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I am reaching out with an urgent plea for assistance regarding my father’s care. He suffered a stroke & is currently residing in a skilled nursing facility. Unfortunately, we are facing significant challenges that directly impact his well-being.



Despite our repeated requests, the SNF has failed to address my father's malnutrition adequately. Administrative errors incorrectly diagnosed him with major depressive disorder, attributing his weight loss to antidepressant denial. Despite our attempts to rectify this, the facility insists on maintaining the error. As a result, he now experiences muscle wasting on his unaffected side, drooling due to dysarthria & the denial of speech therapy, leading to a noticeable decline in muscle mobility & a raspy voice.



My father urgently requires neurorehabilitation for functional recovery, yet the facility insists on custodial care, denying him specialized & essential therapy. Despite the fact that he does not have a diagnosis of major depressive disorder, the facility claims noncompliance with antidepressants, overlooking his prior active participation in therapy sessions. This misinformation further complicates matters, as it influences the facility's refusal to assist with his 4.5-hour roundtrip therapy at Stanford, essential due to hemiplegia & bowel & bladder care requirements. As he attends outpatient physical therapy twice a week (falling significantly short of the recommended 5 days of high-intensity therapy for functional improvement), he must refrain from eating&drinking the night before to prevent soiling himself, particularly challenging as he is alone on the trip & we have not received the necessary education. Despite consistent recommendations from neurologists at both UCSF & Stanford to transfer him to an inpatient rehabilitation center, the process is hindered by inaccurate records & the persistent misconception about antidepressant noncompliance.



The denial of occupational therapy has halted the emerging movement in my father's right shoulder & fingers. After just one week of therapy, focusing on basic tasks like rolling over in bed & scooting, it was abruptly discontinued. Now, the facility blames him for his inability to use the bathroom, alleging he is incontinent by choice & refuses to participate in his own activities of daily living. However, the reality is that he lacks the necessary education & support to perform ADLs with one hand, leading to frustration & dependency. Despite purchasing equipment like a mirror & a tens unit, which he responds to positively, the facility refuses to provide the necessary training. Recently, he has shown slight improvement, being able to lift his right arm for short periods, but without proper guidance, progress remains limited.



He also grapples with bilateral knee osteoarthritis. Unfortunately, the specialized equipment crucial for his rehabilitation is solely accessible in inpatient rehab centers. Although he was scheduled for full knee replacements when he had the stroke, they've been postponed until he can balance and walk again.



Over the past 1.5 years I've tirelessly advocated for his proper care & placement in a facility equipped with essential medical resources. However, inaccuracies in his records have hindered his acceptance into any inpatient facility. Despite recent intervention by the Dept. of Managed Health Care, overturning Alameda Alliance's denial for an inpatient transfer, our options remain limited.



Desperately seeking guidance as we aim to bring my father home but lacking the necessary resources/support. Insights from those with similar experiences or helpful organizations are greatly appreciated.



My father deserves compassionate care, accurate documentation, & the opportunity to regain his quality of life. At 61, he's been a pillar of support for our family, managing the needs of members with developmental disabilities & providing care for my mother, who faces mental health diagnoses & cancer.

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I have not responded earlier because you received some good responses but it was Geaton's response that got me thinking. Your problem may not be the Rehab your Dad is in but his Insurance Company. Does he receive Social Security Disability? If so, he receives Medicare. Medicare sets the stage for what Rehab can do. If not on Medicare but regular Medical insurance or even Medicaid for health insurance, the insurances tell Rehab what they will and will not pay for. If the insurances won't pay, then Rehab will not perform the service. So your fight is not with the Rehab but with the insurances paying for the therapy.

Do you expect his present Rehab to transport Dad 4.5 hour round trip to Stanford for care? Yes, they maybe able to set it up but, insurance may not pay for it so Rehab won't either. Actually, most insurances will not pay for non-emergency transportation. Thats out of pocket. I think you would be told to move him closer to where he needs care.

