From the July 1988 edition of Community Living
Edna Wallace describes the plight of a family that has fallen victim to the tug of war between health and local authorities.
Imagine, if you can, a young couple without any family history of mental or physical disorder, having three children with profound physical and mental handicaps.
The degree of handicap is gross without any known diagnosis, and the condition does not manifest itself during the first six months of life, so the couple start off believing they will have a normal child. Nor does the condition restrict itself to one gender; there are two girls and a boy. Debbie is now 23, Susan is 21; John is 19 years old.
In 1972, John was four and attending the day-care facility at the large ‘sub-normality’ hospital where I worked. All three children were without speech, incontinent and showed little response to the loving care given by the bewildered parents whose own life expectations had been shattered and who were beginning to accept that more than love and home care would be needed as their children’s individual needs were identified.
Both girls were placed by the local education authority in Rudolph Steiner boarding schools a considerable distance from home and each other. This meant miles of driving for the parents to visit the girls and bring them home for weekends and holidays.
I was involved in the subsequent fight to get the same quality of individual education for John, the worst affected by multiple handicap.
Boundary changes taking place at the time between Oxfordshire, Buckinghamshire and Berkshire meant complications and a consequent struggle over financial responsibility for these three children. Letters flowed between authorities, though the parents were rarely included in discussions. The children spent a lot of time at home until Berkshire Social Services and Health Authority took on board a holistic approach to the family, bringing relief for a time.
When the family had to move to another area, negotiations regarding responsibility for care, education and training had to be resumed. Both girls were finally placed in a private and voluntary home whee their individual needs could be met. DHSS funding, topped up by local social services, was agreed. The girls settled happily.
For John the story has become more complex. His condition is the worst, and he had to leave Steiner school after an operation for dislocated hips. He was thereafter permanently confined to a wheelchair. More recently, he has had surgery to remove the head of femurs in both legs because of muscle spasm.
Aged 16 years, John became resident in a Barnardo’s special school, well over an hour’s journey from his sisters. However, it proved a milestone in the care and support given to John and his family. The parents have visited frequently and co-operated with the school to help John feel secure and stable again. With regular home care throughout all school breaks and during recuperation from illness, and with the girls coming home to see John, the family has kept together and all three children show recognition and affection for each other.
In 1986, it was agreed that it would be in John’s best interests to remain at Barnardo’s school until alternative living accommodation was available. It was felt this might be in a small community unit planned by the local health authority. The unit was scheduled to open in September 1967 and John was due to leave school that July. When the scheduled opening was postponed until September 1988, the school was willing to keep John at Barnardo’s. It was assumed that social services would be responsible for fees, now that John had passed school leaving age, and that the health authority would take responsibility when John moved to their service.
During the three months’ school holiday, John was at home with his parents and there was no indication that there would be any change in the arrangements. With the full approval of the school principal, John looked forward to returning to an environment where he was happy and where his care, treatment and education would continue.
Forty eight hours before the parents were to return John to school, a letter came from the social services. Without any consultation with either the parents or Barnardo’s, came the command “Do not return John to school; there will be a place for him in a large mental handicap hospital, until the health service community unit is ready”. An unsolicited rider was added to the effect that this was “in John’s best interests”.
It was, in fact, in the best interests of the social services department and their publicised ‘cuts’. It also indicated their failure to offer enlightened support to this tragic family or to know anything about John’s real needs. They even suggested that, as an alternative, John could live permanently at home.
The health authority refuse to take financial responsibility until John transfer to their service, either by admission to a mental handicap hospital or to a community unit, the opening of which is now not expected until 1989. Social services argue that they were not previously responsible for John, nor did they expect to be responsible for his care in view of his specialist needs.
In the event, Barnardo’s did accept John back in September 1987, hoping the relevant authorities would sort out their responsibilities and pay the fees. So far this has not happened and the fees remain unpaid. The parents refuse to accept that it is “in John’s best interests” to be admitted to hospital after all their years of struggle to attain for all three children a quality of life which is their right.
The private home where both daughters have settled have said John could join them at a cost (after DHSS allowances) which will be lower than that to the health authority of a place in the new community unit. The fees also compare favourably with what any social servicers department could provide. Placement in this home, possibly through joint-funding by both authorities, would mean all three children would be together, and likely to remain together. There would be one journey for parents and increase contact for Debbie, Susan and John/
After nearly 25 years of chronic stress, sorrow and anguish, should these parents not be allowed some peace of mind? All parents who have a child with learning difficulties worry about ‘what will happen when they are no longer able to cope’. These parents have admirably fulfilled their obligations to their children and to society and it is time society offered a belated chance to reconstruct their lives.
It seems ironic that the mother, who has already been offered an opportunity to return to qualified nursing, cannot make this contribution at such a time of shortage. What a travesty of the policy of care in the community if those who are responsible cannot look humanely and compassionately at this family’s story.
Edna Wallace has worked as a psychiatric social worker in adult psychiatry, research and training. She now co-ordinates a social work input to community mental handicap teams and is a lecturer and writer on the subject.
