Ms Annette Costello:

I thank the Chair and committee members for the invitation to speak today. I am a self advocate with lived experience. I was diagnosed with a progressive non-treatable neurological condition in 2006. With regard to the question asked in my invitation as to how my human rights have been supported, I say in summary that there is a lot more work to be done in terms of compliance with the UNCRPD, which is also evidenced in the publication of the committee’s report in January 2024. There will be a session on independent living later today, so in the interests of time I highlight that home care packages should become more person centred, with flexibility, and personal assistant services should become an automatic entitlement and provided for in primary legislation before the end of the current Dáil session.

With regard to transport, a frequent and reliable public transport service with accurate information is imperative. There is also a huge problem with wheelchair accessible taxis, and even though there may be increased numbers, the day-to-day user experience of receiving a reliable and suitable wheelchair accessible taxi is far from ideal. I have raised all of these issues with the Department of Transport accessible consultative committee since 2018. I recommend a complete review of transport services to have one that is fit for purpose for all members of society.

I will turn to infrastructure. Shared spaces, dangerous footpaths, poor dishing, kissing gates, lack of wheelchair accessible parking spaces and disabled parking bays that have no dishing to safely get on to the footpath and lifts out of order have been detailed on other occasions. Poorly designed footpaths and dishing also impact my ability to be independent in my community. If it is poor for me, it is also poor for families with buggies and older people. Infrastructure issues also lead to difficulties when trying to vote.

Leaving one’s home, many buildings, shops, social settings and ATMs are not designed for wheelchair users and this lack of universal design can cause us to be excluded and marginalised by society, even if it is unintentional. The simplest excursions outside of the home require planning like a military operation and there is no room for spontaneity. I recommend that universal design become mandatory especially for any building or social setting.

There are many issues with regard to health. However, I will highlight two that I have recently experienced. It is not possible to get a hoist transfer from a wheelchair to a DEXA scan machine. This is after contacting 13 different radiology centres - a mixture of public and private. Another challenging experience is trying to get a dental appointment where I can remain in my chair. I recommend that all procurement processes include a mandatory requirement that the equipment and environment are suitable for all. I also recommend that all healthcare facilities follow universal design and have at least one changing places bathroom in each location.

It is without doubt more expensive to be disabled than able-bodied. The long-term illness card does not cover all medications a disabled person might need. Being immobile also results in significant heating costs as it is difficult to stay warm in standard heating settings. Electricity costs also increase because of charging wheelchairs, electric beds, hoists, breathing apparatus, etc. The recent deposit return scheme will also add to my cost of living as I do my shopping online and cannot return the empty bottles easily. I recommend that all disabled people automatically receive a medical card, free public transport and a cost of disability payment as outlined in the Indecon cost of disability report published in December 2021.

Employers need to create an inclusive environment where all staff are given opportunities to reach their full potential. Disabled people are innovative, solutions orientated and offer a unique perspective, which is an asset often overlooked. We are not a problem to be solved. Diversity and inclusion is more than words; it is the day-to-day environment, language and culture. Policies and procedures are meaningless unless they translate into jobs and roles where disabled people are valued, encouraged and have career progression. I recommend that all employers action their words with regard to diversity and inclusion.

Law and order is another hot topic. An increased Garda presence is required on our streets as I personally do not feel safe. Parking on footpaths and across dishing is widely abused and the existing road traffic regulations must be enforced.

A disabled family member affects the whole family, not just the individual. The role of family needs to be valued more by Government, employers and society. Many disabled people can feel that everything revolves around them, which is not the way it should be. It is vital that the UNCRPD be implemented in an expeditious manner. All Government officials and public servants must work together with a sense of urgency. Lack of resources, human or financial, can no longer be cited as a reason for non-progress, particularly as we have seen how the Government can respond in other situations. Disability-related matters are at crisis point and have been for a long time. Missed deadlines and ticking the box without considering whether something is fit for purpose can no longer be acceptable and people must be held to account. Ireland is regarded as a wealthy country, but, sadly, there is little evidence of this if you are disabled, which is a shocking reflection of our country in 2024.

As a disabled person, I have become more resilient, highly organised and solutions focused, while trying to remain positive in a world that would exclude me if it could. Having to highlight shortcomings is also wearying, exhausting and demoralising, particularly when the typical response is "Send in a complaint". I do not want to be sending in complaints. I just want to highlight issues I feel are safety issues. Sometimes I feel as if I am regarded as a serial complainer when I am just am just trying to improve things. No decisions should be made for me or any disabled person without our input, especially at the start of any process.

I hope that the contributions presented today will further advance progress in improving the improving the lives of disabled people as prescribed by the UNCRPD. I again thank the committee for the invitation to attend and I look forward to further discussions later on.