Mr. Brian O'Donnell:

I thank the Chairman. The National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability welcomes this opportunity to meet with the committee today and wishes to be of assistance to the committee in any way that we can in consideration of this very important matter. The reason for the invitation is to allow us to respond to recent media reports about organisations that run residential facilities for people with disabilities that are not in compliance with the regulations in accordance with the Health Act 2007. However, at the outset it is important for me to point out that the member organisations of the federation are incorporated companies limited by guarantee with their own independent boards of directors, chairs, CEOs and management teams and, as such, we are not legally authorised to speak on their behalf. The specific details of cases and reasons for non-compliance in any instance would not be known to us but any questions the committee has relating to the reports can either be addressed directly to the organisations themselves or I will be happy to address them with the organisations concerned.

I wish to inform the committee of the actions we as a national federation have taken to promote equality standards in our member organisations. To provide a little bit of background, our federation is the national umbrella organisation for voluntary agencies that provide in excess of 85% of this country's direct support services to people with intellectual disability and autism. These support services are provided on a service arrangement basis under sections 38 and 39 of the Health Act 2004 on behalf of the HSE, which has statutory provision for the provision of services, and include the provision of education and training opportunities, therapeutic supports and residential, respite and day services.

Our mission is to provide the leadership and support that will enable voluntary organisations to adapt to a radically changing operating environment with the ultimate aim of ensuring that the people whom our member organisations support benefit from best quality service according to their needs. In pursuing our mission we adopt the guiding principles that people with an intellectual disability have the right to be supported, to live a life of their choosing and to be included in all decisions that affect their lives.

Considerable work has been undertaken by the national federation in recent years aimed at supporting policy and legislative development and the continued reconfiguration and development of services that seek to embrace the principles of person centredness, access, accountability and quality. This work has included the organisation of conferences, seminars, shared learning events, high quality training programmes and important project work.

I will mention two conferences in particular, the first of which was the Immersion event, which was a landmark one for the federation. Its title was Immersion Transformation Programme - Towards a Good Life. It was a five-day immersive learning event, which was organised by the federation in April 2013. The event focused on providing leadership and practical support in the implementation of the new national disability policy developments. Critically, Immersion was led by international experts who provided an in-depth introduction to important themes in the area of supported self-directed living to more than 300 attendees, including staff from our member organisations, statutory providers, families and people with intellectual disabilities themselves. It was a truly landmark event and there was huge learning out of it in terms of providing leadership and practical support in the implementation of national disability policy.

The federation, in collaboration with an organisation called Genio, has developed a four-week training programme called Enabling Excellence on the key components of social role valorisation theory. The programme was provided to staff members from 30 of our member organisations along with staff from a range of other service providers, including statutory providers.

I wish to make reference to a major project we have under way called the Next Steps project. The purpose is to support our member organisations as they progress with the development of individualised supports for people who use our services. The overall aim of the work is to ensure that people with intellectual disabilities are supported to live a life of their choosing. In all, we have 25 member organisations participating in the project. Effectively, it is a community of learning. We take a case study approach to share learning in the development of individualised supports.

The National Standards for Residential Services for Children and Adults with Disabilities document was published in January 2013 by HIQA. In preparation for the introduction of the regulations in November 2013, the federation supported its members in a number of ways. Primarily, the support was around information sharing, which is critical. Since the introduction of the regulations there has been ongoing inter-agency sharing of information and experience leading to problem resolution throughout the services. For example, there could be information sharing where the regulator has identified a deficiency in some policy in respect of some aspect of care in one organisation. We facilitate cross-sharing with other organisations with robust policies that have passed the test. This is an ongoing process. As one might expect in a federation such as ours, we facilitate information sharing in terms of policy but we also facilitate study visits for organisations in respect of which compliance remains a challenge to organisations that are fully compliant.