Again, your problem is not so much with Rehab but with the insurance companies.
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Igloocar Mar 14, 2024
JoAnn, your thoughtful response has led me to mention one more point. Dreamari86, please listen to JoAnn! Dreamari86. You've been concerned that your father's knee osteoarthritis hasn't been treated in this facility. However, he is not in the care facility for knee osteoarthritis. He was being treated for it before his stroke, I assume with outpatient physical therapy. If he is to have more physical therapy for that condition now, his doctor will need to prescribe it and his insurance will need to pay for it unless he wants to pay out-of-pocket.

However, your father is a long way from being in a condition in which knee replacement is appropriate, and the chances that PT will be prescribed and paid for are probably not good right now. Dreammari, when I was preparing for unilateral knee replacement when I was close to your father's age, I did about 1 hour of PT 7 days/week at home; I saw a PT 1 or 2x/week. That was plenty--and I was having only 1 knee replaced! I could not possibly have managed this in addition to the therapy needed for another major, critical health issue. Even if the facility is not offering as much therapy as you want, he still must have exercises to do in his room! If he has his computer in his room, Stanford probably gives him a password to access videos of his exercises, which can be of great help.

Dreamari86, I realize your request was for a recommendation as to what type of lawyer you should be hiring. Like some others here, I have concerns that hiring a lawyer will not solve your problems, some of which seem to me to arise from your and your father's needing a better understanding of what's realistic for his stroke rehab at this time and what's realistic to expect Medicaid to cover now. It cannot be good for either of you to be pushing forward in the way you've been doing, and I feel for you (or I wouldn't be writing so much!). Your father can have a good quality of life without the probably unrealistic amount of further stroke recovery that you expect. It sounds as if many of his faculties are intact, and he can use those to make a better life for himself! Please consider making this your focus instead of pursuing legal actions that may lead nowhere and that can cost your family a lot both financially and emotionally.
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It is difficult to follow your description. As I understand, he is in a Medicaid bed at a SNF. That is the custodial care part. Did this follow rehab? Medicare pays for therapy but after those 21 days or so, insurance will cut back on the custodial care. Some additional therapy can be ordered by a doctor if some progress is expected, but usually a full recovery is not expected. If you expect transportation to some top if the line therapy outside of the facility then you are dreaming that it is feasible. It is not. Non emergent transportation is not covered by insurance. If you want him to go then someone needs to pay out of pocket.
The feeding part is separate. Is he actually complaining that he is hungary? Facilities can offer food but it depends if the resident wants to eat or is he eating a few bites then refusing.
Rather than a lawyer, you might want to hire a patient care advocate who is familiar of better facilities and maybe offer explanations to your complaints if a solution is feasible or if you are just grasping at services that are not covered. That person can help educate you or help you explore if you can move him to another Medicaid facility, or if you want to take him to your home. He had a life changing stroke 1.5 years ago according to your description which means a lot of time has passed. His body may be shutting down. You need to explore this also with the advocate.
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dreamari86 Mar 11, 2024
After the stroke, my father's admission to an inpatient rehabilitation facility posed significant challenges due to language barriers. Staff primarily communicated in Spanish, whereas my father only speaks English, compounded by dysarthria that hindered his ability to speak. Despite my daily efforts to explain the language barrier, they declined to transfer him elsewhere and restricted visitation due to Covid-19 protocols. Only after urgently needing to inform him about his mother's funeral did they permit my visit, but by then, his time at the facility was nearly over. During the visit, I emphasized his English-only communication needs on his room's board and name tag. This adjustment led to better comprehension of therapy instructions, showcasing improvement, particularly in his right hemiplegic arm. However, the facility claimed his lack of understanding was due to the stroke and insisted on transferring him to a SNF. Despite my repeated explanations that UCSF Hospital affirmed his cognitive abilities except for Spanish, the miscommunication persisted.

