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Old 11-30-2010, 11:09 PM   #1
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Question DS, Ostomy and Transition to Adulthood

My son is 21. He has Down syndrome and an ileostomy. In June he will be graduating from high school. His future is filled with opportunities for jobs and community activities. He needs to learn how to change and patch his wafer, so he can pursue these. I would like a professional or paraprofessional to teach him how to manage his ostomy. The training should be provided by a male, in a variety of environments so that he learns to deal with his ostomy in many environments.

Do you know of any organizations or message boards I should contact to find some help? How do parents prepare their student with cognitive delays and ostomies for adulthood?

If you know of any training materials on how to manage the ostomy that is geared toward people with cognitive delays, would you please share them?

Have you had success receiving support for ostomy care through Medicaid Waiver Programs? If so, how did you make this happen?

Thank you for all your ideas.

 
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Old 12-01-2010, 03:03 PM   #2
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Re: DS, Ostomy and Transition to Adulthood

The public health department may have ideas.

 
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Old 12-03-2010, 07:17 PM   #3
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Re: DS, Ostomy and Transition to Adulthood

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Originally Posted by pupcake View Post
The public health department may have ideas.
Thank you for this suggestion. I have emailed the County Clinic for ideas.

Please keep ideas coming.

 
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Old 12-04-2010, 06:50 PM   #4
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Re: DS, Ostomy and Transition to Adulthood

Does he work with any Supported Community Living agency/group? They can help him get an apartment, job, live on his own (with support) In our area we have workers that come into the home 4 x day to help clients take meds, check blood sugars, shop etc.

Pup

SCL could help with the ostomy or make sure there is home care to assist/teach

Last edited by pupcake; 12-04-2010 at 06:51 PM.

 
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Old 12-06-2010, 11:09 AM   #5
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Re: DS, Ostomy and Transition to Adulthood

Quote:
Originally Posted by pupcake View Post
Does he work with any Supported Community Living agency/group? They can help him get an apartment, job, live on his own (with support) In our area we have workers that come into the home 4 x day to help clients take meds, check blood sugars, shop etc.

Pup

SCL could help with the ostomy or make sure there is home care to assist/teach
Thank you for your suggestion. Yes, I am working with his case manager in the Medicaid Waiver Program. She is looking into what funding and resources are available. Apparently this type of request hasn't been made before.

 
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Old 02-08-2011, 01:01 AM   #6
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Re: DS, Ostomy and Transition to Adulthood

I'm back with an update.

I have received no help from any of the agencies. I created a job posting and contacted a local college that has a nursing program. They posted the position. I've received no replies.

So, I'm going to work with my son to see if I can teach him to change his appliance (wafer).

If anyone has taught their child, please send suggestions. There is a great video on Youtube that shows someone doing this, so that's a start.

(I just wonder how adults with DS and an ostomy lead somewhat independent lives.)

 
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Old 02-08-2011, 05:21 PM   #7
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Re: DS, Ostomy and Transition to Adulthood

WOW, it shouldn't be that hard.

Where is he going to be living? Is he going to have an agency working with him, to help with medications. shopping, etc? In my area a home care nursing agency would bill medicaid (his reg medical not waiver) and teach the community living agency how to do the cares.

He can learn how but he would need to have backup if he got frustrated.

I'll keep thinking

Pup

 
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