Public Health, Welfare and Labor Committee - Senate

Okay there is only one Speaker I can pull my last call. Okay leased or. Hello my name is Dave I got motivate downs and. I have a down think everybody should be able to not have to label people and also on the bill I'll talk about. Yeah and yeah yeah if you don't have to the bill yeah I liked held under the Sikh community and everybody else we're not words that. See you know I'm trying. And also I want to say that is that whenever Yeah which is to the side we can't get the job but it shall happen service we should be able to cover images you like our. This bill the eight that by a calls on I'm consider high function. Al route you know but anyway look my my purpose here is to is to They all know. The alternate. Call this call you also need to get it we can get a severity auction judges. Our. Put it put it that but in the down on certain levels you know because all all of the is fable we're green. But. mainly just wanted. Thank on that part and also I want to take a job or let me come up here and speak. And I'm trying. But. Thank you to pass the bill because everybody you know how we. Accomplish our problems and all of the time that's not fix the issue I don't have the issue when I was younger. Now that I've gotten older. Ages to get orders I have two years off or like in my mind of my face my legs my own nerves coordination and my body part five hundred Bucks start to break down let's say I need a heart transplant or something like that. Don't tell me I can have one it's called I got down syndrome. I don't think nobody has that right to say especially yes or anybody. But anyway I thank you for your house okay all right well Mister Dixon we are delighted to have you here we thank you for coming and it is an honor to hear from you and I want you to know that you've spoken truth today and the we appreciate it very much so I hope you'll come back another time thank you early in the year. The when you come back another day and to where they to go again thank my thank you I think we need to give him a hand for. Thank you so much we're moving right along the list seed senator do you would you like for miss Morrow to speak before your bill you wanted to go after. All right all right we're going to hear from Senator Davis and we are going to hear on Senate bill one fifty five. And you're recognized. Thank you madam chair and members of the committee. This bill is wireless lan and. I can't get my can you hear me OK thank you and. It is very important bill for several reasons very personal to me and Lanny Martin who will can speak and share her story and just a few minutes has been working on this for several years now before I even came to the Senate and trying to get somebody to advocate on behalf of those with disabilities. And. So I'm honored to be reading this bill and and the reason I was not emotional but just the personal nature of it I apologize. And this bill is needed for a couple of reasons the talking points on all of your and and all of your places and. Isn't is that the most common and reason that people are denied an organ transplant and people have a disability is just the misconception that people with disabilities are not able to comply with complex post operative care and sell a lot of times doctors will only take into account if that person alone can handle and the post op care and not take into account the support system that they may have at home and the other reason is that honestly provider sometimes incorrectly assume and what quality of life means to those who have a disability. So they may think that they have a lower quality of life or that they don't contribute to society in the same ways these are some old fashioned views about people with disabilities that we know and are not treat. The reason we need this bill is currently there's a narrow and speedy legal path for people with disabilities have been denied an organ transplant to be able to appeal that decision if they feel they were denied based on a disability eleven. So what this bill does and I believe it's quite simple in nature even though it several pages but what it does is that prohibits and doctors are providers or insurance agents from doing insurance companies from doing the following based on somebody's mental or physical disability when it prohibits them from doing them in an eligible for a transplant denying any services related to the transplant refusing to refer them to a transplant center for evaluation which so often happens and they're not even referred in the first place to have an evaluation to know if they're eligible for an organ transplant. And prohibits them from refusing to place them on a waiting list or placing them at a lower priority on that list and also prohibits and then from declining insurance coverage for the procedure. It also requires reasonable modifications. For the qualifying patient unless the hospital and a provider can show that it would create some sort of an undue burden or fundamentally alter the nature of the services provided. And this allows a qualified individuals disability to be taken into account when making treatment coverage recommendations and once the doctor does some type of evaluation and and finds that is the. I'm sorry but it and. Allows a qualified individuals disability be taken into account when making treatment coverage recommendations once the doctors conducted an evaluation and find the disability T. medically significant so what that means is and if they need to make accommodations whether it's your and I stop your support your family and or in explaining the information to you are providing and some type of and pre organ transplant counseling they need to put it in terms make reasonable modifications for you with your disability that's when they can take the disability into account. And and as I mentioned it provides a speedy legal path for those who say that they have been denied a disability denied a transplant based on the disability land. To be clear what this bill does not do is require a referral or recommendation for a transplant that is inappropriate so. In order to be a qualified applicant and qualified recipient you have to meet all the essential eligibility requirements of everybody else and you just cannot be denied on your disability eleven fifteen other states have passed laws like this and it should is covered under that Americans with disabilities act and but often times organ transplants are counted and doctors do not believe that it's covered under eighty eight so this will just clarify and and make it stronger at a state level and there's also currently federal legislation to do the same to just clarify this process and that you cannot be discriminated against and if you have a disability. And I will take questions at this time or if we want to let miss Morrow can speak. Questions from the committee. All right seeing none we have some people here that would like to speak for the bill of. First I'd like to ask Elaine Morrow to come to the microphone please state your name. And that you're speaking on the bill. Hi everyone my name is lady Morrow Elaine's my legal name. otherwise known as Lila's mom that's my best alias Lila was born with two holes in her heart of they worked all together concerning at the time until as babies do she grew and they found a new one that they had never ever seen before and so they were not prepared for how to respond they knew surgery was needed but they