Upon transitioning to the SNF, his speech started to improve after a day of collaboration with the speech therapist & he was able to talk. He explained he was having trouble swallowing at the inpatient, which was why he kept refusing to try the solid food they were trying to give him. However, inaccuracies persisted in his records, including incorrect diagnoses like hemiplegia on his left non-dominant side, diabetes, & major depressive disorder. My repeated requests for corrections went unanswered. Occupational therapy was suddenly discontinued without notice, and I only learned about it weeks later when he was disenrolled from the managed care plan. Their struggle to request therapy from fee-for-service Medi-Cal persisted for six months, coincidentally aligning with the managed care plan's resumption of coverage. However, therapy was abruptly halted again after a week following my complaint to the Department of Public Health.

The SNF's therapy sessions were inadequate, neglecting his affected side and focusing on activities he could already perform. Despite Stanford's recommendation for higher therapy levels and the Department of Managed Health Care overturning the denial for an inpatient transfer, the SNF resisted, falsely accusing my father of noncompliance. This refusal persisted despite DMHC deeming the transfer medically necessary, emphasizing the need for a Zero G walking harness only available at inpatient rehab. The SNF falsely attributed my father's decline and weight loss to medication noncompliance, specifically refusing Remeron (antidepressants). However, they continued to withhold appropriate food portions, causing malnourishment and dehydration. My father refrains from eating before appointments to avoid accidents during physical therapy sessions. Stanford will address his toileting needs, but he still requires assistance with balancing, walking, and pivoting, unfulfilled by the SNF.

As my father's participation in a stem cell trial approaches, the urgent need for neurorehabilitation therapy becomes evident. However, the SNF's refusal to provide adequate care & falsifying records hampers his progress, leaving us struggling to secure the necessary inpatient transfer. Despite recent developments, the SNF's retaliatory actions persist, obstructing his path to recovery. Their refusal to adjust the care plan to address his medical concerns, such as bilateral knee osteoarthritis, & their insistence on retaining the inaccurate major depressive disorder diagnosis further complicate the situation, hindering his prospects for inpatient rehab participation. They are writing the insurance that he has improved there because he can now move his left arm, but he could always move that arm, his stroke affected his right side. In order to have the knee surgery he must be able to walk & balance, currently working on, but at slow rate since he only goes 2x a week for 40 min.
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I don't like to be the voice of gloom, but did you write somewhere that the stroke was about a year and a half ago? If so, at this point, according to most literature, most of the significant improvement expected after a stroke will have occurred. In addition, there a Medicare limits on the conditions under which Medicare covers continuing rehab. There's a strong possibility that some of the therapy he appears to need would no longer be of benefit. Or the life skills approach may need to change. For example, learning to do more things with the "good" arm may be more helpful and realistic than trying to strengthen the other arm.

Is there any way you could have one consistent outside full evaluation of him and his realistic potential? I know you want the best for your father, as you should, but this sounds like an extremely stressful situation for all concerned!
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This may be off track, but what is the stem cell trial for, and is it related to his current condition? Also, as someone who has had a knee replacement, I would suggest not thinking about it at this point. To recover well from knee replacement, you need to have better-than-average strength and mobility in your legs going in. The post-replacement therapy is very demanding. After all the therapy he will have gone through before that time, expecting him to do still more long-term therapy could be unrealistic. Also, if his amount of walking is going to be reduced long-term, the need for knee replacement may be less. Finally, better options to total knee replacement keep being developed and could be better for him. Ask for some information. I keep following these developments myself since I would not consider a total replacement of my other knee did it appear to be needed!
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MACinCT Mar 11, 2024
Stem cells or wartons jelly injection is helpful but not FDA approved. I went to 2 lectures on this. Costs 7 to 15 k out of pocket and requires follow up with PT, not necessarily found at a facility.
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I think this is one where your best bet might be the ombudsman. You will need to show that there are reputable instructions about your father’s care which the facility has refused to follow. It’s worth a try, because it’s free and it packs a punch. You may not need a lawyer, although it could help.

