Jonathan's Story : An institution? Yes or no? by Wendy G |
Had we inadvertently stumbled across the perfect environment for our ex-foster son, who had extremely complex disabilities? Was this to be his "forever home"? The disability service suggested to us sounded promising. It seemed that Jonathan would be looked after by caring and experienced staff – and there was an enriching Day Program …. It seemed to be what we were looking for. Apparently, however, this service was considered by the government to be an “institution”. It was not a Group Home because there were about a dozen clients, housed together - although only two or three to each bedroom. However, a single room had recently been made available, and it could be Jonathan's if we wished. The staff were excellent, according to all reports – and nothing else was available. This place too was nearly an hour’s drive from us, and more than two hours from Sheryl’s home. An institution? How would Jonathan cope when he was used to a family? We’d been promised a Group Home, with house parents. I had many misgivings – but we decided that Sheryl and I would take Jonathan there to check it out. To a large extent, we wanted to see Jonathan’s own reaction – he was extraordinarily intuitive and would make his feelings clear. We arrived late on a Saturday morning – and were warmly welcomed by cheerful staff. We were ushered firstly into the beautiful gardens – to join a birthday party for one of the clients. There were established trees for shade, flowering shrubs, wind-chimes, pleasing seating areas, and clusters of balloons and other decorations for the special birthday girl. Appropriate teenage music was playing. There was an air of happiness and excitement. Jonathan was obviously delighted. He loved parties and was very sociable – he fitted right in and was offered party food, presented in a way he could manage. Later the staff suggested we go indoors. Apart from the bedrooms and kitchen area, where a professional cook was employed to provide nutritious food, there were lounge rooms, craft rooms, activity rooms, and physical therapy rooms. The buildings were extensive, and the view over the gardens from most of the rooms was attractive. A very well organised day program with a variety of activities, including music, craft, learning improved communication skills with developing technology, cooking, and a host of other things was provided by this centre. The clients were divided into small groups for this, so they could get to know each other better, and staff could focus on their individual needs with consistency. If he came to live here, Jonathan’s Individual Education Plan would be brought from his school and adapted to the environment and learning programs here. Jonathan at first did not want to go inside – he wanted to stay where the fun was happening. However, once inside, he relaxed. They showed him the Sensory Room where changes of position could include being comfortably stretched out on a long beanbag or sitting in a massage recliner, or having a foot-spa while watching lights of changing colours and patterns light up various corners. There were lava lamps, and a huge fish-tank with slowly swimming fish. Fresh flowers from the garden catered for the sense of smell. If there were no flowers, they used lightly scented candles. Some of these activities were designed for physical relaxation and loosening of tense, tight limbs, others for teaching the vision-impaired ones to track lights, and yet others simply for emotional well-being. This was a place for soft music, for quietness. The clients were allocated turns, so that it was never busy or loud. We were impressed. Jonathan was happy. Predictably, he did not want to leave the Sensory Room. Sheryl and I sensed that he would be happy here – we would accept the offer of a placement. The institution had an open-door policy. We could visit whenever we wished, and yes, we could take him for outings, or bring him back home for weekends. Wasn’t that exactly what we had hoped for? However, more information was still being offered. We listened carefully. ********** The Government of the day had apparently declared that the accommodation wing of this service would be closed down within a year or two. All such institutions would be closed, permanently. Disabled people needed to be treated with dignity and they should be visible members of their local community. We could not disagree with that. They would therefore be devolving into Group Homes, but the Day Program would continue; all clients would be taken by bus to the Centre for their personal program each day. The plan was for all clients to be housed in freshly renovated ordinary homes, adapted for wheelchairs and provided with hoists, with a maximum of four clients in each. There would be a family atmosphere, and each home would have House Parents, just like a real family. My time as a foster parent was now drawing to a close, but in a more satisfactory way. Sheryl asked me to still be the “person responsible” involved with decision-making and completing forms and paperwork. She and I would remain in regular contact, both with each other and with Jonathan. It sounded good. ********* I filled in reams of paperwork – he would have his own folder kept up to date with his information accessible to all staff. He was leaving his school and friends behind but would have the opportunity to be farewelled appropriately. He was still entitled to his certificate of completion of their program for him. His Individual Education Program from school would be transferred and in the near future it would be incorporated into the new adult Day Program the disability service would prepare for him, once they were more familiar with his interests. General health, specific needs for his conditions, medications, names and contact details of specialists, and of course his dietary requirements … all these were duly noted. I wrote that he disliked eggs and oranges – but ate everything else with much pleasure, including a variety of international cuisines. He enjoyed trying new and different foods – both taste and texture were important to him. I explained how to feed him with textures he could manage, and how to assist with lip closure. What I said aligned well with the procedures they already followed. A dietician was on staff, as well as a speech therapist who advised about eating skills and best practice; there was also an occupational therapist who looked after postural support for chairs and wheelchairs and advised on movement and exercises. Hydrotherapy was offered, and I completed all the necessary permissions. Everything had been thought of. It seemed that I could now relax, knowing that with all this expertise, Jonathan would have many rich and varied experiences for this next step in his life. He was now an adult. Was my work over? ********** The move took place. We continued to see much of Jonathan, and he appeared settled. He adjusted well, was quickly accepted, and seemed to be happy with his new life. Why then did I have this inexplicable sense of foreboding?
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