awesome Barb! Fred: I do agree that there is a business end to what we are talking about and that policy and politics play a huge role. Reimbursement rates from the fed are not adequate and let's face it, private pay is better...discharge planners do suck when they are bad...(in plain English) I agree. I also think that if you, yourself have an advocate (as a caregiver) that can push back it is more helpful. While they may not like clients second guessing them, they tend to respond to other professionals in a better way. They may not like it but they show respect that sometimes they do not show the client themselves. I respect your opinion and do not think you are far off. My problem with this COE's Social worker revolves around her view of me as hysterical....while I have had some hysterical moments, they have been warranted.

Maybe it is COE SW problem in general. Don't even get me started on the Indiana 'Rock Star' social worker who is a liar, cheat and theif who along with all of that broke at least two of the National Association of Social worker code of ethics. Yet the COE chose the social worker over a caregiver and a hardworking state board. National HDSA backed the COE and the social worker with not a thought of what is best for HD families or the cause.

There is no advocate for my family in Indiana, I would never trust that this particular SW will ever have my best interest at heart since I had a part in his sanctions from the board and his removal from the state board.

Klivin if you social worker thinks you are hysterical you have a problem and are probably best finding your own social worker. You have to do what is best for your family and I don't think the COE's keep that in mind.

I will just point out for what it's worth that I hear that Columbia hates the Lighthouse and warns people away from it.

Marsha: seriously? Why? I have never specifically been told to stay away from the lighthouse....but told to limit my internet time. While I readily admit it was a problem (my being on the internet for hours) I think strategizing and helping a person through that is better than...stop.

MRO: yes, she thinks I am a hysteric. I must admit that there were times that I called in a panic, but again....you work through that with a person...because I had reasons. Like my husband had been in a multitude of accidents, so of course I thought it was HD. Never thinking it was drugs. They all had me convinced I was crazy....including my husband....you think 3 trained professionals may have picked up it was drugs.....NOPE. So we will stick it out there until June, when my friend stops interning. thanks all.

Marsha,
Probably warns folks away from the lighthouse because when we share info here, it makes it a little tougher to pat us on the head and tell us politely to go sit down. My knowledge of this disease is not only from my own experiences but from all who are willing to share what they know right here. This place, these families, you and Steve, well... we freaking ROCK!
here's to all of us!

Carla

From my experience with that particular SW at that COE warning folks away from the lighthouse is right in line with how they operate. They had no interest whatsoever in what was coming down the pipeline - didn't even want to be aware of it. I was amazed that they knew nothing about huntexil and encouraged us not to put my husband into the trial (we were all set for him to start). when my husband was diagnosed there we were told that he should take a multi-vitamin and eat a variety of colors of fruits and vegetables and we were sent on our way.

Unfortunately , it sounds like most of us has had problems with social workers. Marsha, I would like you to know that the SW at our COE thinks highly of you and the lighthouse.

Marsha I was told more than once to be careful of websites like this since they tend to negative. I think the word negative was confused with realistic and honest.

Klivin in my neck of the woods, if the social worker doesn't like you he just doesn't return your calls leaving you on your own essentially. He gets away with it because there is no accountability and he is the one taking the calls on the info line. If a complaint gets thru it is written off as as he is too busy and his workload is too great. So it is a no win situation for those squeaky wheels. Kiss up and all is fine.

I think it is ashame that you have to "stick it out" there needs to be a better alternative.

When I first took my daughter to the COE at Emory in Atlanta I was also told to stay away from the Lighthouse. I think that I was told this because the doctor sensed that I knew a little too much about HD for his own comfort zone. Many doctors are uncomfortable when the patient/caregiver seems to know more than usual about an illness. Our neurologist at Mass. General is just the opposite. She has talked about this website often and seems to appreciate my knowledge of HD, much of it gleamed from this web site.

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Regardless of that everything you think you know about HDSA Indiana is wrong.



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No matter how much cats fight, there always seem to be plenty of kittens. - Abraham Lincoln

Fred