Remember that the ombudsman’s brief tends to be about official rules and whether they are followed, reasonably and justly, not about your father and his health. Read any information they provide before you write your submission up. It can be hard to get your complaint right on that slant, but could be your best answer if you can do it.
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dreamari86 Mar 23, 2024
I have reported it numerous times to the ombudsman and cc her in all my emails and requests to the facility and they still won't come down and do a report. I wish they would come down, once in a while they will get in on the meeting on zoom, but the facility just promises to help us and never does and falsifies even more records. It is ridiculous that no one has stepped in, especially when the facility is now putting in my father's care plan that "daughter is disruptive, difficult, dictates care as evidenced by: - poor coping patterns, invalid complaints and unrealistic requests and expectations" and the goal they list is "communication will improve between family and staff through the review date" and interventions are "assess causative/contributing factor, encourage verbalization of guilt, speak to family in a calm manner to avoid confrontation, identify family strengths weakness needs and priorities." I am my father's power of attorney and chosen support person, he tells the facility to call me when they are not understanding what he is trying to explain to them, but they refuse then write in the nurses notes that my father runs to me everytime and I report them to the ombudsman and this is a typical behavior of resident. Now they are documenting that resident has behavioral problems because of this. They are violating his rights I believe and still nobody will step in or transfer him to the medically necessary acute care level that was ruled by the Department of Managed Health Care. Every facility is refusing him because of the notes and statements the snf is documenting which are untrue.
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You should speak with a personal injury lawfirm that also has specialty in nursing home neglect and abuse. Have a consultation and they will be able to advise you. Definitely speak with the Ombudsman's Office too. Your father is being neglected and neglect is considered abuse.
Good luck.
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Your father is younger than my daughter at 61.
Can you please provide us with a bit of a medical history as to what has led to his current condition. Can you tell us his diagnosis and his prognosis according to his MD?
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Igloocar Mar 11, 2024
Alva, he had a stroke.
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First thing..he should not be refrained from eating/drinking just because he’s incontinent. He should wear diapers…Your father is younger than me ..I just turned 65…my mother in SNF since April..she’s 96 ..97 this month..every 3 months they have plan care meeting..I found some things written on summary sheet that should’ve been removed & next week I’ll go in to tell/correct them in person. (I’m sick 😷 so have to stay away..) I’m my mother’s advocate and have to be on top of everything..as I go daily to help feed her supper & then do her mouth care)…Hopefully you will go to nursing director in person & administrator to fix this inaccurate records in person. If not, then request him to be transferred to facility that will help him improve. If they refuse to transfer..contact ombudsman..my last resort would be to go to hospital ER since nursing home not taking care of him. Also, a lawyers letter inquiry would definitely get them jumping. Just make sure you document everything and keep accurate records yourself even though the facility doesn’t keep accurate records. Good luck and hugs 🤗
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Medicaid is not required to cover certain services. Here is a list I found:

"Most of Medicaid's Mandatory Benefits are for Acute Care.

Optional Acute Care

• Prescription drugs
• Clinic services
• Physical therapy
• Occupational therapy
• Speech, hearing, and language disorder services
• Respiratory care services
• Other diagnostic, screening, preventative, and rehabilitative services
• Podiatry services
• Optometry services
• Dental services and dentures
• Prosthetics
• Eyeglasses
• Chripractic services
• Case management
• Inpatient psychiatric services for individuals under age 21
• Tuberculosis related services

Optional Long-term Care:

• Private duty nursing services
• Personal care
• Hospice
• Services for individuals age 65 or older in an Institution for Mental Disease (IMD)
• Services in an intermediate care facility for Individuals with intellectual disability
• home and community based services
• Self-directed personal assistance services
• Community first choice option
• Health homes for enrollees with chronic conditions"

Source: https://www.kff.org/mental-health/issue-brief/10-things-to-know-about-medicaid/

- Doctors lose their Medicaid billings 3x more than Medicare, so they lose money on those patients. Low reimbursement rates plus the high administrative burden of dealing with these programs makes them reluctant to accept them.

