Ms Magdalen Rogers:

On behalf of the Neurological Alliance of Ireland, the national umbrella for more than 30 neurological charities throughout Ireland, I thank the Chair and members of the committee for the joint invitation to the NAI and MS Ireland, together with NAI members, An Saol Foundation, to discuss Ireland’s response to the rehabilitation needs of people living with neurological conditions in the context of the commitment to rehabilitation as a right under Article 26 of the UNCRPD.

Neurorehabilitation refers to the treatment provided to individuals after experiencing a neurological injury, illness or diagnosis of a neurological condition. This description, however, does not adequately convey the fundamental hope and potential that neurorehabilitation gives to people with neurological conditions. It can be the difference that enables people to return to employment, live independently, retain or recover the ability to do everyday tasks and live a full life after a neurological diagnosis. Unfortunately in Ireland, access to neurorehabilitation can be a lottery. Neurorehabilitation services are not available equally across the country. Many parts of Ireland remain significantly underserved with neurorehabilitation services, and the findings of a HSE report on inpatient rehabilitation published just last week further highlights the stark gaps in neurorehabilitation services.

Article 26 of the UNCRPD is about putting people living with a disability at the centre of their rehabilitative and habilitative care. It means offering a choice to prevent crises and to support people living with a disability in the way they want to be supported.

The gold standard of this implementation is already being put in place by our voluntary sector providers through the 2019 neurorehabilitation strategy commitment to develop long-term neurorehabilitation services in the community. As an example, services provided by NAI member MS Ireland include community worker services, wellness and symptom management programmes, exercise and physiotherapy programmes open to people with a range of neurological conditions, and respite care through the MS Care Centre. We will highlight many other examples throughout our presentation where NAI member organisations, including our members An Saol Foundation, which is present, are providing critical services in line with the long-term needs identified in the neurorehabilitation strategy in a range of areas such as residential care, vocational rehabilitation, day services and family and carer supports.

The well-publicised challenges facing section 39 voluntary providers including funding shortfalls, staff recruitment and retention difficulties, and the increasing cost of delivering services, represent a serious ongoing threat to the continuation of these services. Much more needs to be done to properly invest in, sustain and develop these vital community supports in order that they are available to everyone who needs them. The National Strategy and Policy for the Provision of Neuro-Rehabilitation: Implementation Framework 2019 to 2021 focused on three key deliverables. They are the development of community neurorehabilitation teams, the delivery of long-term community neurorehabilitation services and the development of inpatient neurorehabilitation services.

There is no doubt that welcome progress has been made in recent years in delivering on some aspects of the strategy. In particular, the Minister of State with responsibility for disability, Deputy Rabbitte, has invested significantly in the roll-out of community neurorehabilitation teams in line with the programme for Government commitment to implement the neurorehabilitation strategy. She has, in addition, commissioned pioneering research to understand the challenges facing service users and service providers in accessing and delivering neurorehabilitation services in the community. This neuromapping project, a joint collaboration between the NAI, Disability Federation Ireland and the HSE, will issue a report to be launched by the Minister in the coming weeks.

It is clear however that much still remains to be done if Ireland is to meet its obligations to people with neurological conditions under Article 26 through the full implementation of the national neurorehabilitation strategy. The strategy provides a much-needed framework and impetus for developing neurorehabilitation services. We know what needs to be done to make Article 26 a lived reality for people with neurological conditions and their families throughout Ireland. We have acknowledged the meaningful progress that has been made, through the commitment of the Minister of State, Deputy Rabbitte, and through the work of our fellow members of the national steering group responsible for implementing the neurorehabilitation strategy. It is only by ensuring everyone who needs neurorehabilitation, regardless of age, condition or where they live, gets it that we can meet our obligations under the UNCRPD to the thousands of people throughout Ireland living with a neurological condition.

Our presentation today focused on the neurorehabilitation needs of adults over 18, the age cohort for the national neurorehabilitation strategy. We are aware that services for children with acquired neurological conditions are, if anything, in even more critical need of development. That issue warrants a discussion beyond the time we have available today, but NAI would be happy to provide support and information to the committee in convening a future meeting given its importance to children and families all across Ireland.

We thank the committee for its interest in the issue of access to neurorehabilitation services and request it to support the NAI and its members in their call for full implementation of the neurorehabilitation strategy, including seeking sustainable provision of the long-term services and supports they provide in the community and ensuring these supports are available to everyone who needs them.