See, this is a problem. I am not belittling you Fred. Really. But if we make HD too big, bad, and different, who is going to bother? Any NH worth anything at all can handle any physical need of any HD resident already. There is no nursing home that doesn't handle people in far worse physical shape than any HD person will ever get due to HD. They already have everything from broda chairs to sippy cups and weighted silverware. They all have physical therapy and will get any equipment a resident might need. Nursing homes already think HD is too hard and taxing on resources. But in many ways it's the opposite. By not taking these residents this NH right here,it was failing. Taking them and they are turning a profit. These are long term residents with mostly a need for costless routine. A one time time learning curve and they are set already. I would rather give a NH $25,000 plus support to try 5 HD residents for one year and let them see how easy it is rather than is not. 2.5 million is one hundred attempts a year and a whole lot of new permanent places for people. And by places..I mean very contented living arrangements where a person feels at home. Now having 2.5 million for anything is a different story unfortunately. With this disease, I think problem solving that requires huge amounts of cash is out. So is problem solving that requires a societal shift to accommodate us. I really think that thinking cheap, and looking for what can be quick hits to bite size problems might be the way to start. Isn't there just a few things we can do real fast and really cost effectively that would help out?

Nah, it can be done, and it actually is done.

In TN they have a couple of Neuro psych facilities. My wife is actually in one of them.

The setting I'm thinking about is more of a wing of a nursing home that has a roaving pysch person evaluate the daily condition of the patient. I've read all of the psych stuff they have on my wife. They evaluate her mood, they plot how her mood changes. She seem to outburst more in the afternoon at 3 pm.

Regular nursing homes don't do that. This one has about 3 of these people roaving. That makes it more expensive.

Then they had meetings to discuss furniture and surroundings for the patient. What kind of music, what kind of things on the table, etc.

Laural lakes has a system. Why not write up the "formula" for it and then present this as a mandated care per region by approaching the nursing home corporations with it?

If you could sweeten the deal by asking the state to get better funding for kids with brain injuries and others with similar neuro-degenrative diseases, you can make a pacakge that lawmakers wouldn't have to cook up themselves.

packaging it correctly with a profit motive, and the nursing home coroporations could buy into it too.

It's not that big. It's pretty simple really. And it would be a great way to advocate for something that this community really needs. We are putting a square peg in a round hole asking a geriatric NH to take care of a young phd or even a brain injured youth.

Fred, what you still fail to explain is what that "profit motive" might BE?

Of course everyone wants a profit motive - especially if you're in the private sector.

You indicated that the profit motive at your wife's NH is that it costs more than most.

Well, obviously, that's a great profit motive!

What do you suggest for those who don't have the money for that?

Most HD families are pretty cash-strapped, Fred!

jl

It's handled by Medicade. If I understand the postings of others, the medicade is larger in Ma and NY for this type of illness.

They can pro-rate for the specialized care if we make a case for it. NH's won't handle young PHD's (young being <50) because of the lawsuit factor of the pHD hurting another patient or themselves. It's a fact of life. I believe the patients at Laural lakes are compensated at a higher rate of medicare than the run of the mill alzhemier's case. (If I am not mistaken).

We can design the proper type of facility that would more closely meet the pHD's needs, we can justify the extra cost to the medicade/medicare people.

Howard put like this in aother thread [www.hdac.org]:

"The rooms are individualized and not typical of typical nursing home rooms. Allison has an aquarium and a hampster in her private room. She also has her own computer (wireless internet is in the building) and high-def TV (satellite TV also comes with the package). Now for the down side. It is difficult to fund Laurel Lake. It is more expensive than most nursing homes. Massachusetts Medicaid will NOT pay for Laurel Lake (At least that was the policy in 2006 when Allison entered). Some other states will pay for it with New York being the most represented. It is therefore necessary for the patient to establish residency in a state that is Medicaid friendly toward Laurel Lake. Even then there are no guarantees."

