Borderline was set up by the parents of children/adults who have an intellectual disability and are in the mild/borderline range. They felt that their children’s needs and difficulties were not being addressed. Despite repeated requests for support at different times during their children’s development and into adulthood, many professionals in health boards did not seem to understand or offer help and the parents often felt isolated and ignored. They were dissatisfied with other organisations that dealt with intellectual disability. None seemed to understand their plight. None lobbied for this group’s needs. Respite and residential places seemed to be non-existent—not being seen as a priority in comparison with other intellectual disabilities. The majority of this group had no professional back-up, no help or support. Generally the sole support for parents was themselves. Most of the parents/carers who contacted Borderline were in a desperate situation. Despite the fact that the majority of all individuals with intellectual disabilities fall within the mild/borderline group, they received the least amount of intervention.
The following paragraphs give some of the data collected by Borderline over the past few years, and in a recent survey. Parents and carers described what they have gone through with a family member who has a mild/borderline intellectual disability. It may not be every parent’s experience but it is a fair representation of what Borderline has heard during this time.
Many parents felt that the word ‘mild’ in mild intellectual disability was certainly not the word to describe the child or adult they were living with. Some with this disability also have additional conditions—conduct, emotional, anxiety, habit and eating disorders, symptoms of autism, ADHD, language disorders or neurological conditions such as epilepsy. Because of these additional conditions, they may be predisposed to psychiatric disorders.
Because this group look normal, can communicate and may seem be able to function at a high level, their needs are not considered a priority, and they are viewed as having no real disability. The sad reality is that having these capabilities gives them the ability to understand their situation. They are fully aware that they have problems and understand when they are being excluded, rejected, or victimised, but because of their disability, many are unable to do anything about it. They constantly crave equality with their peers but are unable to relate to them on their level.
Generally persons with a mild/borderline intellectual disability relate better to persons younger or with a similar condition to themselves. Many parents described how their child was constantly bullied and ridiculed. Often they become emotionally vulnerable and can be easily stressed. They so desperately want to be ‘normal’ and do the things other so-called ‘normal’ people do. Those living with a person with a mild/borderline intellectual disability can fully understand their frustrations, which often present as behavioural problems, temper tantrums or depression, which put huge pressure on the individual and the family unit. This often places a great strain on parents and siblings because of the situations they can get themselves into and because there is little support available for these families. We have heard of cases where the strain on parents has led to marital breakdown.
The chronological age of persons with a mild/borderline intellectual disability does not reflect their functioning age. If they have associated problems, their emotional maturity level may be significantly below their chronological age. In the community, people don’t always understand or make allowances for these children. Often parents feel they are being held responsible for their child’s inappropriate or unacceptable behaviour. If the child looked disabled, maybe parents would at least not have to explain or make excuses; their plight might be viewed more sympathetically. The reality is that as each milestone is reached in these children’s lives it brings more challenges and problems.
The main issues of concern to parent and carers are:
- Schools—the pros and cons of mainstream vs special schools. Which would provide the better education and social skills training, help and support? Which would be the safer environment for the individual child? Which would allow them to reach their full potential? One parent was able to give the example of an excellent special school with a multidisciplinary team and which provides individual education plans for each child, vocational training, career advice, job placement and support for parents and pupils. Borderline is not aware of any other school with similar facilities.
- The adolescent years are a particularly difficult time for all teenagers, but worse for the teenager with a mild/borderline intellectual disability. Generally at this period in their development, their parents realise the true extent of their situation. Some adolescents’ problems are more acute than others and they may have longstanding consequences. They often experience peer pressure and because of their vulnerability, naivete and innocence, they are prone to be taken advantage of. During this period some may find themselves involved in criminal activity or drug abuse. We in Borderline are aware of a number of these cases. Because of the state’s failure to provide suitable facilities/accommodation for these individuals, when their cases reach the courts, the judges have no alternative but to send them to prison or to psychiatric institutions. Sadly, many of these individuals have low educational and occupational attainment.
- Supported employment is seen as a significant benefit; nearly all those with mild/borderline intellectual disability need some form of guidance and supervision. Most parents who took part in the survey believe that supported employment is an essential ingredient for achieving success in the work/training place.
- Open employment is a huge area of contention. We are aware of successful placements in open employment—with ongoing support this has led to positive and successful results. But generally parents spoke of bad experiences encountered by their child. If their child was lucky enough to get a job, it generally didn’t last long and they never progressed. They did the same mundane job, without promotion and they saw others pass them by, making them feel inadequate. Many found it extremely difficult to sustain a job for long. It was not unusual for many to have their job terminated. Many parents described how they had pleaded with an employer to give their child another chance. They are often exploited in the workplace, not receiving the same level of pay as their follow workers. Many were only capable of, or were only offered, part-time employment, spending the rest of their day bored and lonely.
- Nothing to do all day—we are aware of a number of adults with a mild/borderline intellectual disability who fall into this category. Repeated failures, rejections and lack of understanding of their disability have, over time, led to this situation.
As a result of all these issues, many adults with this disability have very low self-esteem, they are lonely and their social life is often very limited. Sometimes life seems too difficult and unbearable for these individuals and the consequences can be tragic. Employment for many is not just a job; it is much more; it is their whole life, a feeling of self-worth and a reason to get up each day. It may be their only social outlet, as well as a much-deserved break for their families
Recently, Borderline was very pleased when Mr John Lonergan, Governor of Mountjoy Prison, accepted an invitation to speak to the membership. Many parents were shocked, but others were not surprised, when he said that ‘26% of inmates in Irish prisons have an intellectual disability and 40% of homeless people living on our streets also have an intellectual disability.’
Borderline has listened and has taken on board everything parents/carers have said; it’s the parents who are the real experts when it comes to their children needs. Persons with a mild/borderline intellectual disability have the same needs as the rest of us in terms of education, employment, social inclusion and sexuality etc. So many parents said they worry about what will happen to their family member when they are no longer there, and they wonder who will help guide and protect them. There was definite agreement that siblings should not be expected to take over the carer’s role in such event. They realise that if it is at all possible provision should be made well in advance of the eventuality.
Borderline has adopted a policy document based on the information collected about the specific needs of those with a mild/borderline intellectual disability. We are now ready to go forward using a practical approach. With the backing of FÁS, we are currently working towards setting up a resource centre in Dunshaughlin, Co. Meath, which will uniquely cater for those with a mild/borderline intellectual disability. FÁS has agreed to the initial funding. We have a facilitator for the project who is very committed and confident that the project will succeed. Initially it is hoped the centre will cater for six trainees. It is envisaged that there will be high-quality work, neither mundane nor repetitive. It is proposed to provide sustainable jobs within the vicinity of Dunshaughlin, with the support of job coaches. Leisure activities and a social skills programme will also be provided, as well as a ‘drop-in’ facility. It is early days yet and a lot of work still has to be done. If successful, the project could spread to other areas around the country.
Mild/borderline intellectual disability is a hidden disability, but the problems that somehow seem invisible to many can be a nightmare to others. A parent commented on his son’s condition: ‘if it was worse, it would be better.’ We in Borderline are committed to changing the past, to strive forward in order to give our group the right quality of care, employment and the social outlets they so desperately deserve, and need.
If you feel you could be of help or want to support Borderline, or if you would like more information on the resource centre project, please contact our Honorary Secretary, Angela Carney, tel: 01-8316924 (after 6.00pm).