Intellectual Disability Database

Rules

The information on the database is gathered by people who are in contact with people with intellectual disabilities. For example, service providers, Local Health Offices, voluntary bodies, community care workers, public health nurses, school principals and others involved in education. The information is given to the Health Service Executive (HSE) - each Local Health Office has a Database Co-ordinator. The regional Database is compiled from this information.

The national Database is compiled from the regional database. The national Database does not include the individual's name or the name of his/her family. The national Database is updated twice a year and the existing information on it is reviewed once a year. The information is retained on the Database while the individual is receiving services or is in need of services.

This information is analysed by the Health Research Board. The National Intellectual Disability Database Committee operates within the Health Research Board. There are over 25,000 people registered on the National Intellectual Disability Database (NIDD). The statistical information collected, is used:

• To monitor current service provision
• To predict future service requirements
• For research.

The following information is held on the Database:

• The date of birth of the person in question
• The HSE Area with responsibility for providing the service (including community care area, and planning area)
• The gender of the person in question
• The degree of intellectual disability of the person in question
• The types of principal allowances received by the person in question (Medical Card, Disability Allowance, Rehabilitation Maintenance Allowance, Domiciliary Care Allowance)
• The current service provision for and future service requirements of the person in question
• The type of day/residential services used by the person in question
• The agency providing day/residential services to the person in question
• The level of supervision received in these day/residential services
• The day/residential services required in next five years by the person in question
• The year in which these day/residential services are required
• The level of supervision required in these day/residential services
• The contingency (back-up) day/residential service plans and the level of supervision required in these contingency services
• The date of completion of services received by the person in question
• The date of the person's removal from database and the reason for it.

Personal details, including names and addresses, next of kin contact details and Personal Identification Number are known to the HSE but are not on the national Database and are not known by the Health Research Board.

Access to the Database

If there are details about you on the database, these details may be accessed by:

• You, (or if you are a child), by your parents or guardians
• By a small number of people working for your service provider and/or your Local Health Office.

The statistical information from the database, that is, information that does not identify any individual person is available to:

• The Department of Health
• The Department of Education and Skills
• The Health Research Board, and
• Researchers and others with a legitimate research interest.

Each Health Service Executive (HSE) Area has a committee that considers requests for access to statistical information from the Regional Database and where it is appropriate, makes this information available.

A National Database Committee considers requests for access to statistical information from the National Database and where it is appropriate, makes this information available.

The National Intellectual Disability Database Committee issues an Annual Report each year containing information on the current level of service provision.

Data protection

The Data Protection Act, 1988 and the Data Protection (Amendment) Act 2003 applies in the normal way to information on this Database. This means, in summary, that you or your parent/guardian if you are a child:

• Have a right to get a copy of the information held about you on the database - you can do this by contacting the Database Co-ordinator in your Local Health Office.
• Have a right to have any inaccurate information corrected or removed.
• Have a right to complain to the Data Protection Commissioner if your rights are not respected.