Ms Louise Loughlin:

I thank the Chair and committee members. The National Advocacy Service for People with Disabilities provides representative advocacy to adults with disabilities throughout Ireland. We ensure that their will and preferences are heard in decisions that affect their lives. In 2020 we provided more than 3,700 advocacy interventions. We host the patient advocacy service, which was commissioned by the Department of Health. It provides independent, free and confidential advocacy for people who wish to make complaints about patient safety incidents in HSE-funded public acute hospitals or nursing homes. This will play an integral role in protecting the rights of people in receipt of healthcare into the future.

Advocacy services are vital to the future of disability service provision. Advocacy ensures that a person's will and preferences are heard. Advocacy acknowledges the lived experiences of people with disabilities and works to uphold people’s rights. Covid-19 coincided with a notable drop in inquiries to our services from mid-February 2020 to May 2020. During pandemics and their associated restrictions there is a greater risk of human rights violations. Access to advocacy services must continue to be promoted in future service design to safeguard human rights.

The disability capacity review published earlier this year highlighted that the demographics of our population are changing. By 2032 there will be more people in Ireland living with disabilities. We welcome the recent investments in disability services in the national budget. However, as Dr. Walsh has highlighted, much of this is not focused on the needs of people with disabilities. A total of 65% of this funding went to residential care. More funding should be invested in community-based services. An issue we have recently identified is the commissioning of residential placements for people far away from their communities and families. This is linked to the lack of suitable housing in urban areas due to the ongoing housing crisis.

More investment in community-based services would also facilitate the acceleration of decongregation, which is the Government's policy to close residential services for ten or more people. We strongly support the commitment in the programme for government to decongregation. We also recognise the various State initiatives in place to support it. Ongoing decongregation is vital to align future service provision with Article 19 of the UNCRPD. Its completion will improve the lives of people living in unsuitable placements.

HIQA’s 2020 annual report stated that of the 9,166 residential places registered by the end of 2020, 31%, or 2,841 places, continued to be located in congregated settings. In 2020, only 75 people moved out of congregated settings. We have worked with many people who have moved to community-based living and have seen its positive impact. However, if the current rate of decongregation continues it could take up to 20 years for all those living in congregated settings to move to the community.

The Assisted Decision Making (Capacity) Act 2015, when fully commenced, will bring a legislative underpinning to the rights of people with disabilities to have their will and preference heard. It will also help to align Irish disability services with Article 12 of the UNCRPD, on supporting capacity and decision-making. Based on our experience, a focus should be placed on eradicating the practice of next-of-kin consent. There is no legal basis for next-of-kin decision-making, except under legal instruments such as ward of court or enduring power of attorney. Unfortunately, we continue to encounter poor practice regarding consent matters in healthcare settings, social care services and financial institutions. This severely impacts on a person's fundamental right to make decisions for themselves. The HSE human rights and equality office has carried out valuable work on this issue, and this work should continue to address the issue in all sectors.

The role of nursing homes in disability service provision is a barrier to the alignment of disability services in Ireland to the UNCRPD. People under the age of 65 being cared for in nursing homes is particularly serious. We provide advocacy to residents in almost 21% of private and 13% of public nursing homes. A total of 90% of people living in nursing homes whom we support are under the age of 65. As of 30 June 2020, 1,320 people under 65 were living in nursing homes supported by the nursing home support scheme. We welcome the HSE's ongoing pilots that are moving people outside of nursing homes and the announcement of more funding for this project in 2022. However, only 18 placements have been funded this year. We request this committee to support an increase in funding to expedite a swifter relocation of people under 65 out of nursing homes and into more suitable community-based placements.

The Ombudsman's Wasted Lives: Time for a Better Future for Younger People in Nursing Homes report, published earlier this year, examined the issue. It highlighted that the needs of people under 65 are often quite different from those of older people. It recommended ensuring informed consent is obtained from those entering nursing homes, in line with the HSE's consent policy. We recently published a report that illustrated the experiences of people living in nursing homes during the pandemic. We found many issues highlighted in the Ombudsman’s report had been compounded by the pandemic and the associated restrictions.

Last year, a nursing home expert panel report that was published acknowledged the central role advocacy plays in combating powerlessness and loneliness in the face of these issues. Residents' rights, particularly concerning dignity, freedom, choice and equality, must be respected. They need to be at the forefront of policy development and advocacy is a critical component of this. We are also a strong supporter of personalised budgets, which are an effective method of providing flexible funding for a person's care and help address some of the issues Dr. Walsh and Ms Walsh highlighted. They offer people greater independence to choose services that suit their needs. We look forward to seeing the outcome of the HSE's current pilot programmes with this model. We also support HIQA's ongoing work in the regulation of home supports. Regulation should be extended to personal assistance services in order that people will receive the supports they need at the time they need them.

Personal finances and banking constitute another important issue in the future of disability service provision. Equality legislation and the Central Bank code of practice offer people certain rights in this area. Despite this, however, we work with many people who do not have full control over their money. Better access to banking supports is essential to ensuring people with disabilities can have control over their finances.

We thank all the members of the committee for their commitment to implementing the UNCRPD and to disability matters. We thank them for their invitation and welcome any further questions.