That's what we need to do, and we need to figure a way to proliferate this type of facility in all 50 states.


1) The facility would better meet the needs of a segment of the population that can't adequately be housed in a typical geriatric faciliy.

2) A more specialized staff is necessary in order to meet the neuropsych needs of the patients

3) A behavioral approach and the extra diet required justify extra personnel.

4) The differnt types of beds and wheel chairs require more money.


This would make it a more attractive proposition for the Nursing home community as a whole. It would give them better tools for the direct care of pHD's. The extra costs would be justified for the care as indicated.

All we need to do is put the plan together, and start marketing it.

If anybody think's it's worth anything. If not, that's my best shot.



Edited 2 time(s). Last edit at 05/26/2009 03:28PM by Fred.

As you know, Fred - there is a vast difference between Medicare and Medicaid - the most significant being that one must be virtually destitute to qualify for the latter.

Fred, there are a great abundance of Americans who fall between the "cracks" of being able to afford nice NH facilities - and not being able to qualify for Medicaid.

My mother just crossed that line. Her previous NH was nice - but it was known that when her limited finances ran out, it would be necessary for her to be moved to a different facility. Her old NH was not Medicaid-funded.

Her new one was - but temporarily lost its license, due to understaffing.

Now, their license has been reinstated - but I have to say that her conditions have declined, considerably.

Instead of a nice facility where she had semi-private space - she has what is essentially a hospital room, with only a curtain to seperate her from the roommate who is a total stranger to her!

This is not due to any change in Mom's medical condition - it is due to the fact that her modest savings ran out.

That sucks!

She worked all of her life against overwhelming odds to earn and save some money - and at the end of it - she has been forced to run those precious savings into the ground, in order to qualify for the questionable priviledge of MEDICAID?

Fred, there are a HUGE number of people who fall between those able to afford costly care - and those who are destitute enough to qualify for Medicaid!

What's your solution for US?

jl

I know, that's the problem.

But who in the world can afford $45-$75,000 a year to maintain their care in a 24/7 facility? That's exclusive of any drugs. How much does it cost to live in a healthcare facility per day?

How much would it cost to actually pay for insurance for that? Who can afford to spend that much in insurance alone? It would even take all the taxes you ever paid for your life to cover you for a 5-6 year stay.

There in no real solution other than to exaust your entire estate and then go on public assistance. And honestly, I believe it's like that in all countries. When you need a certain level of 24/7 care for the long term, you don't have an estate left.

There is a variety of games played to keep and/or distribute assets, but the endgame is pretty much the same. You are left with nothing.

The issue I was bringing up is that we don't even have a facility we can trust to take care of pHD's. If we could establish the criteria and define the parameters for the state, we could advocate for that aid in and of itself.

My ex has LTC insurance. It costs him $700 a year.

There's another point to advocate, Insurance.

First we define the type of care facility, and how to handle HD patients.

(Like Deborah said: " Since she moves so much, they have her hospital bed mattress on the floor with mats on either side (linoleum floors). I found that to be disturbing, but I couldn't think of another option at the time. I was under the impression that it was only temporary. This is June and it's still that way. In the past 6 weeks she has fallen at least 4 times that I know of, two times resulting in staples in her scalp. I am headed back there in a couple of days. I want to have her moved to another facility")

So we have the need to define furniture and the surrondings as well as the staffing.

The next phase would be to help HD families find and secure the type of insurance that could help them, like Marsha's ex had.

Were Marsha and her ex low-income?

Or no-income?

If not, I cannot see how a solution for them is in any way a solution for the hoards of Americans who are not able to AFFORD private insurance.

Fred, I HAD a good income. I HAD good insurance (through one of your vaunted "private-sector" insurance companies!) When I retired, I had to give it up, since the premiums are so prohibitive!

I - a PHD - had to either take over the exporbitant premium payments (darned near as much as my rent!) - or wait 2 full years for Medicare coverage!

