ALS Residence

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jaketheo

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Hello All,

If a 10 bedroom ALS residence were to be built what would you want it to look and feel like. What features and characteristics would you want it to have. This is a concept under consideration so please feel free to give us your comments.
 

jaketheo

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ma
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Als Residence

Hello All,

Could someone direct me to the appropriate forum for information. My organization is looking to build a residence for individuals with ALS. We would like to get advice from anyone who has some thoughts as to what the home should provide and look like.Things are in the pre development phase so any advice would be helpful.
 

Al

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Hi Jake. Give us a bit more info about it and here would be a good place to get comments. The info from your PM would be a good start.
AL.
 

jaketheo

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Als Residence

Hi AL,

We are a not for profit health care provider in the Boston area. We received a grant to build a Green House Project. A Green House is a residence that has 10 private bedrooms,private bath and shower. We are regulated as skilled nursing care. The house would be medicaid/medicare certified offering vent support to those who need it. The goal of the house is to be a residential model. The house will bridge the latest technology with the most compassionate and competent care. Each house has its own kitchen and cooks so there is no institutional meal service. We do not want the house to only be for those with no option rather a place that an ALS individual may choose to make it their home. All bedrooms are private to encourage family members to stay over whenever possible. The entire community woul be set aside for ALS folks and their families.We are working with the MA chapter of ALS but welcome advice from others.
 

hboyajian

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This sounds like a great idea for people who are not able to stay at home and receive the level of care that they need from their family, or for single people who have no extended family in the immediate area. Many PALS' first choice, though, would be to stay in their own home and to develop care accommodations there. It sounds like you are planning to make this more like a home away from home, which is good.
Some ideas I have....wide hallways and big enough spaces in living and dining areas to allow people in electronic wheelchairs to maneuver and hang out together. In general, there will need to be space in common areas for and organization around the wide variety of each person's assistive equipment, of which there will be a lot. You wouldn't want to have to hang out in your bedroom access the cough assist machine or Bi-pap and get isolated. The kitchen will need more than one cooking area to take care of many different dietary needs, including boiling PEG tube feeding equipment, blending foods for those who cannot eat solid food, and cooking regular meals for those who can still eat them. Even with all that, people need a sense of community while having meals and to be able to sit around a table with companions. More than one bathroom, maybe even three. Bathrooms will need a lot of research on your part to have all the equipment that is needed, bath sliders, lifts, bidet toilets, etc. for people to maintain as much independence for as long as possible and then get help with dignity, not awkward arrangements. You also need computers available, either in the private rooms or in a computer room with one for everybody, as the computer is many people's way of communicating and remaining part of the wider world, and some even do artwork or write books on them. Outside the home, a beautiful garden with tall raised beds that people can reach if they are still able or at least see easily to enjoy. Also, lots of benches with backs for people who are still somewhat mobile to wheel their walkers to and sit to rest as they walk around. Well, I suppose now I'm dreaming if you are doing this right in the city.
Anyway.....Lots of windows to see out at the garden and the trees and sky, and of course, all on one level and with ramps as necessary....and a wheelchair lift van to get people to and from appointments and go places.
 

jaketheo

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ma
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chelsea
als residence

Thank you for your comments.If I didn't know better I would think you were on our planning committee. You have excellent insight and I will keep you posted as to our progress. As for the bathrooms. There will be a ceiling track lift that will go from the bed to the shower and private bath. Thank you for your imput.
 

CindyM

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Hi Jake-I also thought about the social needs of ALS patients. The population will be somewhat different from elderly or dementia residents who have cognitive issues. You will be serving alert and aware people, many of whom are internet savvy and have a wide range of interests. Perhaps a small library with lots of books on tapes and room to play a round of poker, and some raised beds outside where residents can help with the gardening. And you might link to your city's handicapped van (if they have one) to take people to Boston's free concerts and such. Just a thought. Cindy
 

jaketheo

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als residence

Thanks Cindy very good thoughts
 

Omar

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Hey Jake,

What a project, I love it..
I suggest flexible floors with kind of (amortisseur) shock absorber for PALS who still can manage to walk, in case you want to use stairs, better to use electronic stairs and alleys.
Touch switches for opening and closing the doors, windows and taps etc.; water beds and Massage chairs.

Omar
 

Lorie

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ALS Residence A Great IDEA

Jake, First of all could you post or PM me on what organization you are? I would like to check out our local area. We need something like this here. Timothy and I were discussing this same issue about a month ago. Patients with ALS needs to live as indepedently as possible. Most people probably do like being at home. Timothy would like a place like this, My Mom and brothers and myself are doing the best we can. But I do think he would like more independence. He can't use his arms and hands but can still walk with assistance a talks very well.

Suggestion: An entertainment room for watching TV together or listening to music. Music is good for the soul. Also, several Lift Handicap Vans to schedule outings, so they can be out like other people and be involved with life. That is one of Timothy's complaints. He don't get to get out much. Like field trips. Family members could be invited, they could be with there loved one and help with the care.

It is nice to see that there is an orgainzation doing this. We need to start a network of more of these ALS Living Centers.

Lorie,

It is 12:50 a.m. here. This just made my day! :-D
 

emjoi

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I'll throw in one...
Soft, comfortable, high backed, easy chairs.

You are dealing with people who often have trouble breathing lying down. They need somewhere to rest, and even sleep, that sits them up. They are also people who have lost most of their body fat and muscle... their natural built-in cushions.... so they need a bit of softness when they sit down.

And a good garden.
When you are stuck in a hospital, no matter how nice, you need to be able to get out for a bit and walk or drive through something peaceful. And carers need that escape too.
 

patricia1

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I think a big screen TV to get videos of our love ones at different events we are unable to attend This would keep the memories alive.Pat
 

John1

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Jacketheo,

It might be a bonus if you could set one room aside for short term use by PALS. If they could use if for a week or two, it might be a pleasant change from home and would serve to give their (often stressed-out) caregivers a break.

John
 

Montana Carol

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What About Cost?

Will this ALS residence be subsidized? Will it accept Medicare or Social Security disability caregiver payment? My developmentally disabled adult son is a resident in a group home in Idaho, run by Seven Oaks Community Homes, Inc. There are about 15 or 20 formerly-private residences in Post Falls which have been retrofitted for wheel chairs (several have additional features designed for people who need physical therapy after injuries or surgery, I believe). Each house is staffed with 2-5 caregivers who cook and otherwise provide regular family-type care for the residents. The residents are divided into compatible groups as much as possible -- age, gender, mental capability, etc. -- and those who are able are employed at and transported to and from a sheltered workshop (called TESH) where they earn a small wage and feel useful doing repetitive work fitted to their skill levels. They get hospital care when needed as well as regular medical care, and it's all funded by my son's Social Security disability. We don't have to pay anything. I am his legal guardian, and they treat me with the utmost respect, consulting me and requesting my consent before undertaking any significant action on his behalf, or when he hurts himself and requires any special medical procedure. The organization is well regulated, with adequate but not burdensome (as far as I can tell) government oversight.

We feel so blessed to have found this group home situation for our son at a time when we didn't know how to cope with our challenges, and I feel like the concept could be applied to other long-term care resources. I'd like to know what your plan is for the ALS residences.

Carol
 
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