BECOMING AN ADULT WITH A MILD INTELLECTUAL DISABILITY

A study by Áine McGuirk, Programme Director, St Augustine’s, Blackrock surveyed school leavers on their current lifestyle and wishes for the future.

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In 1999 the Health Research Board identified 27,149 people with an intellectual disability in Ireland. This gives a prevalence rate of 7.49 / 1000 total population. Of those 11,149 people are registered as having a mild intellectual disability. ‘The larger number with mild intellectual disability up to age nineteen reflects the number of children in special education who receive support services from the intellectual disability sector, many of whom do not transfer to the intellectual disability services after school” (Mulvany 1999).

The number reflected in the database is most likely a gross under-representation of the real figure of persons with a mild learning disability. All of the children in special classes in mainstream schools are not represented, as well as the children in special schools funded exclusively by the Department of Education. There are thirty-one schools in the country for children with a mild intellectual disability, and the majority of these are not contributing to the database.

It is expected that adults with a mild intellectual disability will manage to avail of the opportunities in society, by way of employment, personal social services, health care and housing needs. The transition from child to adult roles is difficult for all young people and, while people make transitions through all of their lives, this is the most marked of transitions. Parents generally hope that their children will grow to live productive and independent lives. The elements involved in the transition to adulthood usually include leaving school and entering work or further education, leaving home and family of origin, becoming involved in sexual relationships and perhaps marriage or cohabitation, becoming a parent, and becoming a full adult consumer able to purchase commodities that signify adult status.

A study undertaken in 2001 to examine the transition to adulthood for young persons with a mild intellectual disability examined a number of areas in order to assess the physical, material, social, emotional and productive well being of a small group of past students, with a mean age of 23.7 years. Living arrangements, employment, leisure time and social activities, health, and hopes and dreams for the future were all looked at to ascertain the degree of satisfaction felt in each of these areas.

One of the areas examined was the living arrangements of the individuals. The results of this showed that 89% still lived at home with their parents and only one of the group was living independently. While the sample for this part of the study was small (19) and could not be considered to be truly representative, the result compared favourably with results found by Deirdre Carroll who had conducted a larger-scale study of past pupils from the same school over twenty years previously. In 1980 Carroll found that 71% of her sample were still living in the family home. Of the group studied in 2001, only two had ever lived away from their family home since leaving school, and only one remained outside the family home environment.

About 10% of the group studied showed evidence of full integration into adult life, in their employment, leisure time activities, and hopes for the future. They were also the people earning the most among the group studied. Only one-third were completely happy with their current work or training situation. Over 50% expressed a desire to have a different job. Only 26% reported having contact with workmates after work and at weekends. Leisure activities were varied and included the cinema, pub and visiting friends, on a regular basis. A much smaller number accessed nightclubs and sports clubs. Activities at home centred primarily on the television and computer games. Almost all were dependent on public transport or parents to get around.

The group were asked to express their three wishes to ascertain their hopes and dreams for the future. Almost one-third placed the desire to have their own home as one of their hopes for the future. For some an appropriate residential service may be the necessary step toward achieving that goal. An Irish study into homelessness found that 18.9% of the people studied had mild to moderate cognitive impairment. (Condon 2001). A group that may be particularly at risk are the children in state care who have a mild intellectual disability. These young people leave children’s services without the safety net provided by families during the transition to adulthood, and often without the input of competent professionals to guide them. They are expected to leave school and their home all upon achieving eighteen years, something that is required of no other young adult. They may reject what help is offered in an attempt to escape from a world controlled by social workers and care workers.

Transition strategies include acquiring the skills needed to achieve the three basic pillars of community adjustment. These are residential environment, employment and social and interpersonal networks. To create these pillars a young person will need the assistance of generic services, time-limited special services and/or ongoing special services, depending on the degree of disability and the adjustment that is made to adult life.

Adults with a mild intellectual disability are difficult to follow up. The preponderance of research relating to other categories of intellectual disability is of little surprise, as they are often located in very specific day and residential services and are therefore easy to locate and access for research purposes. These services provide a ‘cradle-to-grave’ service and their programmes follow all the transitions of the person’s life, beginning with early services, even to retirement projects. Those in the ‘mild’ group often try to throw off the shackles of specialist services once they leave school, as they try to make their way in adult life. Indeed many are successful in being able to integrate into adult life, and valuable insights could be gained by identifying what factors contribute to their success. However, my concern is for the adult who requires assistance, and for the lack of specific services to cater for this section of the adult population.

The results from the cohort studied provide a picture of how a group of past pupils from one special school are getting on in their adult lives. As the number studied was small, this cannot be taken to be truly representative of the group generally. However the findings mirror those found by Deirdre Carroll over twenty years ago. There is a clear lack of accommodation and independent living services to cater for this group. The group showed difficulties in personal relationships and almost all had not yet moved into an adult personal relationship with a partner or spouse. There was clear evidence of poor economic circumstances for the young adults, with many boosting their income by claiming the Disability Allowance and living with parents. A high level of dependency was evident, with only one person living independently with the support and assistance of a defined service.

The group generally showed evidence of good physical and mental health. Few had any specific health problems necessitating a high level of contact with health services. All reported themselves to be mostly happy in their lives. There was no evidence of concern for the future and no sense of what might happen when the family could no longer provide the support needed. Some of these adults will need to re-enter the service network at a later stage. A key issue here is to ensure that services are available, appropriate and accessible in the long-term, both in the generic areas of housing, health and welfare, as well as in the disability sector. Services in the disability sector need to be designed for the specific needs of this particular group, so that these adults can be provided with the support they need when they require it.

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