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The PACE center my mom is enrolled in is not functioning as it is advertised. The place acts like they are hiding the secrets to area 51. They want me to pay $180 for the PO policies and procedures

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Many places go by PACE, so what is the full name of it and where?
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I would rather not due to retaliation.
It's a PACE center (Program for All inclusive Care for the Elderly)
It's a federally funded duel enrollment (Medicaid and Medicare) that is supposed to allow caregivers of participants to be able to go back to work and not worry about their family. There is one in the state I live in and it doesn't operate as it is advertised.
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Pace appears to be a federal program which allows the elderly to remain the community when they require nursing home level care. On the Medicare.gov website, it says nothing about it being a program that allows caregivers to go back to work without worry. ( my mom is in a nursing home; let me tell you, there is no level of care for a frail elder with dementia that doesn't involve worry. Life changes in the second it takes the nh to call and say " your mother has fallen or "your mom has pneumonia".

Each state is responsible for its own Pace program, including payment schedules. Can you tell us what specific problem you're having? There is a space on the medicare.gov pace site to get in touch with someone to ask a question, have you accessed that?

Pace appears to cover everything from adult day care, dental, prescriptions, etc. You'll get better answers if you can ask a more specific question. I doubt anyone is monitoring this site,, so I would worry too much about reprisals.
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What is po policies and procedures?
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Minimum services that must be provided in the PACE center include primary care services, social services, restorative therapies, personal care and supportive services, nutritional counseling, recreational therapy, and meals.
E-mail to pace@cms.hhs.gov with questions. Be sure you have a signed HIPAA release from the patient.
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PO = PACE Organization and each one has internal Policies and Procedures that are specific to that PACE Organization. The one my mom is enrolled in is the only tribally sponsored PACE center in the country and the only PACE center in the state I live in. They are not following the federal guidelines and the state is doing nothing because they claim the PACE center has tribal sovereignty, even tho it is open to everyone who qualifies under the PACE requirements and is funded through CMS (Medicare and Medicaid).

I have contacted many people in those organizations (NPA, CMS.gov, Area Agency on Aging, state representatives and other PACE centers) and after I spend 20 minutes explaining what PACE is, they tell me to call someone else or they say they will call me back but instead they contact the center director or manager and that caused retaliation against me and my mom. The only resolution from the PACE center is "if you aren't happy with our services you can disenroll anytime you want."
Since we live in a rural area, disenrolling leaves us with less options.

I was just curious if anyone could tell me how other PACE centers function?
Do they actually follow state and federal guidelines and allow participants access to policies without charging $180 bucks?
Do they offer everything in the enrollment agreement or do they make a bunch of false promises that take a pile of grievances and appeals to get them to follow through?
Do they promise the world and then forget your name once a person signs the enrollment agreement?

Odds are, nothing can be done without hiring a lawyer but I thought I would try to understand how other parts of the country function.

Thanks all for replying.
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So your PACE sponsor is who? To me that is going to be the key to figuring out what system is in place. Then if the sponsor is a tribal entity, it's going to make all things more complex as I'd bet IHS / BIA oversees your PACE program. So there is the local SO, then its tribal entity; then state (for the medicaid diversionary funding); then IHS/BIA; then medicare (CMS & it's funding & regulations) and whatever PL 's that enabled funding.

About access to policies, you should be able to go on-line and download & print out. It will likely be a pretty involved drill down to get all the hearings, public law items, contract for service agreements, etc. but it's all open records. $180.00 fee for someone to do this for you is not unreasonable. BIA runs in the red.

PACE isn't at all about have services done so the caregivers can go back to work. It is about enabling elders who qualify to need nursing home level care to stay in their home and have a comprehensive care system to make that happen & requires that family or someone is still is there to facilitate between the eider & PACE. If your expecting that it is going to take care of all caregiving, well that just flat is NOT going to happen. There is a PACE program (Benson center) minutes away from our home in the Marigny 'hood in New Orleans, it's sponsoring organization is Catholic Charities. I see the vans all the time that run residents from the various Christopher Homes (catholic charities senior housing - my late MIL looked into living in the CH highrise close to us but went into NH) over to Benson for full day adult care (activities, medications, health monitoring, meals, etc). A lot of PACE seem to be awarded to catholic health systems - Alexian Brothers, sisters of charity/Asension Health groups. Makes sense as they already have neighborhood health centers & hospital systems up & running & a history of service & grant getting. As Indian Health Service has clinics, etc existing it makes sense for them to be a PACE SO.

Since its Medicare, PACE like hospice is self - directed, so you can choose to join. So your elder can choose to dis enroll tomorrow if they want. But if you sign up for PACE - like for hospice - you are required to get all your care & services within PACE or your hospice vendor as this is required by medicare for you to get hospice or PACE benefits. Medicare has a capped payment system for PACE like it does for hospice. You can't go to the urgi clinic or ER or see an MD outside of PaCE/hospice and expect Medicare to pay, providers have to be from within the closed capped system. As Medicare is self directed, you are expected to understand & abide by the rules - like its your responsibility to make sure the eye doctor accepts medicare. Often this hard to understand to do. Being in a PaCE solves a lot of payment issues as everything is covered as long as you comply with the enrollment rules.

It may be that PACE just doesn't work for you all, that your expectations of what the enrollment agreement is supposed to do just won't ever mesh with your area sponsoring organization program of care is setup to do. What I've found in this Medicaid &medicare adventure with my mom & MIL, is that elders & family are expecting Ritz Carlton levels of service and are finding that at best it's Quality Inn; and that almost everbody is unrealistic about the cost of Heath care and the demands of caregiving.

If your family member qualified for PACE, they had to show the need for nursing home level of care. You may need to step back & do a reality check on what the situation is. Like for my late MIL, there was no way she could ever make it at the Christopher Inn, she was too blind & limited ambulatory for what they expect residents to be, so NH instead, but she continued to look for senior apts even when she was at the NH - refused to face her reality. But I digress, since PACE isn't working, I'd suggest you start looking at facilities to move your family member into or private pay for home health assistance or see if they can qualify for at home hospice. Your PACE probably has a staffer who deals with enrollees who get to the point of needing 24/7 NH care - I'd ask to meet with them for NH names.

Personally, I don't see that getting legal involved is going to do anything but lessen your wallet. Yes there could be some over promising of services verbally, but there also could be a misinterpretation of what you think care should be. They likely are meeting whatever minimum required in the agreement.
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Thanks for replying igloo572

The Tribe is the Cherokee Nation of Oklahoma and the PACE center is Cherokee Elder Care. Last February CMS found over 20 pages of deficiencies and the director was forced to resign in December because the issues were ignored. Oklahoma ranks 49th in nursing home care so placing someone in a home is a death sentence. Unfortunately, this state ranks last in everything and is behind the rest of the country by 20 years. Since it's the only PACE program in the state, the state employees don't even know what PACE is. They put the cart before the horse and dropped the ball.

Because of their ignorance I memorized the CEC/PACE enrollment agreement and the federal guidelines CFR title 42-460.2 thru CFR title 42-460.210. I haven't misinterpreted what they are supposed to be doing. It's clear as crystal. What I have found in this program is basically fraud but since it's sponsored by the tribe, no one will enforce the laws. IHS and the BIA have nothing to do with PACE centers because it is a contractual agreement between CMS, the state and the tribe.

Again, I thank you all. I have learned that only people who have participated or directly dealt with a PACE program can relate and understand to what the PACE program is supposed to do.
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