Ms Jean Mullan:

I am grateful for this opportunity to highlight some of the challenges facing people with autism and intellectual disabilities and their families living in this remote rural area in north-west Connemara. I grew up in Scotland, spent some years in the USA and came to live in Ireland with my husband and two young daughters in 1993. After a long engagement with uninformed and unsympathetic professionals, our elder daughter was finally diagnosed with Asperger’s syndrome, aged 13 years, in 2002. Our daughter is now 32 years old, so we have had many years experience of living as a family trying to support her as she makes her way through life. In addition, I got the opportunity of studying for the LLM in international and comparative disability law and policy at National University of Ireland, NUI, Galway in 2012. I am a director of FORUM Connemara CLG, our local community development company, a member of Galway Disability Forum and the chair of Lámh Linn, a support group for people with disabilities and their families living in our area. It is very exciting to be part of this discussion aimed at moving from the status quotowards compliance with the UNCRPD which aims to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities".

In my submission I have outlined several case studies describing the challenges faced by people with autism and intellectual disabilities and their families living in north-west Connemara. The overall picture, as has been said, highlights a lack of services with a high turnover of professionals, long waiting times and a lack of supports, such as childcare and respite. Although allpeople with disabilities share similar difficulties in accessing appropriate living facilities, healthcare and other support services, people living in rural areas far from Dublin face the added challenge of travelling long distances in order to access the services and support they need. This adds greatly to the stress of supporting a family member with an intellectual disability and is contrary to Article 25(c) of the Convention on the Rights of Persons with Disabilities, CRPD, Article 25(c), relating to health, which requires that services be provided "as close as possible to people’s own communities".

One of the universal problems that people with autism and intellectual disabilities face is social isolation. They are kept separate in school, services and living arrangements. They have no friends and colleagues. There are many obstacles which often result in them being excluded from educational, employment, social and cultural activities. This is obviously detrimental to their health and well-being. I will give some examples from my community which demonstrate the lack of alignment with the provisions laid down in the UNCRPD. A widowed mother of two boys aged 13 years and 14 years, both attending the same school, puts her 14-year-old on the school bus every morning, but because there is no escort available, she has to drive her 13-year-old who has autism to and from school daily. That is a 16-mile round trip. This is contrary to CRPD Article 9 - Accessibility and Article 24 - Education. Ms K, who has Asperger’s syndrome, has been registered with a nationwide employment support service whose remit is to match people with disabilities with employers who will provide "reasonable accommodation" and a suitable job for the person with a disability. The employer gets a wage subsidy and is offered disability awareness training but this is not mandatory and, therefore, is not taken up by the employers. In the only job placement she was offered, the employer had no idea of what Asperger’s syndrome is. This is contrary to CRPD Article 27 - Work and employment.

A vivacious young woman in her 30s with an intellectual disability would love to take part in drama, dance and music activities. However, this is very limited in our area and there is no suitable transport to Galway. This relates to CRPD Article 30 - Participation in cultural life, recreation, leisure and sport and Article 9 - Accessibility. Ms J, a 17-year-old girl with severe learning disabilities, was socially isolated and was struggling to deal with post-school options and to plan her future. She is eligible for disability allowance but her family does not know this or how to apply for it. This is contrary to CRPD Article 21 - Freedom of expression and opinion and access to information. Finally, and most fundamentally, the aim of every person is to be able to live an independent life. Ms R, who is in her 30s and has an intellectual disability, had hoped to be living in an assisted living setting at this stage of her life. Currently, there is no purpose-built accommodation in our area provided by the State for adults with autism or intellectual disability. This would require a team of suitably-trained support workers available 24-7 and access to additional supports and social activities on a regular basis. At present, this role is fulfilled mostly by parents, who obviously become less able and more anxious as they get older. This is contrary to CRPD Article 19 - Living independently and being included in the community.

On a positive note, there have been some excellent programmes delivered at a local level which have addressed some of these issues. Recently, the ability programme delivered in our area by FORUM Connemara put in place a number of initiatives promoting positive pathways into training, education, social activities and work experience for people with disabilities aged 15 to 29 years. This programme achieved impressive outcomes but ended after 36 months.

I thank the committee for the opportunity to present a picture of some of the challenges faced by people with autism and intellectual disabilities and their families living in north-west Connemara. I urge the committee to take the necessary steps to ensure that we reach compliance with the provisions of the UNCRPD as soon as possible and create the socially inclusive country we all deserve.