Old 09-13-2018, 08:06 AM #1 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Question for experienced PALS and CALS

Has anyone out there ever heard of a cooperative living arrangement for PALS? Iím 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. ?
Dgnk is offline   Reply With QuoteReply With Quote
Old 09-13-2018, 10:15 AM #2 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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.
KimT is offline   Reply With QuoteReply With Quote
Old 09-13-2018, 10:43 AM #3 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Re: Question for experienced PALS and CALS

Thanks so much for all that info, Kim!
Iím 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 itís so helpful to know some of the issues you came up with.
Dgnk is offline   Reply With QuoteReply With Quote
Thanks from
affected (09-13-2018)
Old 09-14-2018, 07:05 AM #4 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Re: Question for experienced PALS and CALS

Wishing I could get a little more feedback/input on what people think about this concept. Iím 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 itís not an idea worth spending my time on.
Dgnk is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 07:44 AM #5 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,423
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,423
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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

Last edited by Nikki J : 09-14-2018 at 08:14 AM
Nikki J is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 08:15 AM #6 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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.
KimT is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 08:44 AM #7 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,423
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,423
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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
Nikki J is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 09:29 AM #8 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,832
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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.
KimT is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 09:34 AM #9 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Re: Question for experienced PALS and CALS

Thank you both for this input! Any more thoughts you have, please add.
I will start to educate myself on Arizona regs.
Dgnk is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 09:41 AM #10 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Re: Question for experienced PALS and CALS

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.
Dgnk is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 10:20 AM #11 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,003
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,003
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Question for experienced PALS and CALS

I think itís a great idea, especially for PALS who donít have a spouse or other family caregiver and want to maximize social interactions.

Iíve 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. Iíve 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 Iíve 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. Itís a great concept. Iíd like to see ALS group homes more widespread and available.
KarenNWendyn is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 11:24 AM #12 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,113
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,113
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Question for experienced PALS and CALS

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
lgelb is offline   Reply With QuoteReply With Quote
Old 09-15-2018, 09:45 AM #13 (permalink)
New Member
 
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Dgnk Dgnk is offline
New Member
Join Date: 2016
City: FL Keys/Sterling MA
State: Fl/MA
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 23
Dgnk is on a distinguished road
Default Re: Question for experienced PALS and CALS

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.
Dgnk is offline   Reply With QuoteReply With Quote
Old 09-15-2018, 10:14 AM #14 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,003
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,003
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Question for experienced PALS and CALS

In terms of the logistics of setting up a group home for disabled people, this website (on Oregon adult foster care homes) may give you some ideas.

https://www.google.com/url?sa=t&sour...iakkW0oJvkSKPu
KarenNWendyn is offline   Reply With QuoteReply With Quote
Thanks from
Dgnk (09-15-2018)
Reply

Tags
cals, family


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Question from a CALS to PALS JennyC People With ALS - "PALS" 8 12-17-2016 04:36 AM
CALS and PALS Question faithandlove General Discussion About ALS/MND 4 09-04-2016 11:53 AM
Survey for PALS, CALS, and CALS of deceased PALS. sadiemae General Discussion About ALS/MND 7 03-22-2012 05:32 PM
Question: CALS and PALS only area? BarryG General Discussion About ALS/MND 12 03-18-2009 01:17 PM
CALS has a PALS question trying to stay positive People With ALS - "PALS" 3 10-22-2007 02:06 PM


All times are GMT -5. The time now is 03:55 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016