My MIL has advanced dementia cognitively, but in terms of physical functionality she is able to complete tasks with prompting and queueing. She is exit seeking, and definitely a wander risk.
I understand Medicaid generally does not pay for home care but strictly speaking her neurologist does not feel it is safe for her to be alone. She wrote a letter of stating how care was medically necessary. Her MLTC still denied the increase.
I do know if anyone here has experience navigating the system but when it comes to placement we are having a hard time even getting in the door because her PRI which is what we were told needed to be done to get her placed using Medicaid states that she requires a one to one for safety and supervision. Unfortunately that one thing has got her rejected.
We were informed only way to bypass that is to take her to the hospital and do what they call and ER dump and site it is not a safe discharge. Issue is my husband is his mother's legal guardian through an article 81 guardianship so she is technically a ward of the state but my husband oversees and is responsible for her person and property the latter of which she has none of.
Placement has to be approved by the courts and while he can get out of the guardianship he will be unable to advocate for his mother if he is removed from the order.
So how do we navigate finding a placement via Medicaid that will accept her PRI without essentially forcing them to take her by making a motion to be removed as the guardian and doing the ER Dump letting her be solely managed by the state?
We spoke with many lawyers and social workers and they have all told us the same thing you won't like where the state will place her and even then it could take a long time to get removed since it is a process.
We are both at our breaking point but my husband is scared of being removed off the order. His mother has no else but she cannot keep living with us and we cannot afford to have her live on her own with support.
It is more realistic to put in an order that staff gets her up, helps dress her, moves her to the tv room and checks her depends every two hours. Twice a week, they bathe her.
That is also a concern her neurologist has if she becomes lax with the 1:1 language the staff will become lax with her patient.
Such as put in her depends instead of making sure she wipes probably whenever she uses the bathroom and stuff.
Overall we are not against the idea of placement. My husband just wants to make sure he retains his ability to advocate and make does on the behalf of his mother. That is the only reason he has not dropped being her guardian.
We also understand that assessment is akin to a contract if they agree to take her with her assessment theh agree to those terms.
Your MIL needs to be in MC, and preferably close to you. If your husband gives up his portion of the guardianship he and family can still visit her often in order to check on her and advocate for her.
I don't understand her needing 1:1 care. There is no facility that I'm familiar with where MC residents get 1:1 staffing. I have a good friend now in a very nice MC and even there it is not 1:1. I'm hoping other responders will have more insights for you.
They explained the 1:1 is required because her issues cannot be scheduled. The article 81 guardianship was brought forth by APS and department of mental health and hygiene. My husband's was only offered two choices become guardian or let the state place. He was against it and took guardianship.
Unfortunately that choice is has kneecapped him and is strangling us. As guardian with state oversight he has to adhere to their plan of care. He is free to make a motion to get out of it but they made it clear he would have no say in any aspect of plan of care towards his mother. My husband does not like that, but more or less he was told you cannot just agree to be a guardian then want out when it gets too hard and expect some level of control.
Now his lawyer said if we can find a place that we approve of to accept her we can make a motion to have her placed. If we pick a subpar location the judge will deny the request if my husband still has guardianship.
Would some ‘good experiences’ resolve some of his worries, and help to resolve this?
According to his attorney and various social workers. The court appointed community guardian is under no legal obligation to take family wishes or concerns into account. Questions regarding treatment, and plan of care do not have to be answered. In the matter of visitation can be revoked under the pretense that it is the wards best interest. They even cited cases where community guardians did limit visitation of a parent in facility care due to it causing distress for the one placed.
It appears it is a coin flip on how the working relationship is with the community guardian. Some are decent some are not. As we were told they are only human after all. We were also told it is not uncommon to run into situations where they become rather hostile towards families that fight for guardianship then later ask to be removed because it becomes too hard.
I doubt good experiences will sway his mind cause it is not a one size fits all situation. Some will have positive, some will have neutral, and others will have negative experiences no one can say for certain which one my husband would have.
That is why we are trying to get tips on how to find placement that will understand our situation. If we can find a place that will take her even if it is not the absolute best he can still be a proper advocate for her and not let her fall in the cracks.
I gave an example such as revoking or limiting visitation of a loved one under the guise of distress which is something his attorney has had experience happen even when no abuse could be proved or found. They just revoked the visitation simply because the ward or IP could no longer handle family visits without it have an overall negative impact on their current situation. Which has lead to further issues down the line since visitation is sometimes the only thing that holds people accountable.
The scope of what could happen is limitless. As he was told it can be a coin flip how it goes. They are humans far from perfect as humans they have good days, and bad days. They have people they like and don't like. If we are being fair is it really unreasonable to not want to leave such a thing to chance? Sure a lot of stuff cannot be controlled with this diease but somethings we can control.
Even in his situation one can see a clear bias. The courts are being overly strict with my husband but we all know if she was a appointed a community guardian they would not have to go through so many hoops to get her placed. With one phone call that 1:1 language would be removed from her assessment. They would not have to wait months for their motion to even be heard to get her placed. They would not be questioned on why he is failing his duty providing her a safe discharge. They would simply be able to get away with it is no longer safe for her to be home.
That is what my husband is afraid of, given how they have acted towards his concerns about us being burnt out I don't blame him.
If someone comes to you saying you are burnt out and your answer is well you can always quit but just know you will lose all authority to advocate and be a voice for your own mother that had the misfortune of getting this horrible disease.
Thus my name people make it seem like this often boils down to choices but those choices excuse my language are often f****d. In my husband's case even more f****d because he wants to still play an active role in his mother's care.
Why should be be punished because his mother and father did not properly setup a lasting POA? All he is doing is trying his best.
Thus why I came here at suggestion of a friend to.see how getting tips on how to find good medicaid facility place that will work with us in our situation.