Working with the profoundly/multiple disabled child/young person has been called the ‘ultimate challenge’ for professionals, parents family and the community at large. |
| What is profound disability? This is a multiple handicap in one individual, a person with severe brain damage, causing non/partial sight, hearing impairment, incontinence, no mobility, no speech severe learning difficulties and understanding of their environment. An individual can have all the above disabilities or a combination of them to be seen as profoundly disabled. Through the phase ‘profoundly disabled”, there are classifications from moderate to high through too severe. |
| Since MENCAFEP’s inception, it has operated a section specifically for the profoundly disabled. It is the only day-care facility for the profoundly handicapped child in Sri Lanka (possibly South Asia). |
| Due to their disabilities, not many multi-handicapped children are able to reach full adult maturity. Over the years, MENCAFEP has lost 20 such children. |
However, MENCAFEP has a philosophy of working with the severely handicapped child. MENCAFEP believes the purpose of the profoundly disabled is to be joyful. That is what they are there for, to bring joy, to give joy. |
In all its work with the handicapped, MENCAFEP practices, that human worth and dignity of the individual, however disabled is the most important aspect of its work. |
With the profoundly handicapped all forms of stimulation are used to bring out their full potential, which is very important. To bring out this full potential can at times be very exhausting. The worker must be multi-disciplinary and ideally have a one to one relationship with the child, to bring out the best in her/him. |
Along with the standard activities such as muscle stimulation/physiotherapy, speech therapy, soft room play (Mencafep has a stimulation room, fully padded, bright, with lots of cuddly toys and equipment), music, touch and stimulating the senses. MENCAFEP has tried to devise new ways, to bring out that potential and more acceptance within the community. Pet animals, such as rabbits, turkeys, ducks and birds have been introduced into sessions. Walks have taken place; so the children have been able to stimulate their senses with the environment, providing stimulation as well as being seen as part of the community. Other areas explored have been arts and crafts, especially clay and mud work. |
It must be stressed that where ever and when ever possible these children are integrated in with the other children’s activities. |
MENCAFEP has now taken it’s unique work with the profoundly disabled child and family an exceptional step further. By setting up residential cottages, enabling MENCAFEP to start its respite care centre (RCC). With these cottages now built they are the first of its kind in Sri Lanka and possibly again, the first in South Asia. |
Through the help of Hope for children UK, Friends of Sri Lanka UK and well-wishes around the world, enough funds have been raised to; buy land and build these cottages, which have taken nearly two years to complete.
Special thanks must go to Freres de nos
Freres and The Michel Exertier Fund of
Geneva, Switzerland, as well as The St.
Imelda's Fund of the Netherlands, who gave
funds to help construct three other
Respite Care cottages. |
These cottages are semi detached housing for children/young people, with a small living area and toilet showers facilities, cared for by two housemothers. |
From the very early days of MENCAFEP the parents have asked the question;” what is going to happen to my child when I get old?” “What happens to my child when I die?” |
As a multiple disabled child grows older, parents also grow older, the profoundly disabled child becomes more and more difficult to handle. After 18 years of existence, MENCAFEP is addressing this question through respite care. The idea of respite care is to give a rest to the families who care for disabled people, especially the profoundly disabled. This breathing space can be anything from a weekend to one month, depending on the families’ situation. |
MENCAFEP believes that this care is needed as parents start to grow elderly. It gives them a rest, a chance to recharge the batteries with a better chance of the disabled child/young person staying with and in the family. It also gives the disabled child/young person a new environment to be stimulated by. |
The above is very much linked to MENCAFEP’s Profoundly Disabled section. Has as been mentioned, Respite Care is unique to Sri Lanka and again MENCAFEP believes to South Asia also. Hopefully, it has been explained that nobody in Sri Lanka (South Asia?) is working with the profoundly disabled child like MENCAFEP is, in a positive, nurturing and loving way. Looking at the holistic picture of the multiple disabled children, the child’s welfare, health and the child’s family. |
Let us be honest, the majority of these children are locked away and left to die,’ out of sight, out of mind’. Or in some cases even killed. MENCAFEP believes that these children and their families have a right to dignity and a right to life! |
MENCAFEP however, still requires assistance in this unique endeavour. The RCC is of immense benefit for children and their families, those are the forgotten of many communities around the world, especially the communities of the developing world. |
WORKING WITH DEAF CHILDREN IN SRI LANKA
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| Photographs and Articles by: Chris Stubbs |