- Now that all the Boomers have reached 65, there is a strain on available services/labor which is made worse by a medical labor shortage (the US is short 30,000 doctors based on population)

- Compliance: if your Dad is not willingly taking his meds, willingly eating and willingly doing PT, they cannot force him.

- Is your father a US citizen or qualified non-citizen (such as Lawful Permanent Resident, also known as LPR, or green card holder)? They have a 5-year waiting period for Medicaid.

Respectfully, it is not about what you think your father "deserves"... it is what is actually covered by Medicaid and the willingness of docs to take him on as a patient, knowing they won't be fully reimbursed.

Your profile says you yourself are disabled and are advocating to bring your father home... do you mean now, in the condition he is currently in? Or assuming he improves enough to do his ADLs?

May he receive the help needed and peace in your heart on this journey. Also remember to take care of your own self first and foremost.
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If you are living close to your father, which I'm not certain about, there are some things you can do yourself to try to help him as you continue to try to get him additional professional help. There is a very good book titled "One-handed in a Two-handed World" that I purchased myself years ago prior to surgery that was going to immobilize part of one hand and wrist for an extensive period. The 3rd edition was published in 2007, with no newer edition, but much of it is still relevant. It is currently out of print but can be purchased used on Amazon. I know you are concerned with his disabled arm, but realistically, right now he would benefit from being able to handle more ADLs, which can often be done with one arm and hand. In particular, he could handle more of his toileting. If you are not geographically close, you could purchase to book and copy the relevant parts to mail to him, assuming he could handle that cognitively. And although you probably don't want to hear this, at this point, regardless of therapy, he may not recover much more use of his disabled arm and hand. Helping him become more independent should be a top priority.

I did some research on the Aretech Zero G Gait and Balance Trainer. It does sound terrific, but it's relatively new, and people have managed and do manage gait rehab without it! It IS available at some outpatient rehab facilities, although qppqrently not near your father. You could check with the manufacturer, Aretech, https://www.aretechllc.com, to try to find out if any places have it that your father could reasonably access. However, the effectiveness of state-of-the-art equipment and therapy still is limited by the amount of permanent brain damage suffered from a severe stroke.

Regarding your father's erroneous diagnosis of major depressive disorder, please don't obsess further over it! Remeron is often prescribed for people who exhibit some depression without this diagnosis, and having depression following a stroke is quite common. The negative side effects of normal doses of Remeron are minimal, and in the worst case, he will be getting a med he doesn't need. At the same time, the staff would no longer be able to argue that he is non-compliant with his meds. You need to pick your battles, and I think you could fruitfully skip this one!

You can also bring or send him (if allowed) nutritious high-calorie and high-protein snacks if he i not eating enough of the facility food. Elders' failure to eat enough is a common problem discussed on this forum, both for at-home elders and those in facilities. You can search this forum to find the ways caregivers have dealt with the problem.

Regarding physical therapy, I don't know how far away Stanford is, but even if you are not satisfied with the therapy where he is, you should be able to find decent therapy that does not require a 4.5-hour RT twice/week. His post-stroke condition is unfortunate but not esoteric! The negative effects of the trip and his not eating the evening prior probably outweigh the possible additional benefit of therapy at Stanford! Finally, immediately post-stroke, 5 days per week of therapy while he was in rehab would have been a normal amount Medicare would have paid for, probably several hours/day. I know your father is too young for age-related Medicare, but I would be surprised if his underlying healthcare plan and Medi-Cal would cover more than Medicare does in this situation. Similarly, when acute rehab has ended, 2 45 min-1 hr PT/OT sessions, as long as progress continues, is what Medicare usually covers. Inpatient rehab is fully covered by Medicare or a max of 20-21 days (don't recall which) if progress is continuing for that long. Subsequently, inpatient rehab may continue with decreasing coverage, but again, only as progress continues. Again, there could be differences depending on his plan and Medi-Cal. (I do not live in California and am not well-informed on Medi-Cal.)
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