KH Chan

Rehabilitation is defined in the United Nations World Programme of Action Concerning Disabled Persons as "a goal oriented and time-limited process aimed at enabling an impaired person to reach an optimum mental, physical and/or social functional level, thus providing him with the tools to change his own life. It may involve measures intended to compensate for a loss of function and other measures intended to facilitate social adjustment". Some examples of disabilities are hearing and visual impairment; mental illnesses; learning disability; cerebral palsy and other physical handicap.

As at 30.9.97, there were 129,345 records of people with a disability in the Central Registry for Rehabilitation in Hong Kong. Among these records, physical handicap forms the majority (47.2%), following by mental handicap (18.5%). There were 14,202 records of disabled persons aged 15 or under. As reporting to the Central Registry is entirely voluntary, the coverage of the Registry is likely to be incomplete and there should be a much higher number of disabled persons in Hong Kong. According to the Green Paper on Rehabilitation (1992), there is a projection of 287,000 disabled persons by the year 2001.

Regarding paediatric rehabilitation, there are a number of services available for the rehabilitation of children with learning disabilities in Hong Kong. Examples are EETC (Early education and training centre), ICCC (Integrated Child care centre); Special Schools for blind, deaf, physical handicap, mental handicap (mild, moderate & severe) and multiple handicap. Child Assessment Centres and Hospital and Outpatient facilities are also available for children with neurodevelopmental disabilities.

Unlike other medical professionals working with other specialities, those working with rehabilitation must address the issue of functional capabilities and potentials of our patients. By the time the child is referred for rehabilitation, he has already undergone the tedious process of diagnostic workup and life saving treatment and was left with various degree of disability. Functional assessment forms the basis of every rehabilitation plan. Potential identification and setting of realistic goals is the next step. Identification of the carer at home, followed by parental counselling and support is the most important part of management. A process of regular review and assessment is then implemented and, when indicated, readjustment of goal oriented care plan is considered.

It must be stressed that in the majority of the time, the child is not looked after by the medical doctor. A multidisciplinary team work in very important. Rehabilitation personnel might include nurses, teachers, occupational therapists, physiotherapists, prothetists, orthopaedic surgeons, audiologists, speech therapists, dietician, psychologists, child psychiatrists, geneticists, rehabilitation engineers and most importantly the carer and family of the child. The child might not need all the services. However it is preferable that those who are involved should have the opportunity to review the care plan at the same time, e.g. in a case meeting. It is therefore important to have a co-ordinator who are familiar with the care plan and whom the family could readily consult.

The ultimate aim of any care planning is to minimise handicap in a patient requiring rehabilitation. Impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function. Disability is any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being. Handicap is the disadvantage for a given individual, resulting from an impairment or disability, that limits the fulfilment of a role that is normal for that individual. What is normal for that individual depends on age, sex, social and cultural factors. It would be most desirable if any impairment could be corrected either medically or by surgical means. This would improve the ability and therefore lower the handicap. However other means to lower the handicap could be achieved through special education, individual training and the use of rehabilitative aids or even through a change in life style. Through these means, the same degree of impairment may not necessary result in the same amount of handicap.

With the advancement in medicine and technology, there emerge some newer modalities in rehab medicine. Botulinum A injection, intrathecal baclofen infusion, dorsal root rhizotomy and orthopaedic surgery have been used in the management of patients with cerebral palsy, producing good results when patients are carefully selected. Fundal plication and button gastrostomy allow severely disabled patients to received gastrostomy feeding instead of prolonged nasogastric tube feeding. Proper seating assessment and the use of modified seats and wheelchairs provide effective support for spine and also alleviates pressure and shearing forces on the sacrum and also improve the degree of mobility. This has greatly improved the quality of life for those who are non-ambulant. Environmental modifications and rehabilitation engineering improve the quality of daily living in disabled persons. Even in the severely disabled child, the use of augmentative communication allows some children to communicate and indicate their choices. Instead of long term institutionalisation, more families are willing to provide care for their disabled children at home while at times when they are under stress, respite services are made available.

Finally a word about hospice. The word hospice has been equated to "shelter, care and comfort". There is always the controversy on the management of severely disabled children who are severely brain damaged, totally immobile and non-communicative, totally dependant with regard to activities of daily living and quite often suffering from multiple medical problems. It is in this group of children that shelter, care and comfort are far more important than drips and tubes in all directions. Poor indicators of hospice care are cold sores and poor body hygiene. Perhaps I would end this discussion by quoting a conversation from Richard Lamerton (1975). He was asked this question "What sir would you do if you walked into a hospital room and saw a "vegetable" in the hospital bed?". His answer was "I would eat it. What kind of vegetable are you talking about; a broccoli?" If you are talking about a human being, I would take good care of him."