House Aging Children and Youth Legislative & Military Affairs
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Chair
Unverified
0:00
item. Y'all should have received a little slip of paper here. It says, I love my library. Today is library day at the legislature, and they'll be on the second floor from 8 a.m. until noon, so hopefully we'll get done with comedian time. You can go up there and, looks like, have some cookies and speak with some local library folks. All right.
All right, another thing is when you leave do not turn off your tablets Apparently that creates some sort of problem. So just keep them on and staff will properly Shut them down and do whatever they need to do First item is House Bill 1029 representative alts. I do not see him here present So we're going to go ahead and skip over that. I think that's the third time so it will move to the deferred list All right next one is going to be House Resolution 1005 by Representative Steele
Representative Steele, you're recognized to present
Representative Nate Steel
Unverified
1:10
your resolution. Thank you very much,
Mr. Chairman. It's a pleasure to be in your committee. Members, I'm here today on House Resolution, if I could find it on my tab here. House Resolution 1005. This is a resolution that I'm asking the General Assembly or the House to resolve that March
of this year be declared Awareness Month for a really rare disease known as multi-symptom atrophy. This came to my attention from a constituent from Delight, Arkansas. She contacted me about this matter. Her husband of 37 years has been diagnosed with this rare neurodegenerative disease. caused her and her family a great bill of a great bit of grief and and obviously he's had to undergo a lot of procedures and her concern was basically that it
was so rare they'd never heard of it before he was diagnosed with it and I think that's I'd never heard of it until I received her email so she mentioned that other states and she sent me an Ohio statute had declared certain months as awareness month for this particular disease so that more folks would be aware that this disease is out there and possibly help eventually eventually hope attract some attention and resources in the future but all this particular resolution is is is to declare month March the month to to
recognize this awareness month for this disease I'm going to ask if this bill passes that my constituent be here Friday when we presented on the floor I don't believe her husband would be able to make it because it's taken such a toll on him that he can't he can't get to Little Rock but but she and her children and grandchildren would be there, and they'd be honored if we could make this declaration and recognize her on that day. So I'd appreciate a good vote, and I'd be happy to answer any questions. Any questions or comments? Representative Feight, you're recognized.
Representative Charlene Fite
Unverified
3:04
Thank you, Mr. Chairman. Representative Steele, how many people a year have this disease? You may have said, but I missed that number. I
Representative Nate Steel
Unverified
3:11
believe it's in the resolution. If I could pull it up here. actually it's not in my resolution I believe it was in the Ohio resolution and I can pull it up I can't remember what the rules are mr. chairman if I'm entitled to use my cell phone down here at this end of the table I'm going to try to answer that for miss fight
Representative Charlene Fite
Unverified
3:38
it wouldn't make any difference really am I passing it I was just curious
Representative Nate Steel
Unverified
3:43
it's a it's a good question and I this is the only case that I'm aware of in Arkansas I'm sure there or others, one of the concerns that my constituent had is that it's such a rare disorder that it's not covered by most insurance plans or Medicare. Obviously she asked me if there was anything we could do about that legislatively, I told her no, but at least not at this stage, but the best thing we could do is start raising awareness so that maybe there will be some resources in the future. I think the best thing we could do right now is raise awareness, and it is very rare.
As I mentioned, the resolution that I have modeled this off of came from an Ohio resolution and I believe in that resolution they did mention how many citizens in Ohio had the disease, but I can't give you
Chair
Unverified
4:27
that number for Arkansas. I'm sorry.
Representative John Payton
Unverified
4:33
All right. Representative Payton, you're recognized. Thank you, Mr. Chair. Representative Steele, it doesn't specify whether you're talking about this March or every March in your resolution.
Representative Nate Steel
Unverified
4:42
I believe our resolutions are only good for one year, so I would prefer every March, But my understanding of the house rules is these resolutions are only good for the year that we enact them So if if necessary, I may run the same resolution next next biennium. Okay. Thank you All right, representative Defenbaugh you're recognized
Representative Gary Deffenbaugh
Unverified
5:03
Thank you, mr. Chair This is just kind of for my own information. Is there any anything else we observe in March? Is there other other other things we do? I believe there are that's a good question
Representative Nate Steel
Unverified
5:15
I think that there are several months dedicated to awareness for particular diseases. I think it's most of the awareness months that we have are diseases that are commonly known. I think that this one is unique because it's a disease that's not commonly known. So what I'm hoping is that the resolution itself will provide a little bit of publicity, but there's no formal – we'll see what we can do if the resolution passes, but it It won't step on the toes of
any other awareness that may take place in March or any other month for that matter.
Chair
Unverified
5:52
Okay. Anybody other? Representative Julian, you're recognized? Yeah.
Representative Patti Julian
Unverified
5:56
I had never heard of this disease until during the election cycle two years ago when one of our Pulaski County judicial candidates began to suffer all kinds of odd little things during the course of the campaign. and shortly after the campaign in which she was elected as a juvenile judge, she was diagnosed with this condition.
She never got to sit on the bench. So it can strike and strike swiftly. And I hate to say that she died a horrible death over the next year. and just other than trying to manage the symptoms absolutely nothing that they can do for them and so for those of us who were friends of hers and supporters of hers
I'd like to see this resolution adopted If I might, Representative Julian
Representative Nate Steel
Unverified
6:57
I believe you're referring to Judge Melinda Gilbert and she was a very close family friend she's from my district, from Derricks, Arkansas and that's correct she was that
this is her her symptoms were quite a bit different than the symptoms that my current constituent has but and I'm not sure I realized that that they were part of the same disorder but I think that's that's absolutely right and I'll make sure that her should this resolution be passed
I'll make sure her family is aware that that we're doing this thank you for
Chair
Unverified
7:25
bringing that up any other comments questions what's the pleasure of the committee representative Alexander you recognized I move we do pass Okay. Any discussion on the motion? Seeing none, all those in favor of passing House Resolution 1005, say aye. Aye. Any opposed? Congratulations, Representative Steele. You've passed your resolution. Thank you, Mr. Chairman, and thank you, Committee, for great questions. I really appreciate your vote. Okay, next on the agenda, House Bill 1013 by Representative Edwards.
He's made the bill better and has come back before us. Representative Edwards,
Speaker 27
8:11
you are recognized to present your bill.
Representative John Charles Edwards
Unverified
8:16
Thank you, Mr. Chairman. This is an amendment that does two things. That adds Senator Sanders to the bill, and it also adds the State Veterans Home Task Force to the entities that will have input into a site selection.
Senator and English and I, as we've developed this bill, we decided that working with the State Veterans Commission it would be appropriate to have the task force be involved with this so that's what the amendment to this bill does. Any questions about the amendment or the bill?
Chair
Unverified
8:57
Seeing none, what's the pleasure of the committee? Representative Payton, I'm sorry, you recognize? All right, motion's been
may do pass any discussion seeing none all those in favor say aye all those opposed congratulations representative Edwards you've passed your bill once again okay do not see senator Malik to present his bill so with that said we are done with our agenda appreciate it again don't forget to go up and see the librarians up there grab you a couple of cookies and with that said the House Aging Youth and Children, or is adjourned for the day?
Agenda
HR1005
HB1013
Documents
No documents posted.
Speakers
Chair
Unverified
Representative Nate Steel
Unverified
Representative Charlene Fite
Unverified
Representative John Payton
Unverified
Representative Gary Deffenbaugh
Unverified
Speaker 22
Representative Patti Julian
Unverified
Speaker 27
Representative John Charles Edwards
Unverified