At the time of hearing the news that your child had a disability. Did you have an understanding of the lifelong commitment that was in front of you?
Not at all. J. progressed normally until she was very ill at the age of 4. We were very worried whether she would survive and get better, but it never occurred to us then that she might have a need for a disability service. I don’t think anyone thinks about the long-term at a time like that. We just dealt with the news as we received it. It took a long time to come to terms with the disability, once we became aware of the fact. And then it took much longer to find an appropriate service. She started in normal school.
It became evident that C had a developmental delay from the time he was about a year old—but there wasn’t a specific diagnosis. I suppose we had a couple years to come to terms with the idea. In fact, I approached Namhi (as it then was) for information—if I remember correctly, at that time you needed to be recommended by someone in order to become an individual member! I think the health clinic liaised with an ID service in our area, and a social worker called to us to introduce their services when C was three. So our understanding of the extent of C’s disability came gradually, and we did receive support from the ID service, once he attended, about a year later.
In trying to achieve a ‘normal life’, what were the biggest challenges?
Life was ‘normal’ for a while when J. began school, but we soon realised that she wasn’t coping in the national school, and a psychologist said we should find a special school. A special class was all that was offered in the first instance, and that was a very trying time; it didn’t really work out. There was a long waiting list for a special school in our area, so she only got in there when she was 8. And then she was able to blossom, thankfully. During the time J was in school, we lived as normally as we could, as much as possible.
C. also spent an unhappy and unsuccessful year in a special class in a national school. But from 6-16 he was in a special school. Although probably not ‘stretched’ as much as he could have been, he was happy there and the experience was very largely positive. Perhaps because C is the youngest of our children, our family life was not affected hugely, although there were some psychological and behavioural issues, and we spent several years. Fortunately, C had no major health issues, although he needed private speech therapy for some years.
Sisters and brothers often identify the demands that their disabled brother or sister has made on them, but have there been some positive contributions?
J has just one sibling, and she is very conscious of her role, and sometimes worried for the future, when it will be down to her to look after her sister. In some ways she had put her life on hold, despite proceeding in her own career. The positive contribution is that they are great friends—they go everywhere together, when time permits. When they were younger there may have been a bit of understandable jealousy because of the extra attention J received from us.
I think overall C’s siblings reacted very well to the fact of C’s disability—perhaps it was helpful that they were already involved with their own friends and pastimes. I think maybe they did, maybe unconsciously, know we had enough on our plate and tried not to bother us with some of their concerns. They both acknowledge that they developed valuable insights by living with someone with a disability, and that may also have been a factor in one of them choosing a caring profession.
Over the years what has influenced your approach to the help from ‘professionals’ associated with service providers?
We had to fight for a place in a special school for J, via a local politician. That was good, then, but the same problem arose after school—when again no appropriate service was available for some time. After a battle she got three years’ ESF funding in a service, but when that finished, we learned we were not in the correct catchment area, and J. sat at home for a year. Eventually we found a day service that, thankfully, has continued to work out quite well for her, although there are always financial constraints, and there is often no well-designed programme for people with mild disabilities. On the whole, the people who have dealt with her have been fine, even when there are lacks in the service design.
I’ve enjoyed quite a good relationship with the organisations who have provided services for C. Of course not every professional is proficient and 100% dedicated, but very few of them have failed him. I quite naturally got involved in parent organisations along the way, which may have made it a bit easier to talk with service staff. Because I’m aware of the financial limitations of the services, and the greater needs of many other service users within the organisation, perhaps I haven’t been as strong a personal advocate for C as I might have been. We only sought major changes in his services on two occasions, I think.
Looking back, do you think the disability payment made to young adults before the completion of their education is a good thing?
While the Disability Allowance (DA) was very welcome, and J was able to use it herself, from the time she began to receive it, I don’t think she really had a need for it herself until she left school. I think it should only be given at 18. The Children’s Allowance and the Domiciliary Allowance should be continued until the child with a disability reaches 18—and then they should receive the Disability allowance for themselves.
I am not in favour of the DA being provided to under-18s—it is an adult allowance. I understand that no family wants a reduction in disability funding, but it’s important that the DA should be provided to the person with the disability, not for his/her family.
Looking back – what supports, in an ideal world, would have made a significant difference to those that you have received?
I would have liked more input from psychologists, and to be kept informed better on what they considered to be J’s issues at each stage. That might have helped us to be more aware of any problems before they blossomed fully. Generally, more information about what was happens in the day service.
More frequent feedback sessions, sharing of personal files with the family, family therapy perhaps.
The absence of friends continues to be a recurring theme for most people with an intellectual disability—how do you think this gap could be bridged?
Yes, there is a major absence of friends. J. uses TV and radio as her ‘friends’ and we largely have to organise her social life for her. I think it is harder for girls too—because she isn’t as able to make casual acquaintances when she is out. Her work colleagues have been very good and include her in several things, but staff members change often and the younger ones don’t know her very well. She loses patience when people drink at parties. She has dated sometimes, but finds it hard to keep friends and personal relationships.
This is a very big issue for adults with disabilities, and I’m afraid I’ve no advice to offer! Several people in C’s community have been very supportive and have great time for him. But it is very much on his terms, because he doesn’t understand the give and take of real friendship.
Parents often worry about their son or daughter forming relationships and yet it is a very normal thing for people to do. What advice would you give to parents and carers?
J has had boyfriends, but nothing long-term. She connects emotionally more easily with TV characters and celebrities or pop idols. I suppose my advice would be, if your young person forms a meaningful relationship, stand back and support it, even though you may be nervous about it. There are support groups, both for individuals and for families.
Ah, I’m not in a position to offer any advice on this one. C seems to lack the emotional maturity to sustain a serious relationship, but I think he is sometimes aware of that lack in his life.
If you had control of the disability budget what innovative programmes would you support?
I would like service providers to sit down with service users and their families and work out realistic, personal, tailored programmes, not generic, take-it-or-leave-it ones. A day service offering an imaginative menu of what is available. If there were individualised funding, perhaps a voucher system might work to pay for programme elements? I think there are several good ideas being developed by local organisations run by parents which can show the way ahead.
I’d like to see more openness and honesty from both service providers and service users and their families—and much, much more understanding from funders. I hate to see our people being used as political fodder between government accountants and cash-strapped ID services. If service organisations are demonised and their budgets choked off, they will be unable to offer (and improve) supports for people to access, with their envisioned individualised budgets. To make the best use of the resources-limited disability budget, we’ve simply got to work together.
In conclusion, the mothers I talked to wanted to emphasise that, despite the problems they had encountered along the way, having a family member with a disability has enriched their lives and in many ways it has been a positive experience for them. They are very proud of their children’s achievements in coping with their disability.