The role of our quality and standards sub-committee has been expanded to include a central focus on the implementation of the regulations. Our submission goes into some detail on the matter. As a national federation of service providers, we have been in the vanguard of promoting quality for many decades, as one might expect. Our quality committee carried out major international research during the 1990s. This culminated in the publication of a report that was effectively a critique of seven different quality systems applying globally in services for people with intellectual disability. The report was published by the quality committee and made available to organisations embarking on achieving accreditation in quality. We have kept the committee in place. Earlier, I pointed out that the brief was expanded in 2012 to include a central focus on the implementation of the regulations.

The federation has a strategic plan covering the period 2016-19. One of the strategic priorities identified in the plan is a commitment to continuous quality improvement and innovation. A range of actions are identified in the plan aimed at achieving this strategic priority. The federation website is www.fedvol.ie. A resource point was developed by us to facilitate the sharing of HIQA-related policies and documentation and is accessible on the website.

We are represented on the HIQA provider forum. We have ongoing engagement with HIQA. As the regulatory process took hold and began to progress, issues began to emerge around the regulatory process that we, as providers, brought to the attention of HIQA. It was agreed between us that there would be merit in establishing a forum. In fairness to HIQA, it has been responsive to providers. The forum was established to facilitate direct communication between the authority and representative organisations of service providers with regard to issues pertaining to the regulatory framework for services to people with disabilities. The forum meets on a quarterly basis. It provides an opportunity to raise issues relating to the overall HIQA registration and inspection process as well as agree actions on how these issues can best be addressed.

We have contributed to the review of the implementation of the regulations and inspections of residential services for people with disabilities carried out by the National Disability Authority in 2015. More recently, we participated in a discussion on the regulation of designated centres hosted by HIQA. I will say more about that later. Specifically, the NDA review confirmed that of the 18 outcomes HIQA inspect against, approximately two thirds of outcomes were found to be compliant or substantially compliant. The NDA review focused on 192 HIQA reports that were selected for detailed analysis. This sample covered the first year of regulation. An earlier contribution by HIQA representatives referred to the fact that of the 1,100 designated centres requiring registration at the date of commencement of the regulations on 1 November 2013, only 200 remain to be registered today. This points to progress on the issue.

Engagement with the people with intellectual disabilities who we support is vital. They should be foremost in our thoughts in all of these discussions. We are mindful of the need to ensure that the perspective of these people is understood. As a result, we established a video booth at a self-advocate conference run by the Brothers of Charity Services Ireland, one of our member organisations. The conference was attended by over 300 people. We offered the attendees the opportunity to tell us what they want to say about HIQA. This resulted in the development of a DVD, which I included in the briefing pack for committee members. We had the opportunity to present this work to HIQA senior management. It was gratifying to see the way the content of the video was noted by HIQA management. Significant learning is to be gained from such study. Earlier, Mr. Quinn from HIQA alluded to the fact that it is HIQA practice to consult and liaise with people who are supported. We advocate a more systemic or systematic engagement with people who are supported because they have informative things to tell us.

It is fair to say that the commencement of the inspection and regulation process has posed considerable challenges for service providers. Organisations have welcomed the introduction of standards and the establishment of HIQA to oversee the registration and inspection process. However, the detailed requirements of the regulations and the pace of change have forced organisations to respond and adapt within a relatively short timeframe. While progress is being made, it will take more time for all organisations to be fully compliant with the regulations. This was adverted to in earlier contributions.

The federation has no doubt that the absence of a pre-regulatory impact assessment was a major deficit. Such an assessment would have established the state of readiness of service providers as well as the resource implications for the sector. It meant that service providers have to meet the significant regulatory requirements without adequate resourcing. The costs associated with registration and home adaptations, including upgrades, fire equipment, protection measures and staffing, are immense, surprisingly. Total compliance costs for our member organisations for the period 2015 and 2016 amounted to €43 million, of which €17 million had been provided to agencies by the HSE. This left a shortfall of €26 million.

I will outline the overall impact to date. In the main, the introduction of the regulations in November 2013 has had a positive impact on the lives of children and adults living in residential services and designated centres.

The process of external inspection is powerful and the introduction of the statutory regulations has made services more accountable and identified areas of poor practice that services need to address as a matter of priority. There is also an increased focus on residents' rights, equity, how complaints are addressed and treating people with dignity and respect, all of which enhance individuals' overall quality of life.