Annual report of the National Intellectual Disability Database Committee 2009

by Mary de Paor

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The NIDD

The National Intellectual Disability Database (NIDD) is compiled by the Health Research Board (HRB) from validated data provided by Local Health Offices, service providers and school principals. In his chairperson’s statement on at the beginning of the twelfth annual report of the NIDD, Colm Desmond explains that the statistics in the NIDD present information on the demographic profile of those registered on the database for the assistance of service planners in making decisions about the allocation of resources for intellectual disability services and to provide information on the needs of people with intellectual disability for services into the future. Colm Desmond also notes that the NIDD represents part of the data collection process concerning ‘trends in service usage and need … being examined as part of the Value for Money and Policy Review of disability services … currently under way, led by the Department of Health and Children in conjunction with the HSE.’

Who is included in the NIDD?

There were 26,066 people registered on the NIDD in 2009. It includes almost all individuals with a moderate, severe or profound intellectual disability, because of the nature of service provision in Ireland. However, individuals with a mild level of intellectual disability are registered on the database only if they are in special classes, special schools, or are attending an intellectual disability service as adults—or are considered likely to require such a service within five years. Therefore the report cannot give an accurate assessment of the prevalence of mild intellectual disability. The figures for the 0-4-year age group also appear to be under.reported, with the reasons offered being that some parents are reluctant to allow information about their young child to be recorded, that some children are using only mainstream services at that age, and that the assessment of need process ‘may have had some impact on registration for this age group’. There is ongoing appraisal of the appropriateness of some registrations on the database for people who are regarded as being of average ability or with borderline intellectual disability (totalling 1242 individuals in the 2009 report). There is an additional category of ‘not verified’, which includes whose level of disability has not been confirmed, although they are registered as having an intellectual disability.

The table giving comparative figures for levels of disability and in age groups shows that over the past four years, the number of registrations in the 0-4 age group have lessened considerably, while the number in school.going years have increased . However, the most noticeable increases in age groups are that the largest groups are of individuals in the 34.54 age range (from 4985 in 2005 to 5292 in 2009) and for the over 55 age group (from 1797 in 2005 to 2223 in 2009). This trend of significantly greater numbers of people with moderate, severe or profound intellectual disability who are surviving into old age is emphasised in several sections of the present report. Since statistics were first compiled, the proportion aged 35 or over has increased from 29% in 1974 (Mulcahy 1976), to 38% in 1996 (NIDD Committee 1997), and to 49% in 2009. ‘This changing age profile … has major implications for service planning; it points to an ongoing high level of demand for fulltime residential services, support services for ageing caregivers and services designed specifically to meet the needs of older people with intellectual disability.’

32.7% of individuals registered on the NIDD in 2009 had an additional physical and/or sensory. The link between physical/sensory disability and age means that older.age groups are more likely to have these additional needs; service providers and planners must take this into account for future planning.

Additional information in the 2009 NIID Report

The 2009 report contains information on the day.service needs of children and young people as they prepare to leave the educational system and seek further health.sector services, and there detailed information on the provision of respite services— identifying the ‘growing demand for such services to support the maintenance of people with intellectual disability in a home or independent setting.’

Residential services

In 2009, 16,742 individuals lived at home with family members or a foster family. 8,251 lived in residential services. 992 lived independently or semi-independently (of these, 79.5% were aged 35 or older and over three.quarters had a mild intellectual disability). The data showed that approximately 25% of people aged 35 years or over with a moderate, severe or profound intellectual disability lived with their families in 2009. The trend continues for the sixth consecutive year that more fulltime residents live in community homes (3971) than in residential centres (2924). In 2009, 277 individuals (compared to 308 in 2008) lived in psychiatric hospitals, or in mental health community residences (53 individuals).

Respite services

There has continued to be a growth in the number of residential support places available—either as a planned or emergency intervention. The majority are service-based respite breaks. There were marked differences between regions in the total number of respite nights received in 2009.

Day services

In 2009, 25,472 people were in receipt of day services, the highest number so registered since the database was established in 1996. When day service provision in 2009 is compared with a similar table in the 2005 report, it shows a modest increase in those receiving supported employment (from 1580 to 1825), but a slight fall in full employment (401 to 349) Programmes for the older person were provided for 629 in 2005, and to 682 in 2009. In the same period Rehabilitative training places have increased from 1545 to 1752 and activation centre placements from 5067 to 6098.

Assessment of Need 2010-2014

The report indicates that 4622 new residential, day and/or residential support places will be needed to meet service requirements in 2010-2014—half of them as residential places. However, 14,678 existing places need to be changed or upgraded (two-thirds of them in day services). 189 people accommodated in psychiatric hospitals in 2009 require specialist services—90% of them requiring residential services. In 2009, 19,413 people are recorded as requiring new or enhanced multidisciplinary services (a slight decrease on the number recorded as requiring such services in the previous year’s report.) The number of new residential places required (2298) has increased by 41% over the past seven years. ‘The number of new fulltime residential places required is likely to continue to increase over the coming years as those with a moderate, severe or profound disability advance in age. Other related factors include family members being unable or unwilling to care for their family member fulltime, or situations where the individual wishes to move out of the family home.’ The demand for residential supports (respite) has increased steadily since 1998, although there was a slight reduction in demand in 2009 over 2008. Table 4.5 of the report presents the respite use and requirements of those registered, by LHO area, and the number who were living at home or in an independent setting who may be in need of respite services in the future. (Approximately 25% of those living at home or in an independent setting in 2009 were in receipt of respite care.)

School leavers

For the first time, the NIDD focuses on this specific group, to examine their likely demand for services in the health sector. Over 900 young adults with an intellectual disability will require a range of day services (mostly vocational or rehabilitative training) within that period, funded by the HSE.

Psychiatric hospitals

Of the 277 individuals in psychiatric hospitals, 169 had appropriate residential facilities identified for them and 76 of them also required a day service. Although 16 were considered as appropriately placed within the psychiatric hospital, they had identified day service requirements.

Multidisciplinary support services

19,413 people had future—most of them immediate— multidisciplinary support service needs. There was substantial demand for new and enhanced services relating to psychology, speech and language therapy and occupational therapy. There was a note that 1400 people were in receipt of the services of a nutritionist in 2009; 4343 individuals were not, but required it in the immediate future.

Conclusion

The report concludes: ‘The number of people with an intellectual disability is growing and the proportion who are in the older age groups is increasing. An older population has different needs. In addition, expectations of services are also rising. The challenge for all will be to set priorities and deliver and plan quality services within a national policy and tight budgetary framework.’

Author’s note: The full Annual Report of the National Intellectual Disability Database 2009 is available (in pdf format) on the Health Research Board website (see www.hrb.ie/publications), and print copies of the report may be obtained from the Disability Databases Team, Health Research Board, Knockmaun House, 42-47 Lower Mount Street, Dublin 2 (Tel: 01.234 5194).

In the above article some figures have been compared using the 2005 and 2009 NIDD reports. Service growth has been steady (if slower in some aspects than others) over the twelve years of the annual reports. Individuals with intellectual disabilities, their families and service providers will all be anxious to critique the 2010 and 2011 NIDD reports—hoping against hope that service.delivery statistics will not show a downward curve because of the budgetary stringencies caused by reduced public funding.

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