Josh/2010/group home/why

Written 2009-05-21

Josh's case manager needed a written justification for the foster home into which we are currently planning to move Josh on or around June 11. The justification applies equally to a group home, though there are some additional reasons why a group home is (more) appropriate.

Main reasons Josh needs to live elsewhere

• Josh decided many years ago that the living room was his bedroom; realistically, there isn't any alternative in our house. Josh really needs to have a separate room...
  • ...with very few things in it, so that there is a reasonable chance of finding lost items – he frequently loses things and has not yet worked out a way to indicate what is missing. (Our living room is where most of the kids' toys are kept and is generally cluttered.)
  • ...so he can get away from noise and activity in order to calm down
  • ...so he can be be kept from the other kids when he is in a bad mood
  • ...so he can turn off all the lights and sleep when he is ready to go to bed but adults are still awake.
• The presence of much smaller, younger kids (his brothers) provides an easy target for him when he is in a bad mood.
• Josh needs to be cared for by people who have the training to properly handle him when he is being difficult, to analyze his cognitive needs, and to identify and obtain the proper therapies to help him.
• We do not have the resources to keep him busy and mentally engaged when he is not at school; keeping him engaged is necessary in order for his behavior to be manageable.
• We have great difficulty with setting firm boundaries and keeping to a regular schedule, both of which are very important for managing autism in general and Josh in particular. (Here is a good example of a schedule that makes Josh very happy.)
• Josh's presence is a source of great stress for everyone else in the household, including his younger brothers.
• Josh's daily needs make it unrealistic for either of us to seek steady employment, and greatly reduces the number of hours we are available for other paid work; this threatens the financial stability and health of our family.

notes

The document as sent also included behavior notes and the "Inabilities" section from Josh facts.

Written 2008-04-18

The circumstances have changed slightly, so this is a bit outdated, but it reflects our thinking at a time when we had finally come around to deciding that a group home was appropriate for Josh in the short term rather than waiting until he finished high school.

why away from home?

• We can't reliably prevent him from running away and possibly getting into serious danger. Even so, we have to keep the house tightly locked down when he is here, which is unpleasant and interferes with our activities. We aren't equipped to run a minimum-security prison.
• Josh's bedroom is also the TV room because there isn't any other place to put either of those two things; this frequently causes problems in the evenings when we want to watch shows which aren't suitable for the younger kids, but Josh wants to go to bed. This is one of the major causes of his evening tantrums, which often lead to sleep-deprivation for the grownups (especially Sandy and me).
• There are conflicts over space (he seems to need a lot of it, and doesn't like certain activities going on in "his" space).
• The younger kids feel very threatened by him (and resent having their books and other small items randomly destroyed by Josh).
• We don't have the energy, focus, or training to deal properly with his needs. We already have difficulty organizing our own lives; throwing Josh into the mix makes things even more chaotic, and Josh is someone who needs order and regularity.
• Josh's presence makes it difficult for me to keep up with paying work (I do independent computer consulting); I have had to neglect my existing clients and avoid taking on new work. (It also makes getting a regular job pretty much out of the question, unless I were to find an unusually tolerant employer.) This is causing cashflow problems, to say the least.

Josh's brothers (Benjamin and Zander) need their home to be free of the randomly (though not maliciously) destructive presence of an older brother who, though physically adult-size, cannot dependably be communicated with and does not respect others' property. They need to be able to leave a favorite book on a table without worrying that Josh will see a small tear in one page and feel compelled to tug at it (and then the next, and the next), until the entire book is in shreds. They need to be able to be at home without worrying that Josh will suddenly get in a bad mood and start hitting them.

We, the adults in the house (Sandy, Nick, and Sandy's eldest son Mel), need to be free of having to monitor Josh constantly throughout the day whenever he is home -- to keep his juice cup filled, to make sure he isn't hurting someone, to make sure he isn't carelessly destroying something, to make sure he isn't escaping. We need to not have to worry that any yelling or loud/unusual sounds -- or even unusual quiet -- aren't the signs of a potential Josh-disaster.

why a group home?

Josh needs an environment which is less chaotic -- more predictable and less crowded -- than his current home. He needs to be in the care of people who have training in dealing with the daily-life issues which are involved when caring for someone with autism, and who have the energy and focus to apply that training appropriately for Josh's needs.

what sort of group home?

A quality group home in a non-urban setting with a small number of residents per unit would be best for Josh; he does best when he has enough space and not too many people around him. He might do especially well in a farm setting, where simple tasks requiring physical strength may be something which he would enjoy being involved with. (He might also do fine in an urban setting, but he would need to be watched carefully for signs of being disturbed by crowding, city noises, or claustrophobia. Either way, keeping him busy with mentally- and physically-engaging activities is crucial.)

what we've done so far

We are currently seeking a group home for Josh. We have applied to the following:

• (January 2010) Residential Services Inc got back to us within a week and essentially decided that he needed a higher level of care than they could provide
• (2008) the therapeutic respite program at the Murdoch Center in Butner -- turned down completely
• (2007-12-27) Gaitway, a small group home operated by ASNC in Carrboro
  • my extended answers for that application are here
• (September 2007) GHA in Albemarle, NC: he is on their waiting list, but they cannot give us any idea of how long it will be before a slot opens up