performance indicators be made available to all concerned on a Government website. I also ask that some minimum timelines for implementation of care plans be introduced.
I will turn now to medical and GP visit cards. I ask the committee to consider that within the roll-out of Sláintecare, rather than prioritising medical and GP visit cards on chronological age basis, they be rolled out on a basis of disability. This will ensure that those with disabilities are not left last in the queue, which seems to occur often. I believe the expert group established to report on such matters was incorrect in concluding that it is not possible to differentiate between different levels of disability in areas such as asthma and arthritis.
I will now consider personalised budgeting or the money following the patient. I was greatly impressed by a mother with a daughter who has an intellectual disability and had successfully gone through primary and secondary education, and was then in a day service run by one of the large charitable organisations. On an unannounced visit, the mother found her daughter had regressed greatly and was sitting separated from the group, wearing an overcoat on a warm day and talking to herself. She campaigned to the Minister to have the money being spent on the day service given to her to employ a personal assistant for three mornings a week. That was eventually granted and it transformed the life of her daughter who was able to develop her own plan which included swimming, visiting the local youth club and gardening. I realise this will not suit everybody but the principle of choice should be afforded to all, with certain conditions attached. There is one organisation established by the late activist, Martin Naughton, called Aiseanna Tachaíochta which attempts to achieve this.
I turn now to the ownership structure of large voluntary organisations. As voluntary hospitals provide one quarter of all acute services and voluntary organisations provide two thirds of disability services, the ownership at times proves controversial. Recent developments in sight loss services meant that HSE staff had to move quickly to maintain the service until certain land is sold. This leaves the service users in a vulnerable position, despite having contributed large capital amounts to the building of these premises and the voluntary organisation reaping these rewards on sale without reimbursement to the State. Insofar as possible, the State should own these lands and buildings in order to exert control on the type and quality of services provided and the continuity of same. The State may act as landlord under service level agreements to allow voluntary bodies to still run specific services from these lands and buildings.
Although many of the large voluntary charitable organisations started in a small way, with a close connection between the founders and members, this has evolved to many of them being run like exclusive corporations with their boards in control of choosing new directors without any access to power, through their governance, by the members. This has led to scandals where the trust of the public in certain large voluntary organisations has been eroded. The democratisation of the governance structures of these organisations can be achieved through automatic membership of the company or charity by members who have a disability concerned, with the power to attend annual general meetings, vote for directors and propose motions. I ask the joint committee to research this matter to see how many voluntary organisations allow members to do what is a common experience, from the GAA to Educate Together schools, and allow members to vote for directors without needing ratification of a current board member. Independent Living Movement Ireland is an example of good governance in this regard.
The new virtual media platforms make this easier rather than harder to achieve. Public participation networks are now found in all 31 local authority areas. These networks empower people with disabilities to bring about changes in local services. They were set up as a complementary strand to the main work of the elected councillors. The public participation network allows voluntary organisations under the pillars of environment, community and social inclusion to elect representatives to the strategic policy committees of the council. Within the Dublin City Council area, approximately 250 organisations are within the social inclusion pillar, the majority of which deal with disabilities. I ask the joint committee to encourage public participation networks as they allow people with disabilities to influence policy in many areas, such as transport, planning, housing, sports, arts and culture, environmental policy and finance. A practical example is that shared space and bus corridors can be dangerous for people with disabilities and have been changed through representation from social inclusion representatives on strategic policy committees. Plans for the new central library in Parnell Square were changed to include accessible features, such as a quiet space and graphic novels for those with autism.
I will turn to the definition of DPOs. The Convention on the Rights of Persons with Disabilities makes a distinction between organisations, largely service providers, that are for people with disabilities and those that are with people with disabilities. It gives priority to the latter in shadowing the implementation of the convention through the Irish Human Rights and Equality Commission on an annual basis. I ask the committee to endorse and expand this approach under the motto "Nothing about us without us".
The advances in digital technology have literally changed the worlds of people with disabilities. There is a need for new visionary thinking around the role of digital technology for people with disabilities. For example, less than 1% of people with visual disabilities use Braille. I use my iPhone as my eyes to the world. I can email, text, read web pages or write documents all by speech. The advances in machine learning and speech recognition will soon allow all blind people to use smart speakers connected to smartphones, which will allow access to learning and participation in new and evolving ways. The challenge is not so much in digital literacy as in digital platforms becoming easily accessible to people with disabilities. A simple example is audio description which allows blind people to watch films and shows. This technology is at a very low level in Ireland.
The national and private broadcasters should have to implement a policy of using audio-described shows for a certain percentage of their output.
As most young people with disabilities are integrated into mainstream schools, the issues of school ownership and patronage can cause problems. For example, some schools can be slow to admit children with autism. The power balance between the patron and the State can allow the care of people with disabilities to fall through that particular crack in accountability. Even in this progressive era, the State outsources its educational responsibility to private organisations, such as Educate Together. This may, in the future, lead to the same difficulties encountered in respect of the faith-based patrons. I recommend the VEC-type ownership and accountability model for schools.
My next point relates to a medical or disability database. At present, hospitals appear to work in silos when co-ordination of patient data is urgently needed for research, clinical trials and reimbursement for new drugs. Across a range of disabilities, there are great possibilities for new drugs, from treatments for cystic fibrosis to gene therapy for certain forms of blindness. Without co-ordination among hospitals and consultants regarding a reference database, decisions cannot be made to allow clinical trials or to have robust cost–benefit analyses related to reimbursement for certain drugs. I ask the committee to consider systemic change in this area.
I thank the committee members for reading my short, hastily-put-together document and wish them all the best in their endeavours.