I'd like to publically explore a fantasy of mine.

Hey! Get your mind out of the gutter.

No. What I'd like to do is put together a business plan for an international network of HD Service Facilities whose primary focus is servicing the needs of HD+ clients. Of course, clients with Alzheimer's and other neurodegenerative diseases might also be able to part of the market base, but I'd like to explore servicing just the HD community and then consider the needs of other communities.

The goal of this game is to identify the services that the organization might provide, prepare a business plan, and determine the viability of this venture as a real business venture.

All are free to contribute their ideas and if anyone feels that they can take the ball and run with it then I'll be rooting for your success.

Steve



Edited 1 time(s). Last edit at 04/26/2011 02:26PM by SteveI.

How can we get our mind out of the gutter when you are asking how to milk a hemp?

A what of a what of a what??? Sorry steve i don't understand what youre saying

Sorry. I'm still sober. It will make much more sense after I've had a few drinks later this evening.

Cost of Care

I was reading the Delaware Ombudsman Annual Report and they referenced the Genworth site for cost planning.

I found the following page interesting and might be useful.

[www.genworth.com]

would this be an online community or a place where you would physically go.
because virtual would also be cool! like if I could talk to barbs dr with a video consult.
Laura

Let's add remote consulting to list of possible services to be provided and flesh it out.

HDSA periodically explores this issue with medical service providers and finds that there continues to be either legal obstacles or just simply fear of being sued for misdiagnosis.

However, I know there are some pilot programs that were started to see how beneficial this would be. Also, another question is "Would insurance would cover this type of 'cyber-visit?'".

Is this what you were asking? ok, i thought you were just looking for more links you could add to the link page here on the site or something, that's what i meant is i dont understand what your asking, your question was big and wordy, and i get frustrated when i don't understand something, sorry lol

Oh yeah, and how DO you milk a hemp lol you and eric are too funny.

Eric's the funny guy. I'm just the straight man.

Also. I'm talking about real physical building the provides badly needed services. Cyber services certainly should be possible. We're tired of reading the stories about HD families unable to get help. There has to be a way to make this happen ... when we decide what "this" is.

Its a shame because so many people just do not like to go to docters and reading online isnt enough.
and finding a good one is also hard.
I would consult hd specialist, allergist,dentist, dermatologist,nutritionist

Steve, I agree with your idea and proposed improvement to address the large void that exists.BUT, it will be a monsterous assignment to have financial resources, profesional people, general staffing etc etc when its a world wide shortage of HD trained people not just North America. Also with a treatment coming (I hope!!!) soon , who is going to address the huge surge in getting PHds to handle the treatment and the volumes we expect worldwide. North America is understaffed for pros able to handle the HD clients we now have and being an orphan disease we will draw far less pros in the future, when the other big names like cancer etc have the money they raise for research etc.Laura; the HD Clinic Barb speaks of is a much smaller version of what Steve is suggesting. For a client to access it locally now, the wait can be up to three months but usually its longer.

Steve,

Here's a business plan format for non-profits. SCORE is sponsored by the SBA. [www.score.org]

Will

Thanks Will. I'll use that as the template. We haven't even discussed whether this should be a non-profit venture or a for-profit venture. But I'm leaning toward the non-profit angle.

Regarding the monstrous size of this effort, it seems that the only approach is to take it in small bites. I'll building the business model on the hdlf.org Web site in a bookish structure. Since I can only do this as my paying job permits, no doubt it will take awhile. There's a ton of research and information to be collected.

I'll start fabricating a generic business model with Delaware specific attributes (since I live in Delaware). Hopefully it will eventually develop into something useful.

I guess i don't get what "this" is, sorry just confused about it, but i guess whatever it is it'll be good



Edited 1 time(s). Last edit at 04/26/2011 11:01PM by Barb.

I'll offer whatever resources a humble public school teacher has to offer. I'm pretty good on the computer I know The Strong Memorial Center for Excellence in Rochester New York has already started doing cyber consultations on a limited basis, so that might be a good source of information as far as insurance coverage. I think counsellors trained in HD area must. That is my biggest issue here -- local counsellors I have been to have NO experience with HD, my own family Dr had the barest recollection of what it MIGHT be from "back in the day" when she read a paragraph about it in a med school textbook. I also think we would need to reach out to HD families and create some kind of map to see where the pockets lie. My boyfriend has a rather large family, which itself creates somewhat of a pocket in the Syracuse/Utica area, and Syracuse has a support group locally, so there must be other families in the area. We would also need to (IMHO) target med schools in the areas of these HD "pockets". If they realize there is a need (translation: enough patients to be profitable) that might sway things our way. Just some thoughts off the top of my head, but I think it's a good discussion. People with passion can make things happen, and it's impossible NOT to be passionate about HD if you're living with it on a daily basis.

Barb,
I think Steve would like better places for people with HD to go.
Similar to the place you go in canada.
Laura

1) Offering AT HOME doctor visits. Neither my Mom, nor my grandother with Alzheimers would go to the doc for so long.

2) Offering in-home personalized consultations, for how to adapt the home to the changing needs of someone with HD. And possibly being the 3rd party to make recommendations for someone to stop driving.

3) Walking people through legalities, and guiding them to services already available in each area/country, kindof like an elder-care attorney here in the US and/or having someone guide you through medicare disability applications, and explain how much gov't help is available at what points (certain ages, or certain level of assets), maybe also taking a look at any private insurance someone has, and advising how to best access benefits. Again, if possible this could even be done at the home of the person with HD & their caregiver.

4) Assistance in finding in-home or nursing home care.

5) Pre-qualifying docs and/or having a recommended doctor list (people who actually treat HD and keep fairly up to date on the latest things).

6) Assistance with house-keeping, shopping and/or meals. Sometimes "routine" stuff like weekly grocery-shopping, laundry and grass-cutting can be done more easily by the caregiver since the person with HD expects it, versus non-routine stuff like a trip to Home Depot, the minor home repair that follows, or more thorough spring cleaning. In other cases people may need help with routine stuff too.



Edited 1 time(s). Last edit at 04/27/2011 12:37PM by smiling sara.

I like all your ideas sara. I really hate ging to the dr just like your mom so I thats why I have fantasy of a virtual dr.
but its really also because I never thought I could get a dr to come to my house.
Laura

Started the ball rolling today with a short blog entry and will take small bites out of it every day or so. Hopefully on weekends the bites will be bigger.

[www.hdlf.org]