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When apparent my mama needed more hours than part-time Home Aides, our social worker set up the spend-down, Disability Pooled Trust and Managed Long Term Care (MLTC) via Guild Net, which I thought was a wonderful company for the past four years or so. Even as we had to change the agencies that provide the ladies four times, Guild Net's Nurse Case Managers would always intercede on Mama's behalf to find better ones when we ran into the inevitable laziness or other problems associated with strangers living in the house with mother. Then, in the past eighteen months, came rumblings of some entity "not paying overtime" to maintain the minimum amount of Aides in the house, which led to a dangling day on which any number of ladies would arrive, without the same commitment as the other two who covered the six weekdays. A "revolving door" model ensued and we complained about it.


About this time, in the middle of last summer, Guild Net in New York announced they would not offer the MLTC as I understand it anymore and people had only ninety days to find another model. In response to reaching out to the hierarchy of Guild Net, they suggested we try the Nursing Home Transition And Diversion Medicaid Waiver ("NHTD") program, even though mama is still in the house she's lived in for fifty-eight years and never left the "community" (she is now ninety-four years of age, btw). They offered to help apply and then deadlines came into play as I guess there are certain periods of the month when changes can be made - ours became December 1, 2018. We chose a "provider" from an extensive list (name provided upon request); suffice it to say, when December 1 arrived, they were not ready to assume the "com" oif mama's Starship. This format gave us two twelve (12)-hour shifts instead of a live in!! With one of mama's favorite Aides, who transitioned with us into this NHTD, having to leave after dark in all kinds of weather, which causes mama with dementia even more stress, let alone trying to remember all of these "third world" names these days! We are college-educated Black Americans and Mama is from North Carolina originally and a former Educator yet this problem, like many in our lives, transcends ethnicity - we are all human beings.


This place, "Maximus" is a bureaucratic "big brother" nightmare who seems to want to find reasons NOT to fix this situation rather than kindness and help. Even my current Geriatric Care Manager (she is part time) seems unsure as to how to navigate these troubled waters.


Are there any out there who are skilled in advising me/us on how to proceed with the minimum of goal post moving by Albany? Feeling like writing a protest/complaint letter to Governor Cuomo, I do not reside in NY, by the way, but visit often to check on things. It is increasingly frustrating to me, the Health Proxy and POA. No sibling help (my "T.S."would only add to the misery, lol)


Questions? Thank you in advance.

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I am sorry this happened. Are there other families you know in this same predictament? I know there is strength in numbers. Maybe the CG (the ones there the longest) can be your feelers so to speak to see if other families are also badly effected & that you can get a group together?
Barb from Brooklyn is well versed in New York geriatric issues...maybe she can provide guidance if she sees this topic.
I am away that due to budget cuts and the amount of tax revenue New York is losing from people leaving the state is a huge issue but IMO providing programs like this for your mother is still more cost effective than nursing home costs.
I hope it works out for you and your family so your mom can get the care she needs.
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GuvnaBee Jan 4, 2019
Now, I am seeking a new Geriatric Care Manager who is cost-effective, yet aggressively skilled in handling this matter. Does anybody know of one? I just found this site https://www.nyalca.org/ Time is of the essence to get my Mum out of this mess and back into the MLTC model of 24/7 live in which we enjoyed for the past four years or so.
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Yeah, maybe after Holidays. It is a real nightmare that I am sure other families are experiencing. Governor Cuomo needs to know. Paper letter writing campaign will start. Thanks for your reply. Merry Christmas and Happy New Year 2019!
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Hopefully, a member is from NY State.
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