That's why I'm advocating for SH6259 - or SH678 - whatever they're calling it noW. The legislations which will waive the 2-year wait for medicare, like it's already being done for ALS victims!

If you want to something USEFUL, Fred - advocate for THAT!

I'll be happy to send you a link that you can use to contact your congressional representatives - just in case you've missed the previous ones posted here.....

jl



Edited 2 time(s). Last edit at 06/01/2009 03:57PM by jl.

Fred also said: "There's another point to advocate, Insurance.

First we define the type of care facility, and how to handle HD patients. "


While I don't deny that those are desireable, Fred - it seems to me like your priorities are kind of mixed up!"

Before either of those suggestions can be in the least useful - one has to be able to AFFORD health coverage and/or care facilities.

THAT'S the "first" thing we have to do, Fred!

What use is it to say, "Well, gosh! You OUGHTA get private health insurance - who cares if you can't afford it!"

Who gives a sh-- about the quality/services of Nursing Homes - if you can't afford to go to one (or send your loved-one to one?)

What kind of fantasy world do you live in, Fred?

jl

JL,

I think you are getting kinda mixed up.

Proper care facilities for pHd's and perhaps a guide to affordable LTC insurance are viable targets for advocacy. Further, I believe they are very reachable goals in the near term.

The group can decide which of us is in a fantasy world JL. Largely this judgement can based on how we discuss issues. Either with facts or sophistry.

Fred, not a criticism, I really don't get something about your vision. What do you think people aren't getting in nursing homes dealing with their physical needs? You keep bringing up furniture and building structure. I don't see those as complaints on average. NH's are about the safest environments there are and I see very little to improve them that will make them more HD friendly. Of the special needs a person with HD might have, I haven't seen any trouble accommodating those. What specifically are you speaking of in this regard?

What I do see is a general misunderstanding of HD in the psychological sense. I really don't see much in physical sense lacking.

Ill just put my little two cents in, as im not in america and feel this thread is specifically for your issues...however i guess lots of issues flow across countries

I agree with Fred that residential placement options for people with HD need to be advocated for. I feel NH in many ways do not provide for PHD in a physical sense or psychological sense (however maybe for some people in some NH they do a great job, but for many they do not).

One little personal example: My mum was asked to leave her NH (after living there for 6 years) and could not return until she could not walk...because physically if she walked she was placing elderly people at risk. Her physical need was she needed alot more space for her to be able to walk around safely. However NHs are generally quite small in space with lots of little fragile people walking around. Therefore the NHs priority was to keep other residence safe from her and to have mum stay in bed to ensure that. Therefor mums physical need to walk around was taken from her to ensure the safety of old people.

I could proably list heaps of things...but i wont.

Youve been able to advocate for great things at Ts nursing home eric, which is fantastic...and a great example of what can be done. I especially like their attitude!

However in my experience elderly people are seen as easier...phd in mid stages are not.

PHD in late stages not walking/talking/heavily medicated...yeah maybe.

Ive heard alot of horrid NH stories lately from HD families...so i think this issue needs to be looked at across the board.



Edited 1 time(s). Last edit at 06/03/2009 05:42AM by Michelle.

Eric said: "What I do see is a general misunderstanding of HD in the psychological sense. I really don't see much in physical sense lacking."

In my experience, that is quite true. And that's a two-edged sword.

On one side there's the general failure to understand "psychological" symptoms.

And given the more common (bit stoll rare!) association of HD with physical symptoms (i.e. chorea!) - I had to be really concerned that my relative lack thereof would jeopardize my qualifications for my benefits.

Mind you, I qualified them, and desparately needed them. Let's face it, there's no way a gene-positive PHD in her late 50s who has lost her job, will ever get ANOTHER!

Nevertheless, I feared that those responsible for making the decisions regarding my disability retirement and related care - would not grant it, lest I exhibit chorea.

I don't have it. That in no way excludes me from ABSOLUTELY NEEDING disability benefits.

