Question for experienced PALS and CALS

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Dgnk

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Has anyone out there ever heard of a cooperative living arrangement for PALS? I’m dreaming of a community setting (small group home?) that encourages the involvement of CALS (+ family/friends) but with considerable relief for CALS from the 24/7 commitment. Also the mutually supportive involvement of PALS themselves at whatever stage, contributing according to abilities and interests. ?
 

KimT

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One of my PALS friends and I considered this because we were both slow progressing. That was back in 2015. I'm a CPA and she is an attorney so we would have set it up as a non-profit and done most of the organizational work ourselves. Unfortunately, it was hard to locate property in our area zoned for this purpose. If we had more time I believe it would have worked. I still believe it is a good idea and I also believe a grant could be written or private funding could be attained.

We discussed liability insurance and even spoke with some health care professionals who were interested. We explored various ways to "buy in" and "cash out" and there were several options. We located one property that had four large bedrooms and three large bathrooms. There was a heated pool and the grounds were flat so making it wheelchair accessible and putting in a pool lift would have been pretty easy and inexpensive.

Both of us are single and had little or no family involved.

I still like the idea but decided to go in another direction. I did meet with an RN who had a group home nearby. She took care of five elderly people with both physical and cognitive issues. Her husband did all the ground work and she hired CNAs to assist with bathing, feeding, etc.

I think the next best thing is the dedicated ALS homes (St. Margaret's in New Orleans is one) but they are very costly. I considered that one myself.
 

Dgnk

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Thanks so much for all that info, Kim!
I’m coming from the opposite direction. My brother owns an assisted living/memory care place in Tucson and is buying homes that are abutting the facility. We are brainstorming on this idea for one of the houses...I am slow progressing also and could be quite helpful to PALS who are further progressed, would love feeling useful and productive and being around people who understand this ride were on.
You put a lot of time and effort into your research, and I wonder if you would be willing to share any of the information you gathered.
In any case, I thank you for responding because it’s so helpful to know some of the issues you came up with.
 

Dgnk

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Wishing I could get a little more feedback/input on what people think about this concept. I’m still on a steep learning curve re what the future holds and what would make life easiest for all involved, re care, equipment, outfitting a house from scratch, the kinds of extras that make life more enjoyable etc. I would also like to hear if you think it’s not an idea worth spending my time on.
 

Nikki J

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I think it is a really interesting concept. And I completely relate to wanting to feel useful as a PALS. I am not sure how many CALS would want to leave the family home environment. I am wondering if it could be more focused on support for PaLS without CALS? That CALS- PALS units could join if they wished but there would be a way that PALS could have paid assistance as needed.

You then get into payment issues. The ALS homes that Kim mentioned in New Orleans and Boston take medicaid. Even reasonably well off PALS run the risk of running out of money
 
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KimT

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Yes, the one in New Orleans does take Medicaid but you must be a resident for a year and pay out of pocket for that year (unless you already live there). Last I knew, it was over $15,000 a month.

It's hard for me to give specifics because each state is different and regulations vary not only from state to state but from local area to local area.

Your situation sounds very promising. Even though the properties and land are owned, you still need clearing from zoning and you need to speak with a local attorney (elder law would be useful) to find out any restrictions and tax implications.

I think I would start with a visit to a lawyer and go from there.
 

Nikki J

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Yes the medicaid would be more a backup plan. You don’t want to have a situation where an advanced PALS is broke and no way to cover costs. You wouldn’t throw them out on the street. Same thing happens in traditional nursing homes
 

KimT

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I just think it's so sad staying alive is a decision, for many, based on how much money one has. That was one of the considerations we had to discuss when we were brainstorming a home for PALS without CALS.
 

Dgnk

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Thank you both for this input! Any more thoughts you have, please add.
I will start to educate myself on Arizona regs.
 

Dgnk

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The cooperative aspect is what seems to me would make the money last so much longer. CALS not having to live in, but putting in a shift, or helping with administration or cleaning or whatever. My brother thinks keeping the house as a private group home and independently hiring in the extra help as needed might avoid a bunch of the regs....but as you can tell we are in the very beginning uneducated stages of this idea.
 

KarenNWendyn

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I think it’s a great idea, especially for PALS who don’t have a spouse or other family caregiver and want to maximize social interactions.

I’ve often worried about what I would do should my spouse die or become too ill to care for me. I have no other family near by. I’ve often thought that a group home situation might work.

In Oregon, we have Adult Foster Care homes where ill or disabled adults can live out their days in a house setting with care givers. Of course these are expensive and only variably covered by insurance. The concept may have some commonalities with your idea, but most of the ones I’ve seen have the depressing atmosphere of nursing homes on a smaller scale.

So it would take a special place to provide an upbeat setting where the focus is on enjoying life rather than waiting to die. It’s a great concept. I’d like to see ALS group homes more widespread and available.
 

lgelb

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As you proceed, I would interview staff and P/CALS associated with the NOLA and Boston facilities, and also MDA/ALSA/P/CALS in the geography you're looking at. I think it's a good concept to explore.

Best,
Laurie
 

Dgnk

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Thank you all for your thoughts and feedback. You’ve given me lots of leads, lots of direction for my quest, and the comfort of knowing it’s not just my crazy idea. I do appreciate it very much.
 

KarenNWendyn

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