Members of the Democrats.community welcomed guest speaker, Nick Dupree, in an online chat March 14. Nick is an exceptional young man who is fighting not only for his own life, but also for the lives of others, in trying to persuade the Alabama legislature to extend Medicaid's home health coverage past the age of 21. As a result of Nick's extraordinary efforts, the Nick Dupree Adult Care Act, SB113, has been introduced into the Alabama legislature. Nick has also joined the fight for passage of federal legislation, S1298 (also known as MiCASSA), which would make home health care mandatory for states, under federal guidelines. Members discussed the life and death struggles Nick and others in his situation face, and what can be done to help save lives, by getting these bills enacted into law.
Democrats.com Chat with NicksCrusade Founder Nick Dupree Reveals the Courage and Determination
Moderated and transcribed by Connie Robertson
Members of the Democrats.community welcomed guest speaker, Nick Dupree, in an online chat March 14. Nick is an exceptional young man who is fighting not only for his own life, but also for the lives of others, in trying to persuade the Alabama legislature to extend Medicaid’s home health coverage past the age of 21. As a result of Nick's extraordinary efforts, the Nick Dupree Adult Care Act, SB113, has been introduced into the Alabama legislature. Nick has also joined the fight for passage of federal legislation, S1298 (also known as MiCASSA), which would make home health care mandatory for states, under federal guidelines. Members discussed the life and death struggles Nick and others in his situation face, and what can be done to help save lives, by getting these bills enacted into law.
[Necco27] Welcome everyone! I'm Necco27, the newest moderator at Democrats.com. This is my first experience at hosting a guest chat, and I'm grateful for the opportunity. I'd like to start out by thanking Bob and David, for their time and effort in offering us the Democrats.community. A big thank you to two special moderators who are helping me tonight, LoyalAmerican, and Conestoga11. I'd be lost without their guidance and help.
I'll start with the interview, and then the other moderators may want to take part in the interview session. Our speaker has the option to stay after, to answer open-session questions.
I'd like to introduce a very special person to you: He's a member of the Democrats.com community, and he's our guest speaker for this evening, Nick Dupree. Nick has spent the past year working hard on NicksCrusade, http://www.nickscrusade.com. Nick, thank you for being a guest speaker at Democrats.com.
[Necco27] I understand NicksCrusade recently observed its one-year anniversary. Congratulations! Can you start off by telling us about MiCASSA and why you're fighting to get it passed?
[NicksCrusade] I'm thrilled to have the opportunity to spread my message tonight, thank you moderators. Just a second.
Alabama doesn't have a program to provide continued long-term home care to people over 21, so once you hit 21, you're cut off in this and many other states. I've been attacking this problem on many fronts.
MiCASSA is federal legislation S. 1298 the Medicaid Community Attendant Services and Supports Act. It will make home care mandatory under Medicaid for states. Medicaid is a program administered almost solely by the states within certain guidelines. It receives federal and state dollars. Currently, home care is not mandatory under Medicaid but MiCASSA seeks to change that.
I also have legislation that I personally worked to get introduced in the Alabama state legislature: SB113, the Nick Dupree Adult Care Act. It is nothing like MiCASSA. The changes it makes are hardly sweeping, it just ends the 21 cut off and makes them extend it further.
[Necco27] There are 10.1 million Americans who need assistance with activities of daily living. Do you have any numbers on how many disabled citizens of Alabama are adversely affected by the cut off age for home health care?
[NicksCrusade] I only have my own unconfirmed estimates on how many are effected by the cut off. Most Alabamians who need assistance with activities of daily living are already over 21 so they aren't affected by SB113. There are about 50 people who face cutoff in my town, Mobile, so I estimate there are about 200 people who will be helped by my bill in all of Alabama, but 200, 10, 1, whatever, no one should be cutoff and imprisoned in an institution just because they turned one day older. As John F. Kennedy said in West Berlin, "freedom is indivisible, and when ONE MAN is enslaved, all are not free."
[Necco27] I understand New Hampshire is one of a handful of states with model home care systems, can you tell us about their success and what it means for your PR efforts?
