Care Coordinator/Private Assistant?

[Mt7705]

Is there such a thing as a care coordinator you can hire to do logistical things like researching and ordering mobility equipment, submitting to Medicare, doing the paperwork and checking in daily with the pALS and family to make sure everything is moving along?

My mother is progressing faster now, and really resisting a lot of this stuff, but I think most of it is just fatigue. She doesn't want me to help since I have a new baby, so I’m met with a lot of push back when I try to step in. We are happy to pay for this service if it exists. Anyone heard of such a thing or know where I might look?

 

[Nikki J]

Geriatric care managers exist. I don’t know anyone who actually used one and I expect quality varies a lot but you might want to look into this and see if there is one that meets your needs. But I would check in with the social worker if your clinic or alsa have one first

 

[SeaGunny]

Mt7705, I wish there were!!!!!!!!!!! However, I really think this is and could be done by a Triage Logistition who needs to be linked to research, and other source interface people. When one of my Home Care (Hospice.) providers, I asked for a specific type of wheel chair but PALS looked like a wheeled thrown for the king in a Wizard of ID cartoon strip.

 

[lgelb]

Some patient advocates, many of whom are nurses, focus on these areas. Most often, the one who knows the most about mobility equipment is not the one that knows the most about billing, but then again, Medicare reimburses very little or nothing for most equipment, apart from the power wheelchair, and definitely nothing if the supplier or store is out of network. So I would focus on the best tool for the job, so to speak, ahead of what Medicare might or might not reimburse.

Some advocates focus on geriatrics, but that is not really necessary in this case.

You can find a Board Certified Patient Advocate here and sort on State. Unfortunately, you will then have to Google them separately to see what their services are. There are more local lists, but often advocates have to pay to be listed, so they are not as complete.

Best,
Laurie

 

[SeaGunny]

What I am finding is that a Patient Advocate has a focus on patient care. After the advent of the Birth Control pill (early 1960s), family size got smaller - meaning family internal support diminished. What I am finding is that more and more couples are by themselves and are the extent of the family support system. A church group can extend this, but the probability of support diminishes with lower church attendance.
I worked as a Logistician. (dictionary doesn't even recognize the spelling of this word).

As such (my working experience), I got whatever the client needed. I got sun tan oil (this needs a Material Safety Data Sheet or MSDS.) to aircraft parts even major end items (end items are items that when gotten are ready for end use or user uses). A tooth brush is a consumable due to low cost and - a generator or refrigerator is an "end item". A coordinator such as this needs to be "plugged in" to the various services to know what service or item can be delivered and at what cost. He or she also needs faith in the provider. Think of this person as a traffic light. Go Left, go right, stop, yield or go straight. The idea is to put the patient on the right track to obtain goods or services and shorten the time line from request to delivery and at minimal cost - and get them the needed support - giving them a heads up to bumps in the process ahead.

The other thing is that this person NEEDS to stay in touch and need to be available - knowledgeable about what is facing any particular patient - they physical size, abilities, an idea of their financial strength. Issues, conditions change - just like the weather. Another thing, is that we assume is that everyone has a computer and an e-mail- AND that it works - And that it works with whatever program is our favorite. All of these things are false. I have hated computers since I first started playing with them! I used to use a stylus to punch out the square holes in the old IBM cards. Not everyone has a computer or access or even an e-mail account.

In short, the "person" we are all seeking, does not yet exist in the support tree. Certainly some of those in the matrix are well versed, qualified and knowledgeable - but they aren't the basic "trigger" or the person who "makes things happen" on a full spectrum of support services.

Another "planning" thing I see too little of is a plan for disaster (big or small). When things go wrong ~ and they will ~ what is the backup plan? ALS (here in Texas) does have a contact person but it has been months since I have seen or heard from them. I guess I am as at much fault as they are.

Sorry for the rant.

 

[lgelb]

SeaGunny, never any need to be sorry about CALS rants, but I think you will find that BCPAs and senior care consultants today are more knowledgeable and connected than the traditional definition of "patient advocate." I also encourage P/CALS to ask for a case manager at their Medicare Advantage or other commercial plan, if applicable.

We have discussed emergency planning, here for starters. You can also use the search box for other threads, and certainly set up your own support network for "what if," starting with basics like shelter, food, water, power. From my and others' experiences, I would be shocked if the ALSA really played a role in addressing disasters "on the ground" regionally, but would love to be wrong.

 

[Tomswife]

The work of running after/alongside the runaway freight train of fast progressing ALS is like a PT job with many facets and a steep learning curve. Issues - What is needed when and which model?
Which wheelchair?
With regard to wheelchairs, I was advised by the NY Metro Chapter of the ALS Association. They have a specialist in accessibility. And THIS FORUM was extremely helpful. We ended up with 3 WC. Lightweight transport; large high back manual; power wheel chair.

The rest of the DME was requested/demanded by me. Some things took too long. So request b4 needed.
Which bipap (pulmonologist decided). The pulmonologist ordered the bipap, suction machine and cough assist. THE PCP ordered the hospital bed and hoyer lift. (We had left the ALS clinic b4 we needed DME.) The DME providers (our health care system uses specific ones) also have knowledge if you can the knowledge expert on the phone.

With regard to submitting to Aetna Medicare Advantage, I never did it. The providers of the DME did that after they receive physician order.