Introduction

The National Physical and Sensory Disability Database (NPSDD) is a national health information system that captures the use of and need for specialist disability services. Increasingly, it is recognised that national health data that is high-quality and timely can assist with policy and service planning.

The NPSDD was established in 2002 and is managed by the Health Research Board (HRB) on behalf of the Department of Health (DoH). The Health Service Executive (HSE) and service providers are responsible for collection of the data. Data on the service use and requirements of people with neurological, physical, sensory and/or speech or language disabilities are published each year in the annual reports of the NPSDD. 

Individuals are registered on the NPSDD if they have a persistent disability and are in receipt of, or require, a specialised health or personal social service, and/or a specialised hospital service related to their disability. Participation in the NPSDD is voluntary and as not every individual who has a disability is availing of or requiring services, the database cannot provide a definitive epidemiological statement on the number of people with a particular disability or diagnosis. For this reason and due to issues of coverage, there is an under representation of children with physical and sensory disabilities on the NPSDD. 

2016 data

In December 2016, there were 21,763 people registered (with consent) as using or requiring  disability support services and of those, 5,606 (25.8%) were under eighteen years of age.

Age group and gender 

There were significantly more males (3,504, 62.5%) than females (2,102, 37.5%) in the under eighteen years age group registered (see Table 1 for gender and age group). 

Table 1 Age Group And Gender Npsdd 2016

Type of disability

Table 2 shows the type of disability of those aged less than eighteen years on the NPSDD. Living accommodation/living arrangements The majority of those registered aged under eighteen years lived in private accommodation (4,206, 75.0%) or rented accommodation (1,362, 24.3%), with less than five children residing in a full time residential setting. Almost all 5,519 (98.4%) lived with family members. 

Table 2 Types Of Disability Npsdd 2016

Diagnostic category

The most commonly reported diagnostic categories were: communication (including speech and language disorders, dyspraxia) (1,919, 34.2%), followed by nervous system (including cerebral palsy, spina bifida and hydrocephalus) (1,495, 26.7%) and intellectual / developmental (448, 8.0%). Of those reporting a secondary diagnosis (2,427, 43.3%), the most commonly reported secondary diagnostic categories were communication (863, 15.4%), behavioural (290, 5.2%) and nervous system (230, 4.1%). 

Primary carer 

The majority of those aged under eighteen years reported having a primary carer (5,507, 98.2%). Of those, 99.7% (5,491) lived with their primary carer. Most primary carers were parents (5,404, 98.1%); with the remainder described as siblings, foster parents, other relatives or ‘other’. The majority of primary carers were aged between 19 and 49 years (5,341, 97.0%).

Service use and requirement 

The 2016 annual report presents the current service use and future requirements of those under eighteen (and those aged eighteen years+) in tabular format.

In 2016, the most frequently used services by those under eighteen were physiotherapy, occupational therapy, speech and language therapy and summer camp respite.

Conclusion

Having reliable data available to plan services for children and young adults with disabilities is essential if they are to receive the most appropriate services and supports to enable them to lead fulfilling and rewarding lives. The NPSDD annual report presents this information in text and tabular format on the HRB website www.hrb.ie/publications/disability. Further analyses of the data are frequently requested by the DoH, the HSE and in order to inform research relating to the provision of services for children and young people. Routinely reported data on specialist disability services plays an important role in policy making and service planning for the disability sector.