Q. Financial Embarrassment
My daughter attends a training centre run by a voluntary organisation. Music and yoga classes are ‘extras’ which she can attend, but there is an annual fee of approximately €150- As a widow on a fixed income, I cannot afford this, although she would benefit greatly from such classes. I am too embarrassed to tell the centre about my financial situation. What should I do?
You are unlikely to be the only parent in this position and I suspect your social worker is aware of people who also find it a strain to cover all the costs that a service might demand. Ask your social worker to bring the topic of music and yoga being extras up for discussion with the service manager. My opinion is that they should be part of the regular curriculum. If the service will not include them in the general curriculum then you might consider asking if they might think about a reduced fee for people in your circumstances or if they would be prepared to accept the fee in instalments, over the course of the year.
- Q. Conflict of interest
I am a staff person trying to support a 30-year-old woman to achieve a personal life plan. She has definite ideas about how she would like her life to go, but her parents absolutely refuse to let these things happen. I am charged to support the service user, but my manager tells me that we are a service for persons with learning disabilities and their families. This puts me in an invidious position, because supporting the service user means that I am at odds with the family. Have you any advice?
I assume you have had extensive discussions with the family and now find yourself at an impasse. It is my belief that the interests of the service users are paramount and that you are fulfilling your duty by being a strong advocate for the wishes and desires of the service user who is an adult. The reality is—as you are finding—that this can at times bring you into conflict with families and with management. In practice, beyond seeking to appeal decisions that you believe are not in the client’s best interest, to the agency or to the health board, there may be little else more you can do. You might also seek to raise this as an issue at a more general forum–perhaps at a NAMHI meeting, with the Federation of Voluntary Bodies or within your own professional body.
- Sensitive issue
I am a separated parent with an 8-year-old boy who has a mild learning disability. He attends his local primary school. He is toilet trained by day and by night, but he needs reminding to use the toilet even for urination. For a number of years he has had difficulty with defecation. For days he has no bowel movement and then there can be slight soiling and eventually after about five days he has a full bowel evacuation while he is asleep. There has been a family trauma in recent times, but the problem preceded that trauma. I have tried medication and medical intervention, but there has been no improvement. What can I do? I am desperate.
I really sympathise with your difficulty, as it must make life so hard for both your son and yourself especially now that he is enjoying being in his ordinary local school. There can be many reasons for this type of problem, and it may be physical or psychological. As it has been going on for a number of years the most important thing is for him to get a thorough physical examination from a really top-class paediatrician. If nothing shows up, then you can get a psychological/psychiatric evaluation. While you are waiting for an appointment, might I suggest you take detailed observations of the full cycle between bowel evacuations and note what is happening for your son during this period? The paediatrician, psychologist or psychiatrist should find your observations helpful.
- Being heard
My daughter with special needs has a minor hearing loss which requires her to wear one hearing aid. The health board’s several efforts to make an ear mould have failed. The appliance scratches her ear, and numerous adjustments have been unsuccessful. Is there a grant available for us to buy a commercial aid which she might be able to wear without irritation?
Obviously you have been in contact with an audiology service which has advised you about the range of suitable hearing appliances for your daughter. They should also be able to advise you about grants provided by the health board for some or all of these appliances. If you do not want to ask the health board audiology service, your social worker may be able to advise you on your grants, entitlements and other audiology options.