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Old 10-18-2013, 10:57 AM
 
Location: Kansas
19,190 posts, read 13,189,720 times
Reputation: 18058

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So, why don't parents put their adult children with special needs into day services and residential? Well, you know, I used to ask myself that question too until recently. We have a son with Down syndrome who is 27 years old. This is the 2nd service area in KS where we have lived and he was pulled from services both times. The first had immoral and indecent acts happening and everyone just ignored it and the State offices, well, most I think are just sitting waiting for retirement which is pretty good compared to what the rest of us get. The current program, well, my son is developmentally disabled and lower functioning so the easiest thing to do is let him sit of which he got tired of and also, the atmosphere in both the programs he has been in and the ones we just visited, it is terrible. How depressing! The best I figure is that when they "dumped" people from the mental health facilities when they were closed to save the state money, they ended up classified as "MR" since I don't think they had anywhere else to "dump" them. You really can't talk to anyone in the chain of command since they are all pretty much hands off here, contracted out the services. They do what they call a BASIC to decide the level of "pay" a person brings into any particular service and the questions on that are all obviously coming from the institutional days. So, avoid KS like the plague that it is when it comes to services. Always keep in mind that the best place isn't always away from the parents and that the parents probably wish with all of their heart that they could find a safe, clean and pleasant adult living situation for their child. Our retirement plans now include our son. He loves being in an active and lively environment and not among people who look depressed and/or stoned on legal drugs. I couldn't help wonder how many had to be drugged just to be able to stand being in their circumstances. So, don't judge parents. Our son may have a harder transition when/if we die before him but he'll at least have many good years before that happens and he has the resilience to adapt even without being drugged!
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Old 10-18-2013, 11:50 AM
 
43,012 posts, read 86,183,153 times
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I know many of the down syndrome adults living with their parents have jobs during the day. They take public transportation together. I believe they make brooms. They seem so happy on the bus. There has to be something in your region similar to this. If there isn't, get together with some other parents and establish a nonprofit to promote health alternatives where you live.
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Old 10-18-2013, 12:52 PM
 
Location: Middle America
34,677 posts, read 37,088,086 times
Reputation: 46077
Remember, though, that there are lots of different types of ISLs/group homes, etc. I don't have as much experience with dayhab, but I do know from personal experience that there is a whole range of ISL options that range from sucky to wonderful.
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Old 10-19-2013, 06:19 PM
 
Location: Kansas
19,190 posts, read 13,189,720 times
Reputation: 18058
Thank you for your responses. This is our 2nd CDDO, contracted out services for people with DD. I have seen what they have to offer. We considered becoming licensed ourselves but we are getting very close to retirement age now and energy wise between the consumers and the keeping up all the regulations and requirements, it isn't practical at this time. Plus, SO many of the consumers here (people with DD) are older than us with many having came out of institutional placements and having no one other than detached guardians. I was actually shocked that I have yet to meet anyone in the system that actually has knowledge of what developmental disabilities entail. They do no psychological testing. It is a more "keep them off the street", manage them Our son functions intellectually at about the kindergarten level. We have accepted that no program here under the CDDO system will ever adequately meet his needs. Things may change in time since at some point, they should have a younger population with parents/guardians actually interested in what is being done. Another issue is the dual-diagnosis whereby they are moving adults from the mental health facility to the community and if they are considered developmentally delayed and mentally ill, they go to the same facility as my son. He is happy at home and actually has more activities he can do here. Since he doesn't communicate very well, he doesn't enjoy the company of others that much and he is very mature socially and well-behaved so pranksters just get on his nerves. We'll be moving around some time looking at what is available. My home state of MI sounded promising. KS is SO backward and change is dirty word here. We'll get it!
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Old 10-19-2013, 07:38 PM
 
12,669 posts, read 18,921,693 times
Reputation: 32430
If these costs are any indication of what the parents of disabled adults have to deal with, I can completely understand how day costs can be out of the reach of many:

Tenafly parents count on Pennsylvania facility for disabled teen : page all - NorthJersey.com
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