Rapid Responses to:
|
|
Rapid Responses: Rapid Responses published:
-
![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Study matches observations in third world
- Rajan TD (6 November 2006)
-
Don't forget Partnership with Parents and Social Inclusion needs to be considered as well
- Brid Farrell (10 November 2006)
-
Changing Professional Attitudes and Building a Future with Parents
- Jill M Randall (10 November 2006)
-
What's Next?
- Mary Duffin (13 November 2006)
-
Disability is a blessing in disguise
- Latha Rajendra kumar (13 December 2007)
-
Re: Disability is a blessing in disguise
- John P Heptonstall (17 December 2007)
-
The Challenges of Disability in the Third World
- Ravivarma Rao Panirselvam (19 March 2009)
|
|
|||
|
Rajan TD, Specialist Skin & Sex Transm Diseases CMPH Med College, Mumbai, India, Tel: 9122-66982747
Send response to journal:
|
The study has brought out facts which were obvious to health care workers and physicians in the third world. In fact physicians in developing countries expected better standards of living among families of disabled children in the western countries. Parents of disabled children have to spend large sums of money in the upbringing and rehabilitation of such a child. Consequently. it affects the ability of the parents to adequately engage in their own profession. Eventually it affects the amount of attention paid by parents to other children of the family. In the final analysis, it lowers the economic standards of such a family as the well-bodied children too suffer from the skewed financial state. Social welfare schemes of respective countries barely manage to scrape the surface of the problem. Providing income tax concessions to parents of disabled children is one of the most attractive schemes currently available in India. Yet, this benefit goes only to those parents who are earning enough to pay taxes. One hopes that the present study allows welfare departments, all over the world, to assist parents so as to think of better schemes to help families having disabled children. Competing interests: None declared |
|||
|
|
|||
|
Brid Farrell, Consultant in Public Health Southern Health & Social Services Board, Armagh, BT61 9DR
Send response to journal:
|
It was good to see childhood disabilty feature in the BMJ. The editorial described many of the difficulties faced by families of disabled children but did not refer to other approaches that have been shown to make a difference to disabled children and their families. The aim of services for disabled children should be to enable disabled children to reach their potential and become valued members of their family, school and local community. Disability services need to adopt a partnership approach with parents. Many parents become experts in their child's condition, frequently knowing more about their child's condition and progress than members of the nultidisciplinary team. Services need to acknowledge and accommodate this expertise. Person Centre Planning (PCP) facilitates individualised approaches to children by involving family, friends and professionals and considering what is needed now and in the future for the disabled child. Direct payments and Microboards can facilitate a PCP approach. Currently many disabled children are excluded from valued childhood experiences because their needs are not taken account of in the planning and delivery of services by various agencies. A "normal family life" is difficult without support and school holidays are often dreaded by parents. Health and Social Services cannot address the social exclusion experienced by these families without other agencies such as housing, education, leisure and transport adapting their services to ensure disabled children are fully included. Finally, the importance of co-location of services and agencies into locally based "one stop services" (or Wraparound services) should be recognised. Besides improving team and interagency working it provides opportunities for parents and siblings to meet other parents and siblings with similar life experiences which can help reduce social isolation. Competing interests: I chair the Wraparound Project for disabled children in the Southern Health and Social Services Board |
|||
|
|
|||
|
Jill M Randall, ex-consultant radiologist, (due to caring responsibilities for a child with autism) home
Send response to journal:
|
I was pleased to read the above editorial, as it draws attention to the terrible state of services for disabled children and their families but should this be necessary? The fact that financial hardship and stress follows inadequate services for disabled children should be as obvious as night follows day to all health professionals and politicians. The sad fact is that with no "big stick" such as targets or votes to drive the agenda, and with families too overburdened to fight, the appalling situation continues. As the article points out the number of affected children is increasing as is the severity. Until recently even this point was contested in autism as an effect of changing diagnostic criteria, but recent articles in the Lancet may mean that the profession will have to start to face the reality. Whilst more money is undoubtedly needed to improve services, much can be achieved by changing attitudes at little expense.With autism there is a long history of distrust between professionals and parents starting with Bettelheim and the refridgerator mother. Subliminally this still affects the attitudes of many to this day. Patronising and insensitive handling of parents, especially in the early years, causes problems