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A personal story about a community initiative to provide respite care for profoundly disabled children in Tower Hamlets, London, UK. Tower Hamlets, though a relatively deprived area of London, has a culturally mixed population with over 70 languages currently spoken there.
About 13 years ago I was invited to sit on a committee to help to set up respite care for young people with learning difficulties. As chair of the local junior Gateway club (a youth initiative for disabled children), I was very aware of the need for respite. One of the parents coming to us with her children on a Monday night had six children, one severely disabled. We used to meet her at the door, take all the children from her, put two armchairs together in our quiet room and let her sleep for two hours. It was her only break.
I soon found that I was just a token parent. I was asked to be on the committee just so that it could be said a parent was there. None of my ideas were ever listened to. It did not matter that my son had cerebral palsy and that I was caring for him full-time. After two wasted years I was going to resign when Christine from Barnados (a large children's charity) came to the meeting. She just suggested we have a drink after the meeting.
We virtually started Families Together in my front room. Chris asked me what I was looking for and I said home-based care with another family where my son, Ben, would be cared for the way I did it myself, with love and firmness. Within a month we had formed a steering group with representatives from the health authority, local council, paediatrician, health visitors etc. But this time I was listened to as a parent.
Because my son had no language I had to be extra vigilant. He wouldn't tell me if his pad was changed, if he had a drink when he needed it, or if someone hurt him. It meant that I had to have complete trust in the person who would be caring for him. The only respite at this time was either the children's ward in the local hospital or a home that was not suitable.
Anyway, a year from the day I met Chris, who is our project leader, I took the first child. I went to meet her parents, then met her. We had a few visits and finally with all Tower Hamlets Childrens' Services watching, I took her for her first overnight stay. (Meanwhile other links with the five other new carers were starting.)
Well it didn't work! It wasn't the little girl. She was no harder than Ben, my own son. I had been told that she was difficult. She was an angel. It was the parents. They didn't give me enough medication, (that is one of our strictest rules), and never came at the arranged time to collect her. One Sunday, it was 1.30 in the morning and I refused to let her out of bed at that time. Anyway it didn't work. I was heartbroken. We had a few 'I told you so's'.
My next link was with Annas, a boy with cerebral palsy, who was also blind. I had Annas for 11 years. He became a treasured member of our family. I learnt things I had never done as a nursery nurse: tube feeding, how to suction - and found that I was best with children with health problems and no speech. I've had many different children over the years, some as emergencies, but had Ben, Annas and a foster daughter, Jackie, who is an elective mute. I found Jackie the biggest challenge as although she has mild learning difficulties, she chooses not to talk. We have learnt Makaton together, but some days she chooses not to use it.
Once the group started we needed basic rules: a health and police check for anyone living in the home over 16 years. We only advertised once - we've never had to since. We found that out of 10 people only 2 were suitable and stayed the course. We ran a 6 week crash course of 2 hours a week. People came with pre-conceived ideas and mostly knew about Downs syndrome and wanted a happy little Downs Syndrome child. We taught about epilepsy, feeding, working with parents and a bit about challenging behaviour. 'Challenging behaviour' - that was the fashion that year. The course is much improved now.
We tried to give each family one weekend a month and two weeks holiday a year. This went with the needs of the family, from just a Sunday so mum could attend church, to almost full-time fostering, when families couldn't cope at all.
Families Together grew and grew from two of us, until we now have 1 project leader, 70 carers, 3 administrators, a senior social worker, 4 qualified and 2 non-qualified, one practice teacher, 1 sitting co-ordinator and one person for networking and information.
We were supposed to take five children in the first year. We took 40. In the second year we advertised for Afro-Caribbean carers. We have never had to advertise again. A year later we were the first project in London. 18 children have Asian carers. We try to match our carers to the child's cultural group, but when it is an emergency, or a very sick young person, it has to be the best person for the job.
Without knowing, I found my son's carer myself. I live by our local market and every week I would go in there with different children in their wheelchairs shopping. On a children's stall in the market that I used most, I met a mother and daughter. They kept saying, "I couldn't do that", as I had a boy at the time who was tube fed. Anyway I said come and meet the children when you finish work. They came to Families Together, did the training, met the children and forgot the market! Pam actually has Ben and Jackie today while I'm here. Because of Ben's adaptations, she comes to my house.
We started with one room for the project and it gradually grew. We moved four times. Each time to larger premises. But for the last 3 years we have a purpose built premises that cost £1million. I am proud of the way integration works there. Instead of cooking in different rooms, the Muslim groups cook together with everyone else. When we have workshops, which we have once a month, we break off into language groups for part of the time (72 languages are spoken in Tower Hamlets), but we have the rest of the time together. It's amazing - despite the diversity of our cultural groups, we seem to get good results. We celebrate Christmas and Eid and we all do the cooking together. We really are families together.
Our mandatory workshops are: child protection; race relations; health and safety and sexuality. But there are others on bereavement, Aids, Makaton, First Aid etc. We can choose what we need for the young person we are caring for. At the same time we can also suggest our own ideas. We also have a carers' support group once a month, usually on a topic we want, but we also share ideas with each other.
The best thing is that we have a person at the end of a phone - any hour of the day or night. We always have our support worker's number. The only time I have needed to phone in the night was when a boy I was caring for died during the night. Although I was told it could happen, it was still a shock, and my support worker was with me within 20 minutes. They are there for the highs and lows. And when Ben walked for the first time, she was the first person I rang.
We've come a long way and in the last year we have started a group for autistic young people on Saturdays. This was very hard, the funding was very difficult to find, but Barnados helped again. These young people are over 11 years in age. Most need 1:1, but some need two carers to go out. Most have very challenging behaviour, but the group is going from strength to strength.
In the last six months we have started a sitting service. This is mainly for the very sick children. They don't have learning difficulties, but often are terminally ill. I met a parent last week who had just lost her child, but had come into Families Together to say thank you. She said she would never have coped without us.
It's wonderful to look back to see how FT has grown. I have told you about it from a parent and foster-carer's point of view. Without FT I wouldn't have had wonderful holidays or been able to leave Ben, Jackie and Annas without worrying.
Wendy Jacobs November 11th 1998
This is an edited version of a paper presented at a meeting of the International Child Health Group entitled "Nothing about us without us" in Leeds, UK.
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17/05/1999