Michael McGrath (Cork South Central, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

To ask the Minister for Health the reason the national disability database was not used to inform parents of the proposed changes to therapy provision for children with special needs as it was decided in 2009. [47890/12]

James Reilly (Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

The National Programme on Progressing Disability Services for Children and Young People (0-18 years) has been established since 2010. It is supported by a National Co-ordinating Group which has representatives from the Department of Health and the Department of Education and Skills in addition to other key stakeholders. The Programme is based on the recommendations of the Report of the National Reference Group on Multidisciplinary Services for Children aged 5-18 Years produced by representatives of the professions and management involved in delivering multi-disciplinary services to children which is available on the HSE website www.hse.ie.

The Programme aims to address the following issues in relation to children’s disability services:

- Inequity of access to services due to inconsistent development of services;

- Environmental change arising from the reorientation towards mainstream education leading to increasing demand for health services to support inclusion;

- Increasing demand for services due to population growth and increased identification of children with disability;

- The need to re-align services with emerging primary care and integrated service structures.

The National Disability Databases assist in informing the regional and national planning of disability services by providing information on current service use and future service need. The Databases are managed by the Health Research Board on behalf of the Department of Health.

Under Data Protection legislation, information held in relation to individuals can only be used in ways compatible with the purposes for which the information was initially provided. In the case of the National Disability Databases, information was sought from individuals for the purposes of recording current service provision, future service requirements, and for trend analysis and research. The use of this information for any other purpose would be in breach of the Data Protection Act.

Significantly, participation in the National Disability Databases is voluntary; the Databases do not, therefore, cover a proportion of people living in Ireland who have a physical or sensory or intellectual disability and who have opted not to be registered on the Databases.