[NicksCrusade] NH is a state that has implemented a MiCASSA-type system. The April report in US News and World Report that by implementing the system, NH saved 15% in Medicaid costs really helps the case for MiCASSA and because of this, some fiscal conservatives have supported it. So what NH has done really helps MiCASSA in Washington, however, they couldn't care less in Montgomery, AL.
[Necco27] Has the opposition responded to the success of the NH program or have they tried to avoid addressing it?
[NicksCrusade] They've tried to refute it and are looking for new studies to offer a conflicting view. A few months ago VOR posted a request for studies proving that institutional care is cheaper, so it's still being challenged. All costs depend on the state and the institutional system that they have, so you can basically prove either side with hard numbers.
[Necco27] I understand that VOR (Voice of the Retarded) is one of your biggest opponents in NicksCrusade. They are a group of parents who have chosen institutionalization. Why do these people oppose you?
[NicksCrusade] Well, they don't oppose me directly and they never actually addressed my Crusade, but they've been the strongest opponents of MiCASSA that I've seen.
[Necco27] Why would they oppose MiCASSA?
[NicksCrusade] MiCASSA would take the money Medicaid would use to institutionalize me and use it for home care. VOR sees MiCASSA as a threat to the status quo (it is) and they oppose it. I do not support institutions and I feel it's about time the status quo to be challenged, it's about time we fund home care the same as abusive snake pit nursing homes. Of course they have a very different view and they're a very strong lobbying force and remain the biggest threat to the passage of MiCASSA.
[Necco27] Tell us more about the role the nursing home industry has played in blocking MiCASSA. Do you think VOR receives funding from them?
[NicksCrusade] Well, obviously the nursing home industry will oppose anything threatening their meal ticket; their ability to keep a lot of people with disabilities locked up so they can suck money off them and suck their life force out and keep them unaware that there's anything better out there (it's a lot like the film 'The Matrix') so they have really made an incredible effort to block MiCASSA using the current campaign finance system (legalized bribery) and their bi-partisan effort has been very successful. Because MiCASSA has never passed a committee or made it to the floor. Since the nursing home industry and VOR have a common cause in blocking MiCASSA, I'm sure that they've supported one another as all of the interested parties would.
[Necco27] Would MiCASSA force home care on those who don't want it?
[Necco27] Medicaid observed the original cost of the coverage on your bill as being around $24 million, now they say it would cost $80 million. Have you had access to the numbers so you can crunch them? If not, why not?
[NicksCrusade] The numbers Alabama Medicaid is currently throwing out are ludicrous. I don't trust their figures. Since they oppose the bill, their accounting is hardly impartial. $23 million, $80 million, I believe neither are true since my care will not cost a dime more the day before I turn 21 than the day after.
My bill's sponsor, state Senator George Callahan is trying to get good, independent numbers that help us and that we can take to Montgomery and convince people with. We don't have these numbers yet, but should soon. Once we get these new numbers I will launch the largest lobbying effort for SB113 yet, possibly even going back to Montgomery.
And to answer the question, no, AL Medicaid has never provided the sources of their numbers and are letting no one look at their books. Why? Harder question. I don't know. Probably because if all the numbers were exposed, it would undermine their opposition on the bill. Being in the situation where the opponent of the bill controls the numbers is bad, but I hope to get new numbers soon.
[Necco27] Regarding Olmstead v L. C., (information about this case can be found on Nick’s site) specifically the qualification of people with disabilities, regardless of age, how is Medicaid getting by with the cutoff age, anyway?
[NicksCrusade] Difficult question. Kind of like "How did Alabama get away with not integrating for nearly 20 years?" I don't know, but many states are getting away with it, from Texas to Virginia and there aren't that many me’s around to challenge them..
[Necco27] DemYankee asks: I've heard home health care can actually save the state money. What are your thoughts on this?
[NicksCrusade] It's proven that it can, such as the April 2001 U.S. News and World Report that reported that New Hampshire had saved 15% of their Medicaid budget by switching to a MiCASSA-like system. I think that the savings of the money can really help with PR and bringing moderates and conservatives over to our side.
