Ms Louise Loughlin:

I thank the Chair and members of the committee for inviting us here today. I am the national manager of the National Advocacy Service, NAS, for people with disabilities. We provide independent, professional and free advocacy services to adults with disabilities. We ensure their will and preferences are heard in decisions that affect their lives. Last year, we provided more than 3,800 advocacy interventions. Demand for our services has grown dramatically in the past year. Our waiting list figures have increased from 161 people in January to 251 people currently. This increase can be attributed to being under-resourced to manage the increased demand brought onto our service due to Covid-19 related issues and, in more recent times, the impact of the cost-of-living crisis on the people we support. In particular, almost 40% of cases this year have been related to housing issues. We also host the patient advocacy service, which was commissioned by the Department of Health. It provides free, independent and confidential advocacy for people who wish to make complaints about patient safety incidents in HSE-funded public acute hospitals or nursing homes.

Advocacy is vital to disability service provision. Advocacy ensures a person’s will and preferences are heard. It acknowledges the lived experiences of people with disabilities and upholds people’s rights. Mental health is a constant factor in our work. A total of 25% of our cases involved some form of mental health issue in 2021. We project that this will be sustained in 2022. We welcome the reforms to the Mental Health Act , but we would like to underline the importance of completing and implementing those reforms as soon as possible to ensure it fully protects people with mental health issues. We work with many people who have both intellectual disabilities and-or autism, who are inappropriately placed in acute mental health facilities and have no agreed arrangement for support in the community. In these cases, there is often disagreement between HSE mental health services and HSE disability services about whose responsibility it is to provide these supports. We also meet people living in acute units despite being medically fit for discharge because they have nowhere to go. I will give the committee some examples.

Anne - not her real name - was involuntarily detained in an acute mental health unit. She had received treatment and was assessed by her psychiatrist as being able to leave the unit, but she had nowhere to go. She presented at her local authority as homeless. The local authority had no available hostel accommodation or social housing available, so it could only offer vouchers for Anne to access bed and breakfast accommodation. The voucher value was €65 per night but the cheapest accommodation was €85 per night, so therefore, in those circumstances, Anne remained in the acute unit. This is not an unusual example from our casework. We also regularly experience cases where the interaction between community healthcare organisations, CHOs, and mental health services can impact the quality of life and increase rights restrictions placed on people in the community.

Another is example is Bill - again, not his real name. Bill was living at home with his family while waiting for a funded residential placement. Bill has a moderate intellectual disability and mental health issues. He was previously discharged from an acute mental health hospital and was supported by a community mental health team pending other arrangements, including his own residential placement. There was a long history of discussions for residential support but no agreement had been reached between the CHO and mental health community services for funding. The CHO disability side argued he was not disabled enough for its criteria, but the mental health team reassessed him as having a moderate intellectual disability. Bill was unable to cope living at home and his family eventually had to obtain a safety order due to difficulties in supporting him. Unfortunately, Bill breached the order and was arrested and spent time in prison as a result. If Bill had had appropriate support, this situation may not have occurred.

We also work with many people with dual diagnoses who face other issues like addiction or homelessness. Many of these people require additional support to move on from emergency accommodation, yet there is no specific agreement to fund these supports. Many disability service providers state that people in these situations are outside their remit. The criteria for accessing disability services should be expanded, as currently they are frequently cited as a reason not to provide support. We welcomed this committee’s 2023 pre-budget submission on aligning disability funding with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, budget.

We were empowered by the call for adequate funding for our service so we can fulfil our role under the Assisted Decision Making (Capacity) Act 2015 when it comes into force. We welcome the Government's recent amendments to the Act but we believe it can still be strengthened further.

The Act is part of Ireland’s response to meet its obligations on legal capacity within the UNCRPD. Article 12 of the convention states that some people will need support to fully avail of their right to legal capacity. One such support is advocacy. The Decision Support Service, DSS, demand forecast predicts 22,000 people will require some level of decisionmaking support. Some of these people will require independent advocacy. As the Act has not yet commenced, we still do not know what the impact on our service will be, but we know there will be a further increase in demand.

Despite the clear role of advocates in the implementation of this Act, the Assisted Decision Making (Capacity) Act lacks any reference to the role of independent advocacy. We believe the Act should place the provision of advocacy on a statutory footing. The Act should contain a definition of an independent advocate. Without this, other stakeholders who might have a conflict of interest may take on the role of advocate. The definition should focus on the advocate being independent, professional and attached to an organisation. The DSS draft code of conduct for advocates contains a strong definition that could be replicated in the Act. “Independent advocate” should be inserted into the list of recognised interveners under the Act and “independent advocate attached to an organisation” should be included as a person in the list of persons whose views are to be considered by interveners when they are intervening. These additions to the Act should ensure advocates are protected in situations where a decisionmaking representative objects to the involvement of advocacy as no avenue for the advocate to pursue this currently exists other than a complaint to the DSS. Advocates should be given the right to attend court and to access documents, data and other information regarding people they support. This would ensure the voice of the person is central to the process, especially the voice of people with nobody to speak up for them and those with psychosocial and dual diagnoses. These issues are all hugely important to our work and to the people we work with. I thank the members of the committee for their continued commitment to support the work of the committee on psychosocial disabilities.