Annual EMSC Grantee Meeting

Family Representatives

Family Disaster Planning

June 20 – 22, 2006

JOHN SUSA: What I'm going to talk about is really about a meeting that she and I and Lawrence, who is up here, who didn't realize he was going to be part of the presentation, the three of us are from Rhode Island, and by some magical process, all three of us were invited to attend a consensus conference that was scheduled for last August. And the consensus conference was ‑‑ I'll stand here ‑‑ was sponsored by the Mailman's School of Public Health Center for National Disaster Preparedness. It was scheduled for August, as I said, and naturally when the Hurricane Katrina and Rita struck it disrupted the schedule, and the conference was put off until December. And the purpose of the conference was to bring together probably about 100 people who were interested and informed about EMSC and emergency preparedness issues, as well as emergency preparedness issues for adults with disabilities.

Connie and I were invited to attend I guess in part because we're kind of family representatives who kind of bridge theEMSC and the adult disability world. You can imagine how much had already been learned by December by what had happened in the south. And a lot of that new knowledge was really infused into the meeting. In fact, there was so much knowledge that when we left the conference, I'm ashamed to admit how many conferences I've attended in my life, how much federal dollars have been consumed by my traveling. But it's a lot. But when I left that conference, I had two notebooks full like this.

UNKNOWN SPEAKER: The other was twice that.

JOHN SUSA: The other was twice this size. Almost none of us who left the conference carried away the manuals. They were all Fed Ex'd. Probably doubled the price of the conference just for distribution of material.

But it was really worthwhile, and Connie and I have felt we would give you a very brief synopsis of some really important components of that conference, and actually somebody asked the question, I know the answer. As a result of the conference and as a result of some federal intervention, CMS, the people who do the Medicare and Medicaid, they are going to change their rules to allow people who are on getting their medications through Medicare and Medicaid to get an additional medication supply beyond their 30 days. And they figure that since Medicaid and Medicare pays for so much of this stuff, all the rest of the drug programs will follow through. And so it won't be long before people will actually be able to get the ability to stockpile their medications.

That was one of the recommendations that came out of this conference that I know is actually being implemented.

So the conference was there to bring together people to talk about the issues that are particularly unique to children in emergency situations. You I think know all that stuff pretty well. I'm not really going to cover it in any detail, only to say that I really came away with appreciation for the impact of family leaders who have been working with Maternal Child Health Bureau and the folks at DHS in inculcating and emphasizing family participation and family centeredness in approaches to dealing with EMSC and other emergency situations. And that came through very clearly to me when I attended a session where the discussion was around emergency response plans for schools.

There, of course, has been a lot of discussion about how those plans ought to be put together. And the discussion at the work group that I participated in was a little bit polarized. And the polarization was those of us who were family members, who had children still in the schools, people who were very aware of the importance of family center approaches, were surprised to hear that the Department of Education's general policy about emergency preparedness in the schools

was school people, cool administrators and personnel would put together the plan and share it with parents and let them know about it. And you can imagine those of you who are kind of like much more oriented towards the family centered partnership approach we were a little bit surprised that they thought that was the way to go. We had to EMS a better way to go was to bring in families or parents into the planning process and to make sure that everyone has had their chance to have their input. Because the general plan, if you don't know it, you should check it in your own community but the general plan is if there's a serious emergency, children will be kept in school. And parents will be told not to come for them.

Now, I don't know how many parents are going to do that, to be honest with you. And I think that there's a major flaw in that kind of thinking, and it came from the fact that they didn't involve parents in the process. That aside, I think the rest of the conference was a really good example of how people who are running the conference were trying really hard to get input from end users. Families, people with disabilities, in what they were thinking about doing for emergency preparedness.

The purpose of the conference was to fill in gaps to check in with people to make sure that the way they were moving in terms of policy development was consistent with the way people were thinking, and also to look at what we had learned from, not we, but what they had learned from Katrina and the emergency responses that had gone into that and to see if it's necessary for us to maybe fine tune some of our thinking.

And the number one point that came out of it, Connie will talk about it more, but the number one point that came out of it, Dr. Pile said it, if everyone had only been a Boy Scout or a Girl Scout in their lifetime, things might have turned out a little bit better. Because ultimately the message is it's individual emergency preparedness that has to be the foundation of any kind of community or national response.

It's obvious from that meeting that there are disasters that far exceed our national ability to respond quickly, and that there's a need for everybody to be personally responsible for themselves for a while until the help shows up. And Connie has an activity that we want to do to kind of EMS some of the dilemmas that I think anyone who is involved in emergency preparedness planning and implementation in a way has to face. So, Connie, why don't you come up and tell us a little bit about that and we'll break you up into looks like maybe four groups and have you spend about five or so minutes on this activity. And I'll pass it around.

CONNIE SUSA: You may wonder what this has to do with the policy recommendation conference. But we will connect the dots after you do this.

What John is distributing is an activity called the attack. And because not all of you have it, I will read this. International doom day cult releases poisonous gas into the world's atmosphere. They want to bring about the end of the world. There's been some warning about this, and so there's been some preparation for this possibility here, with the establishment of shelters in every state. No one knows if shelters will work. And we're from Rhode Island, so you are the Rhode Island

Shelter Administrative Council. The gas has been released. It is on its way. It will persist, we have just found out, twice as long as originally thought.

The shelter has food and water for 11 people for two weeks, but you now have five minutes, not 25 minutes, to select the six survivors who will have to stay in the shelter for 30 days. The original group of 11 chosen by the government through a process you know nothing about is at the gate to take in all 11 would mean that no one would survive. These people may be the only survivors of this attack in the whole world. They may be the ones who will start repopulating the world, establishing what the future human population of the world will be like. They cannot decide among themselves who will go to the shelter, and incidentally, you are not allowed to go into the shelter. They agree to let the council decide based on the small amount of information they provided on a card that they filled out to describe themselves to the council.

Remember, these people may be the future of the world. You have five minutes before the gas gets here. I'm timing you.

UNKNOWN SPEAKER: Each group has one (inaudible) you may want to work together.

CONNIE SUSA: Because they have so little time.