Video: Living With Severe Learning Disabilities: Jack’s Story (Streaming Well)

Specialised care options

This video presents Jack, a young adult with intellectual disability, epilepsy and other neurological conditions. He lives now in a residential program called Connect 2.

While he was still living at his family home, the family had to provide 24-hour care. Jacks mother describes the strain that this put on the family. They were not really able to go out at all and due to Jack's specific needs and sometimes challenging behaviour it proved to be extremely difficult to find staff who was able to take care of him. As a result, Jack had never left his home before.

The mother also describes the reasons why the family decided to move Jack to a residential programme as an adult. Safety and security for him were very important, but the family is also delighted about the large range of services that the residential facility has to offer.

It was a great challenge for Jack to live together with 9 other service users and a staff team of 40 people. It took him 4 months to develop the necessary trust to come out of his bedroom and the staff allowed him to decide by himself when he was ready to come for the first time to the living room. Since then, Jack has developed in many ways and participates im many group activities. Also regular visits to his family have become much easier and less stressful.

The video makes clear what strain families of people with severe intellectual disabilities can be under and that the lack of experienced support staff can make a continued living with one's family very difficult. Lack of support also clearly limits the developmental possibilities of severely disabled people.

This residential facility has the possibility of providing 24 hour 1 to 1 support, is very well equipped and has apparently highly motivated staff. For Jack's present stage of development it may be a very positive option. However, living together with 9 other service users who also have severe disabilities and challenging behaviour will have its effects on Jack as well. He will grow accustomed to strange noises and behaviours as well as dependent on staff being constantly available. He will lack interaction with non-disabled people of his own age and - after this initial growth - be stalled in his personal development.

While considering all aspects above, Inclusion Europe thus maintains that inclusive living must become an option also for adults with severe intellectual disabilities. Inclusive support services of the shown quality must be available also outside such residential facilities to enable people to live more included in society. Jack's enormous development has shown that he will be able to grow even further than he has achieved until now!

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