Shelter

Caring for any child with a disability involves the provision of a safe environment with the necessary support, adaptations and equipment to enable care within the family unit for as long as it is required and independent living when and if it is wanted. If either of these options are not possible, then any establishment that provides residential care to children with disabilities should adhere to the same guidelines with emphasis on safeguarding regulations and high standards of palliative and end of life care as required. The care provided should be planned in collaboration between Health Professionals, care givers, parents and the child with consideration of specific physical, psychological, educational, social and medical needs and in the best interests of the individual child.  With a life limiting condition the aim should always be to achieve the best quality of life possible and assist children to fulfil their potential in an environment of love and hope. In Europe and the USA/Canada policy makers within government collaborate with Health care professionals, architectural design experts and National Charities to ensure the aim is the provision of the best possible environment for disabled children whether at home or in residential care.

In Iran there is much variability in living conditions and finance often dictates access to suitable accommodation and the availability of the adaptations required to care adequately for a disabled child. Poor families struggle to provide even the basic needs of Duchenne children. Many of the care homes and institutions that inevitably look after these children when they need palliative and end of life care are underfunded and inadequate leading to unnecessary suffering.