[NicksCrusade] But also, I don't care how much it costs. You can't put a price on human freedom so I really prefer framing the home care debate in terms of life versus death and freedom versus imprisonment rather than the budget projections and dollars and cents and red and black ink that many bureaucrats only think in terms of.
[NicksCrusade] If it's an argument with a strict fiscal conservative, then you can save a fortune by just letting people die without care (and many states do this) so that's why I like to avoid the cost arguments because if you want to save the maximum amount of money, I'd be dead!//
[Necco27] DemYankee asks: Can you get the AL Medicaid books opened under the Freedom of Information Act or Sunshine Laws?
[NicksCrusade] Wow, that's a great idea! I'll pass that idea along to Bruce at the TV station and we'll see what we can do. Thanks DY!!!
[Necco27] What can we do to help NicksCrusade?
[NicksCrusade] Since most of you don't live in Alabama, I'm not completely sure, but you can support MiCASSA by writing, calling and annoying your elected officials, especially Tom Daschle, since he controls the calendar. I mean your U.S. officials and by writing national media and telling them about my site and this horrible situation which needs to be exposed nationally. But beyond my Crusade, I'd like to encourage other people to start their own crusades. I'll even share the three-part strategy: 1. Identify the problem and have the will to work every day to address it. 2. Reaching out to people about your problem, building relationships, building coalitions. 3. Alerting the media and spreading the message through them.
[Necco27] Nick, thank you so much for being our guest speaker. You are truly an exceptional person. The time has really flown by! Would you be kind enough to stay for an open-session chat so email questions may be submitted and so our members can ask you direct questions? We'd like to include those questions in the transcript.
[Conestoga11] Thanks, Nick!
[NicksCrusade] Thanks! Glad for the opportunity to be guest speaker...sure I'll do open chat!
[LoyalAmerican] Interesting stuff, Nick!
[NicksCrusade] Glad to, and would like to do it again sometime!
[Bob] Nick, do you have contact with other folks who are in your situation? I mean Alabama in particular.
[Bob] You shouldn’t have to wage this battle alone, it seems to me…
[NicksCrusade] Bob: no one in my situation that I’ve ever met so far is fighting this battle or wants to. There is no one like me in Alabama that I know of, who has the will, resources, or anything that’s needed to wage this kind of battle, so for now, I do fight alone. I hope you’ll invite me back to do this again one day.
[DemYankee] Nick, I understand your younger brother has the same problems as you do…are his as serious?
[NicksCrusade] Yes, DemYankee, he’s about the same.
[DemYankee] Are your conditions genetic? I mean how likely is it for two in the same family to have MD? I always thought of Muscular Dystrophy as being a rare disease.
[NicksCrusade] Yeah, Dem, it’s genetic, not sure how likely it is since my kind of MD has yet to be identified in the 20 years I’ve been alive.
[arlene] Nick, perhaps you’ve already covered this, but can you tell us what your typical day is like? We think our days are so hard sometimes and we moan and groan. Perhaps if we knew what your day was like we would have more empathy for the problems you have to go through.
[NicksCrusade] A typical day? I can basically cover my typical day by saying that everything you guys do for yourselves and don’t think about, including turning yourself in your sleep, I have to have done by another person.
[arlene] Could you get a coalition of people who have MD to fight with you to form a lobby of sorts? That could be a strong lobby if you include senior citizens fighting to stay in their homes.
[phantom] Do you think you could get any of the others to at least speak out with you at times? Seems like they have just as much to lose.
[arlene] Can’t you get a senate hearing? I just saw Christopher Reeve speaking at a hearing about stem cell therapy. Would stem cell therapy help you at all?
[NicksCrusade] Yeah, Arlene, stem cell would help a whole lot if they could figure out how to regenerate muscle.
[DemYankee] Would your fight necessarily have to be limited to those with MD? Don’t these issues apply to everyone with chronic health conditions…whether they are MD, MS, diabetes, asthma, etc?
[NicksCrusade] No, I don’t limit the fight to people with MD. It’s for everyone who needs home care.
