Several weeks ago, I got a call from a fund raiser who is associated with Johns Hopkins. She was calling because my husband is a patient in their memory clinic, and to me the gist of the conversation is that they are looking for money. I was quite surprised, because it seems to me that the families whose LO's are living with the disease are facing significant expeditures for their care; they would probably be the last ones to be able to make a meaningful contribution! They have sent us letters asking for money in the past, but this is the first time anyone actually called. Since she piqued my curiousity, I agreed to have her come to our home to talk to us. She has never had contact with an EOAD patient/caregiver before, and I plan to use it as an educational opportunity. But it occurred to me, when I don't know what the future holds, what funds will be required for my husband's care, how in the world can they expect anything other than a routine contribution? It sort of seems insensitive to me for them to even make the request. Wondered if this has happened to anyone else?
Marilyn, you didn't address this, but I'm wondering why/how the fundraiser would have a list of memory clinic patients? What happened to all those privacy protections? The wrole thing seems rather strange.
Good question, Folly. I will ask her--she'll be here this afternoon. I've done some volunteer work for Hopkins re EOAD--speaking engagements, I'm on a committee, newspaper interview, etc. It may be because of that.
WOW! If the hospital has provided a list of names and phone numbers of patients in a certain area (or ANY area) of the hospital, this sounds like a HUGE violation of patient privacy!!! Nice of you to invite her to your house for a real taste of the caregiver experience....but, knowing me, I'd be real nice........then directly on the phone with my lawyer who would be on the tail of the hospital administration immediately. Maybe the results could defray the future costs of your husband's care? I'm NOT being 'flip', either. I'd be VERY upset and ALARMED about their intentions (as well as insulted) if that happened to ME. (Aren't we already paying out the seat of our pants for care in hospitals and nursing homes???)
sometimes if you read the fine print when you sign onto becoming patients they say they and their' affliliates'you are allowing them to solicite you for there purposes. i know we regularly get privacy updates saying the same thing about our banks and 'affiliates' or credit companies and affiliates etc -that are associated with these companies we do business with. unless you speciifically write them saying no to any solicitations sometimes they can get away with it. could be this is what is happening with the donations requests? also i think non profits dont have to adhere to the strict do not solicit laws but could be wrong. divvi
Well, the person came. She was very nice and I think they did get my name from the volunteer work I've done, not the clinic. I vaguely remember signing a form before a speaking event--Hopkins has so many forms, they are as bureaucratic as the government! Anyway, she wanted to talk to us to see if we'd be appropriate for speaking to potential donors. A "real person''s story" speaks to people's emotions and gets results. We've done this several times for the Alz Assn, at fundraisers, with their big donors. We chatted for a while and I told her we'd be happy to speak to anyone they want. They are trying to get funding for a family caregiver training program--and I'm all for that!