The Child with Special Needs from South Asian Communities

1. This presentation relates to the finds of a study tour to Pakistan. The lessons learned would be used to improve the care of children with special needs from the Pakistani community of Edinburgh and beyond. Special needs is a general term meaning care needs because of physical or intellectual disabilities or a combination of both The Child with Special Needs from South Asian Communities Improving health through community and health staff education James Robinson Royal Hospital for Sick Children Edinburgh, UK

2. The Winston Churchill Memorial Trust was founded to honour the memory of Sir Winston Churchill. The Trust provides funds to British citizens to travel any where in the world to carry out projects. The results of these projects are to be used to the benefit of British society. A Health Promotion Development supported by The Winston Churchill Memorial Trust

3. Concerns had been raised in Edinburgh regarding the quality of service given to children with special needs from the Pakistani community. There was evidence that some school nurses did not understand the needs of children and families from the Pakistani community. This lack of knowledge encouraged the formation of negative stereotypes. These stereotypes in turn resulted in reduced quality of care. At the same time a local support and information group was concerned about the impact of negative attitudes within the Pakistani community itself. This negativity within their own community was felt to add to the care burden for the family. Issues Encountered • Quality of service provided in school health service • Reluctance of families to use supports from within own communities

4. There was evidence that some school nurses did not understand the needs of children and families from the Pakistani community. This lack of knowledge encouraged the formation of negative stereotypes. These stereotypes in turn resulted in reduced quality of care. A negative cycle of cause and effect was set up. Nurses believed parents were not willing to participate in the care of their child. They therefore did not encourage parental participation. Lack of encouragement then led to lack of parental participation Issues Encountered Quality of service provided in school health service • Lack of awareness • Stereotype • Lack of participation

5. Parents were reluctant to use supports based in the community. This seemed to be the result of negative perceptions of disability within the community. This undermines the confidence of the parents and leads to both a sense of isolation and actual social isolation. This isolation adds to the care burden of the family. Issues Encountered Reluctance of families to use supports from within own communities • Stigma • Lack of confidence • Isolation

6. To add to the burden already faced by children and their families are discriminatory attitudes with the general population. Minority ethnic children with special needs can suffer what is known as ‘double jeopardy’. That is they suffer the consequences of prejudice toward both those with disabilities and those from another ethnic group. Issues Encountered Wider society • Discrimination toward those with special needs • Discrimination against those from minority ethnic communities

7. Pakistan was chosen as the area for the study tour for a number of reasons. The largest minority ethnic group in Edinburgh is that of Pakistani heritage. By travelling to Pakistan the effects of racial discrimination could be eliminated. The origins of beliefs and attitudes within Pakistani society could be better explored. It remains common practice for young people in the UK to find their marriage partner in Pakistan. This on going link with society in Pakistan means attitudes within Pakistan can still influence those within the UK Why Pakistan? • Largest minority ethnic group • Eliminate effects of racial discrimination • Trace back ongoing beliefs and values • Continued links through marriage

8. Poverty within Pakistan has a number of impacts. In part it creates a situation where the risk of disability is increased; facilities are limited by lack of resources; families cannot afford to access some services. The Government at national and regional level provides some facilities but is dependent on others to provide most care. Some parents seek out alternatives which seem to offer faster solutions than rehabilitation. These are not always appropriate or successful. Situation in Pakistan • Poverty • Limited facilities • Dependence on private / non-governmental organisations • Social stigma and isolation • ‘Quick fix’ solutions

9. This young lady lives in a residential unit. She is one of many who have been abandoned by their family. Partly poverty and difficulties in caring for the child drives families to place their children into residential units. However social stigma leads to the family breaking off contact and abandoning the child. This particular facility was overcrowded and in poor repair at the time of this photograph. However a new purpose facility was being constructed.

10. Rehabilitation is a slow process. Families therefore sometimes seek alternative solutions which seem to offer quicker outcomes. These alternatives are not always appropriate. This child has bilateral talipies. His family took him for surgery. While the operation is fairly straightforward good after care is needed. This was not available to this child and as a result he developed contractures and ended up in a worse state than he started. He is now undergoing rehabilitation in a voluntary group.

11. There are active efforts to improve the situation for children with special needs and their families. These are aimed both at improving care and improving attitudes. This activity involves Government, voluntary organisations and individuals. There is a gradual improvement taking place Situation in Pakistan • Positive Government Action • Awareness raising programmes • Community Rehabilitation • Gradual change in social attitudes

12. The Hamza Foundation is one of many established by individuals or voluntary groups. The Foundation was established by a wealthy business man. He used both his wealth and business skills to set up the Foundation for children with hearing impairment when he could not find suitable facilities for his daughter who has a hearing impairment. The foundation provides state of the art facilities equal to any in Europe or the USA.

14. This small shop is located in the Al-Umeed centre. The shop is part of the children’s social skills programme teaching them how to deal with money and carry out shopping. Al-Umeed is another organisation whose foundation was triggered by a parent dissatisfied with available facilities, in this case a mother of a child with cerebral palsy.

15. Skills training in a Government training school. Those with disabilities are undervalued. Giving a skill has many benefits. It shows the disabled person can make a contribution to their family and society. The individual benefits from earning power and the feeling of self-worth. There is the added benefit that having skills improves marriage prospects. Here girls are learning to produce knitted goods.

16. The same Government centre. Here boys are learning to repair and build electrical equipment. Skills are taught which are appropriate to the prevailing social norm.

17. Community Based Rehabilitation Programmes play an important role not only in providing skills and education for children with special needs but also in improving attitudes in society. Here we see a school run in a mother’s own home. The lady is a community support person trained and supported by which runs the programme. Keeping children in the community improves their chances of acceptance and social integration.

18. Insh’Allah is an expression meaning God Willing. It can have a double effect in regard to disability. On the one hand it can produce a fatalistic approach suggesting nothing can be done for the child and therefore parents should simply accept their child’s fate. While this interpretation did exist and did influence the care given to some children the parents interviewed during this study tour did not hold to this view. They used the expression to mean that while God ultimately decided what would happen as parents they had a duty to try to improve things for their child. It helped them cope rather than give a reason to do nothing. Situation in Pakistan Insh’Allah A double sided attitude - Disincentive + Coping mechanism

19. The findings of the study tour will be employed in staff training programmes in Edinburgh. In this way the quality of service will be improved. Transfer of knowledge and experience Staff cultural competence training • Challenge stereotypes • Improve awareness of family beliefs and attitudes • Improve collaboration with parents = improved health through improved services

20. Similarly the findings will be applied in community work to improve attitudes and support within the community Transfer of knowledge and experience Community development • Challenge attitudes • Reduce isolation = improved mental health through community support

21. Some work in this field has already taken place in Edinburgh through a voluntary organisation. Regrettably this voluntary organisation has gone out of existence but its work will not be wasted.