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She is in Orange County, CA and is approved for Medicaid and also has Medicare (United Healthcare HMO). I am trying to be prepared for more decline, but need more info about Assisted Living Waivers. I want to get her on waiting list which could take "9-12 months" I've been told. But how do I start the process??? and is a waiver what I need for her. She is currently on the Independent side of AL and her SS doesn't cover the expense, of which I supplement. I want to sit down and discuss this (I am her POA) with the correct agency/dept. Help!!!!

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Is there a social worker at the facility where your sister lives? If so , contact them as soon as possible.The level of dementia you have described may mean that even assisted living would not meet her care needs.Contact her insurance provider and ask to have a case manager assigned to your sister, they can be very helpful but you have to be proactive. My journey with my mom has been made easier by having a good working relationship with her case manager at her insurance provider. Keep a notebook for phone numbers, conversations you have had. Get your sister's primary care MD involved, remember "squeaky wheel gets the grease" be assertive ,not aggressive there is a big difference.
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Compassionate5, I would contact your State Medicaid office to see if the State offers Waivers, not every State does. From what I understand, your sister will pay what she can and then the State will make up the difference for Assisted Living/Memory Care.

You will also need to see if the Assisted Living/Memory Care will continue to have your sister be a resident. Some places require that the resident be able to do certain things on their own. And check to see if the Assisted Living will take a Medicaid Waiver, if such a waiver is available for your sister.

Another option is a nursing home/memory care to which Medicaid pays the full about for housing and care.
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TBT and FF- great advice and I appreciate all of it. I actually "spoke" with Office on Aging
and was given a number to call (their # to call) which isn't/wasn't posted anywhere.
Voila!! I was told someone would call me "right back" and when that didn't happen in 2 hrs. I called again. I struck gold!! I gave her Medicaid #, answered a few questions, and was assured she is now on waiting list to apply for waiver. "Probably won't be before July '18." There is a certain amount of luck associated with this journey and my sister with dementia is clueless about this successful struggle. But my peace of mind is epic!
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