That's the only hope of an income I'll ever have!

jl

And at the risk of repeating myself - I WILL.

In the US - I strongly suggest that we contact our congressional representatives and advocate for HR-6259. The bill which gets rid of the 2-year wait for Medicare benefits for those with HD, just as it currently is waived for those with ALS!

NEITHER should be subjected to such a long period without medical coverage.

We're the very last people who should be subjected to such a long period without medical coverage!

If you're not sure who your congressional representives are, you can check it out on the Project Votesmart site. Enter your zipcode, and they'll provide you with the necessary contact information for your local representatives. This is EXTREMELY important! The link is:

[www.votesmart.org]

jl

The explosion in the cost of elder care is just ridiculous. A nursing home bed for one month costs more than Ross was ever earning as a V-P in advertising and me working as a prof librarian.
The problem is that most of the time people are just desperate to find a place and the costs roll along increasing exponentially as in the case of Ross's mother which went from 1200 to 1800 while the pension tied to inflation of .2%. nursing home bills were paid with after tax dollars and only got a $250 tax thing.
When I was in the hospital last year I was shocked at the number of ought to be dead people taking up medical dollars for years and years and years and years and years. I suppose its a credit to the medical profession that they can keep bed bound incontinent people alive. Once someone gets into one of these beds they have most of medicines marvels to keep them alive from antibiotics to enemas.

Hospitals have never been long care beds, they have been short term sick followed by death or leaving the hospital bed or surgical or obstetrical. The net effect I see is that my sister who paid for all the hospital beds in Canada did not get one when she had her first breast surgery.
People have to realize that the whole concept of keeping almost dead bodies has to leave the medical system. We also have to included choices for euthanasia earlier in peoples lives when they can think for themselves. THese days most churches are empty and religious ideaism is at an all time low so there is no longer the popes power in making elderly bedcare the only thing a hospital does.
I also saw for myself that ROss got right into a homewood bed at $1000 a day when he choose to use cocaine which is something he could just choose not to do. The same hospital has a direction from McMaster, ie my neuro can admit patients to Homewood but they don't have one person who does HD or PD or MS or Lou gehrig, yet those people were the previous generationsin homewood

Dusty said: "People have to realize that the whole concept of keeping almost dead bodies has to leave the medical system. We also have to included choices for euthanasia earlier in peoples lives when they can think for themselves. "

Boy, do I agree with THAT ONE!

In the state of Oregon, we have had a "death with dignity" law for over 10 years. I helped to lobby for it. I hope to use it!


jl

There are gaps Eric.

The gaps include the behaviors that HD patients have.

Those gaps are closed with a facility like laurel lakes (at least from what I see posted here by howard and some others).

My choice would be that we advocate to have such a facility defined as a plan. The plan would replicate the services that Laurel lakes provides.

Typical NH's don't accomidate HD patients well. they wan't the patients to be quiet and they can't handle the fact that younger ones attack people around them. They are used to old people.

So let me answer your question "What do you think people aren't getting in nursing homes dealing with their physical needs? "

1) The example made that beds were put around deborahs' mom's bed. Also the fact that I had one hospital order a special bed for my wife. The bed itself was designed so she could not fall out of it.

2) The feeding issue. That should have come up with your wife by now. They would leave my wife alone with food. That was dangerous. Isn't choking like #2 or #3 on the list of causes of death for Phd's?

3) The behavioral issue. It seems like each NH would get some general health doctor and try some "cocktail" of drugs that were recommended by a "nurse practionioner" ?

WTH is a "nurse practionier" anyway? Some guy that can't make it through medical school?

4) A specialized team of Neurologists should be on the care planning team. Not a group of people not trained or experienced with pHDs.

All of these should be used instead of the Alzhemier's approach. It's like putting a square peg in a round hole.

Howard should chime in on this, because he moved his daughter to a specialized care facility for Phd's because the care he was getting in a normal NH was lacking.