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Disability care - families sharing the workload...

Just watched an Australian program on families having to 'give up' their children with disabilities because they were unable to continue to look after them 24/7 (particularly those with other children)...the main issue being access to respite. Had the idea that perhaps the families could share the burden by (with government assistance) purchasing a group home and then sharing the time looking after the kids. So for example, for four families with intellectually disabled children each week two parents from two families care for them on a roster type system. This way each family would still have lots of contact with their child (which they all want) but also have two weeks with unbroken sleep and reduced stress levels. By having the parents from two different families work together for a week they would be able to practically support each other during that time as well as emotional and educational support. Obviously this would need to be thought out such as not having an "adult" male with behavioural problems including violence with a disabled child who was unable to protect themselves. Also it would still require professional support/carers. I wonder what other people think????

  • Oct 18 2013: I have posted some concept of a multistory condominium system in which a group of disabled elderly live in one wing on a floor, with families of unrelated young or middle aged families who would take care of them, with the condo- furnished physical facilities, such as conveyers, automated wheel chair rails and bath facilities for disabled residents. The condo also contains food and laundry services for all families to use if desired. The idea is that the facilities will be shared by all the elderly residents as well as the younger families at the other wing such as the food and laundry services, so that it would be more economical and cost efficient for all the parties involved. In this setup, the younger families could even earn some money by staffing the services within the condo. (Click on my name, you could find 2 such postings related to this topic.)
    It seems to me the same cost efficiency and convenience could be applied here (or coexist with elderly disabled on the other floors of the condo. Here the certain facilities (including certain emergency drugs, respirators, etc.) for disabled children can be shared with all children, say, 12, on the same floor. The disabled children will be slightly separated from their parents, but they can easily be monitored by intercom audio-video monitors piped into all the parenting families on the other wing. So any parent would recognize which of the children are in distress. The observing parent will inform the distressed child's parent first, then other parents, if the former is unavailable, to go with them to take care of the distressed children .For the care-taking families, their other children will also enjoy playground, library, and other educational facilities within the condo. Again this would be cost-efficient because they are shared with all other residents. Of course a pediatrician and a couple of nurses will be available on site or on call, again it also is cost efficient on group caring basis.
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    Oct 17 2013: This conversation is similar to this conversation for adults with disabilities. And in both cases I think a crowd-source-program should be a part of the solution.

    I envision system where parents with kids with disabilities and adults with disabilities sign-up so a crowd of volunteers can help pay bills on time, nanny-cam watch a kid, or Skype so the parent can do some house work, come over to fix something/do yard work/baby-set under the ever watchful eyes of the crowd.

    Would this be a total fix? No. But many people just need a helping hand.
  • Oct 17 2013: Do not know about other places, but there is such a program within parts of the US. It allows families, especially parents time away. They have to make a reservation.
    • Oct 17 2013: Hi Wayne - in Australia it may be changing with the introduction of the "National Disability Insurance Scheme" but at the moment this system is known as 'respite' - generally the disable child stays in supported accommodation for a limited period (eg, 2 days per week, one weekend per month). The issue is though that there are limited places - particularly now that 'relinquished' children are being cared for full time - such that there simply isn't enough support for families with high need children...
      • Oct 17 2013: understood - hope it gets better. The program I know allows up to a 9 days - drop off on Friday and pick up Monday, 9 days later.

        I believe it saved some families and marriages.
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    Oct 17 2013: This sounds like a wonderful idea.......finding families needy enough and willing enough to trust total strangers appears to be, imho, the biggest challenge.
    • Oct 17 2013: Hi Mary - thanks for the response. To address your two issues - firstly there is a huge need in Australia of supported places - families are 'giving up' there children because they are unable to cope with their full time care with the level of assistance that they currently get. As to the trust of strangers - I'm cynical enough to assume that each family will tend to favour their child if two children require aid at the same time - however, by pairing families to support the group they would not only be able to support each other but 'keep an eye' on what was going on. Also I see that the home would still need some gov't aid/support but at a much reduced level if the families were providing the bulk of assistance... Cheers, Vicki