and ultimately expense for years to come. A recent BMJ book review obliquely referred to proactive parents as the chattering classes(1). With such derogatory attitudes how can we build a culture of mutual respect. If professionals are confident in early diagnosis and interventions then much money and stress can be saved at a later stage(but not within this year's budget). A multiagency approach can not be achieved if, as happens, the LEA and PCT bounce responsibilities in order to balance budgets. As the authors state, key workers can help prevent this.But isn't this what a good community paediatrician should be doing anyway? Many authorities, in an attempt to be seen to be doing something at minimum expense, are using teaching assistants and nursery nurses for this crucial role. Has anyone stopped to think that this might undermine the already damaged confidence of parents. Parents need expert sensitive advice not any old advice. A cheap service is actually worse than no service. 1. Book review of "Daniel isn't Talking". Carles Essex. BMJ May 2006, 332;1159 Competing interests: None declared |
|||
|
|
|||
|
Mary Duffin, Chair, Parent/Carer Council on Disability Southern Health & Social Services Board, Armagh, BT61 9DR
Send response to journal:
|
We commend the article for stating the facts so accurately but are very concerned at the point of this article unless influence is brought to bear to improve the services for families with disabled children. We support and would encourage parent/carer involvement at all levels to deliver a Person Centred approach to improve the lives of our families ensuring inclusion within the wider commumity at all times. Competing interests: The Parent/Carer Council are a group of parents and carers of disabled children |
|||
|
|
|||
|
Latha Rajendra kumar, Physiology unit, Faculty of Medicine, Asian Institute of Medical Science and Technology, Sungai Petani,Malaysia
Send response to journal:
|
Sir, I grew up as a disabled child in a beautiful family. The perception of disability by an able person is very different from what I see it as. I consider it a great previlige that I am like this. I was a 2 year old when I had polio in Mumbai, India. What my parents went through was hell. But sheer determination , will power and love has made us an envy of everyone. I know all are not this fortunate.And the road for achievement and content is very tough. But my family has showed me and taught me that nothing is impossible.My mother has gone through lot of stress and swallowed her pain. But she has told me always to depend on myself and my education. I often talk to my students how my family support has seen me through. In fact I had the most happiest childhood. Today a a doctor and teacher my disability has made me sympathetic and good listener. My disability has stopped me from unnecessary gossip and entering into bad ways of life. It has made me understand the value of life and above all God. Every step I walk with difficulty, I am amply rewarded by the supreme being. I realize the value of goodness, strength and mental toughness. Is this possible if I was "normal". No. My husband takes pride in my disability. My 2 beautiful children are the greatest support. They say I am a understanding mother only beacuse I am disabled. Infact they are so proud that they think their disabled mother is "Normal". I understand the various constraints of the family members , but disability can bring out the best and outstanding qualities in you also.My husband has also taught me to ask for the previliges we are due for in public places.Without being shy. I see disability like this: When things cant be done easily by me like by normal people, I push myself and do it. Most of the times the results turn out to better than others. When I walk into exam hall with great difficulty, I bite my teeth and say to myself," I will write the exam in such a way that no normal person can write". And I got outstanding results in my medical school. My patients love me because they see their own suffering in me and can vibe well with me. One of my wishes is to see that other disabled people have a good life and they can learn and teach the fact that disability is indeed a previlige and blessing. Latha Rajendra Kumar, MD Competing interests: None declared |
|||
|
|
|||
|
John P Heptonstall, Director of the Morley Acupuncture Clinic Leeds LS27 8EG
Send response to journal:
|
Such a thoughtful and inspiring message from Latha Rajendra kumar whose patients must be blessed. John H. Competing interests: None declared |
|||
|
|
|||
|
Ravivarma Rao Panirselvam, Second Year Medical Student AIMST University, 08100 Bedong, Kedah, Malaysia.
Send response to journal:
|
While parallels maybe cited; children in the third world are disadvantaged in the number of options made available to them in life. I feel that it roots back to the lack of empowerment of parents who are pivotal in developing the child's psyche. Taboo thrives in third world societies in which only sympathy and sadly shame is what that parents encounter in norm. They get demotivated and this affects the child; creating an invisible limit for achievement. What needs to be done; is more empowerment, national and international standards of management including parental counseling and support whenever a child is diagnosed with disability. Grass-root support groups as well as integration into general society to give confidence that everyone is a stakeholder thereby become important. Empathy is what we are looking for and empowerment is what we need. Ravi Competing interests: None declared |
|||