[DemYankee] Have you contacted Christopher Reeve? Hillary…Ted Kennedy? Well known people who work extensively with healthcare issues?
[NicksCrusade] I wrote to Kennedy and Hillary with no response—It’s because of the no non-constituent reply policy
[idabee] I am hearing on the news that drugstores are threatening to drop or end Medicaid. How will this affect you?
[NicksCrusade] Good question, Idabee; people should really be concerned about the Medicaid cuts for prescriptions. It won’t affect me, though. I only use Medicaid for home care, my mom’s private insurance covers medicines and all the rest. A lot of people are in the same boat as I am on this, since only 0.3% of private insurance covers long-term care and Medicaid has to deal with it.
[DemYankee] Have you thought about contacting Jerry Lewis? He’s getting up in age but he has the networking in place and the contacts. If you could contact him or his people…maybe they could help you get the word out NATIONALLY, even WORLDWIDE.
[NicksCrusade] MDA is about finding a cure; they really won’t advocate on matters other than that, and this has a lot of people with disabilities angry with MDA.
[arlene] What about your own senator? Who is he? It’s not Sessions, is it?
[NicksCrusade] I just got word that Sessions’ people are working with the feds to get a waiver for my SB113.
[Necco27] I don’t understand waivers.
[arlene] Waivers can be good, or bad.
[NicksCrusade] No, he’s not against me. He supports SB113 and is really trying to help us get it through on the state level.
[arlene] Well, that’s good. Maybe he could get you to Washington, then.
[DemYankee] Nick: try to get celebrity support. If you could get the attention of say, Reeve, Oprah, or even a spot on the Today Show with Katie Couric it would being your Crusade to the forefront of the nation…it would give Twiggie nightmares…(hehe)
[arlene] What would be the worst case scenario for you Nick?
[NicksCrusade] That’s why I’m so motivated. I do so much, because your own death is a really good motivator.
[arlene] So how does someone like Reeve or Hawkings stay alive, then?
[DemYankee] Reeve has money. They aren’t exactly paupers.
[arlene] So what you’re saying is if you have money…you can live.
[DemYankee] It’s the American way, Arlene.
[NicksCrusade] Hawkings is in the UK, where they have Universal Health Care. Steven Hawkings is British.
[arlene] So the only way for Nick to live is through National Health Insurance?
[NicksCrusade] Not exactly. MiCASSA wouldn’t do it with Universal Health Care, it would just reform the current system. Massachusetts, Vermont, and NH have already implemented MiCASSA-type systems and the rest of the country can follow suit. Without the UHC, that is.
[DemYankee] What exactly is MiCASSA? What does it mean?
[NicksCrusade] No, MiCASSA would do it without sweeping Universal Health Care or Constitutional amendment. Several states have already fixed this problem and the rest of the nation can do it, too.
[arlene] Nick if you have to get to DC, could you go?
[NicksCrusade] It would be really hard for me to go to DC, but I could do it. I’d have to either go by our van or in a private plane, or something. I’m not sure how it’d work.
[Necco27] Nick: Tell us about your online petition!
[NicksCrusade] well…it has 1797 signatures. I just want to get as many as possible and then send it to my legislators if MiCASSA ever gets to a vote.
[Necco27] It’s a petition for MiCASSA, right?
[NicksCrusade] Yes, it’s a petition for MiCASSA.
[arlene] Then, aren’t they the people to contact to get you to DC? Nick, it would seem as if you would have a good chance. They let a lot of people testify before the senate for problems not as important as yours.
[NicksCrusade] Arlene, if MiCASSA ever gets a hearing, I’d like to go testify.
Thanks to Nick for sharing his story with us. We also hope to see him in Washington someday. If you haven’t sign Nick’s petition yet, please do so and pass it on to your friends and families!
Nick can be contacted via e-mail at NickSD@aol.com,
his website http://www.nickscrusade.com, and at the NicksCrusade forum at Democrats.com http://community.democrats.com/forums/topics.cfm?forumid=86
Membership sign up for Democrats.com is here: http://www.community.democrats.com/login.cfm