didn't know what they're going to do they didn't know what she was going to need and they told us that without treatment her lungs would have turned basically into stone and she would slowly suffocate so there was no alternative. And in the same two sentences the doctor said. That a transplant would not be an option for her which the first news was terrifying in itself but to find out that our options were limited was even worse. I will say that at the time we lived in Oklahoma City. and this happened there. But then we moved home and I found out that other families here we're experiencing the same thing. And why I love it was fourteen months old at the time she's now seven every time we go for cardiologists appointment I pray we will not hear that she has had another hole in her heart because I don't ever want to hear those words again and I don't want anyone in the state of Arkansas with a disability to ever hear those words again. I love this bill I think that not only does it. Provide that protection of at least being considered because we were told this by a provider she was never sent for any consideration whatsoever so it stopped before it gets started and I believe that happens a lot. But at the same time I love how it sets people with disabilities up to be empowered to have the supports they need to make decisions about their care and to be able to provide care for themselves after a surgery while let it's a healthy person this was her only issue. And she has a great support system in place I think that she would what it least have been considered. Some people argue that like Senator Davis said while it doesn't have a quality of life and she doesn't have it in expectation of living a long fulfilled life. But in my opinion wireless life isn't much different another seven year olds. She loves to eat blackberries off the vine she likes to swing she's super sassy. She's like lots of other seven year olds and I believe that she deserves that consideration and I am ever thankful that she did make it through the surgery and it wasn't without its complications I mean she it was hard and sitting in that room for seven and a half hours praying that what they did would work was excruciating. This isn't new. And within my lifetime people with down syndrome have been starved because. Eating them was considered a life saving treatment. People have been denied life saving surgeries like the heart surgery she got and I believe this is just another step in the right direction I think one of the biggest challenges people with disabilities face are the stereotypes and assumptions people hold and this bill will clarify it will be an empowerment to families who go into provider's office do you have something to say in the opposition hi we were flabbergasted we had no. Options there was no time for any sort of work reaction and that situation and that's another thing I love about this bill it helps people to be able to. Try to do something about it. Right I thank you so much for your time and thank you so much for your support and I really appreciate that as an Arkansas citizen this issue is being heard all right ladies and gentlemen if you have questions. All right single questions thank you so very much and ladies and gentleman in the help committee we ask for those who want to speak for the bill then we go to anyone that would like to speak against it so is there anyone in the audience that would like to speak against it all right now next to speak for it is Kathy. What is the last name I am having trouble reading this sub. Okay come to take. If you would to state your name please for the record and you're recognized to speak for the bill. Hi my name is Katie Sir Sir So I am the president of the down syndrome advancement coalition which is a coalition of eight different nonprofits ranging from the nonprofits that provide direct familial support to providing support to providers to providing support to schools servicing the down syndrome community I'm also the site director of Gigi's Playhouse which is a down syndrome advancement Down syndrome achievement center right here in Little Rock and we provide free tutoring and life skills to people with disabilities so I'm very familiar with the down syndrome community with the autism community and I have strong ties all over the state and so in researching and listening to this bill and listening to my friend's Lanny and brand sorry Senator Davis Listening listening to them formulating this bill in planning it I have been kind of putting my little feelers out in the community and saying you know what are your concerns what it what do you want in this bill what do you want to be represented how do you want to be represented and I think they have captured the essence of exactly the fears of the people that have disabilities in Arkansas and they have brought the strongest weapon against that in this bill and I and I say that to say that this is a comprehensive plan that looks at all angles it appreciates the perspective of providers not being pressured into anything it also appreciates the per the perspective of families that need representation and need to feel like they're heard and personally I can speak my daughter is the little one back here and she has a little short on says wireless BFF she is wireless best friend her name is Emma and when and I was born and I was told a very similar story like you heard from miss Morrow she was born with three holes in her heart and and and have very complicated call an issue and the holes were not the problem we had a twelve hour open heart surgery and that was fixed but we have been told by several and still to this day have been told by several providers that she wouldn't qualify for a transplant of her coal and simply based on the fact of the that care system and I. I challenge anyone who doesn't have a child with down syndrome to look at a child a family with a person with down syndrome and just see how much harder that they do work on a daily basis to get them to therapy in schools and the extra tutoring and extra things there is there is no support system better and then I have a family with a child with disabilities I think I think they already understand what support system means walking into it where is other organ transplant victims or survivors need to develop that support system people with disabilities already have that so it seems natural that that they would automatically be considered not automatically be counted out and that's all that this bill is is don't count them out don't write them off and and it's not it's not you know because I I've spoken directly with units I mean personally I spied called Unisys selection committee and spoken with them and it's not them they have no rules that say you can't have a transplant based on the disability that's not and that's not even a button that they can click like it's not there but the people that need those transplants can't get past the preliminary providers and hospitals and doctors to get to that point because of the discrimination against them because of the automatic assumption that oh well this is this is how life is and it's just not so I appreciate you guys meeting and considering this and I really appreciate you taking the time to write it and all of the people that have helped you because there are thousands of our Kansans that will be affected by this whether they know it or not and it's going to really impact people. All right well thank you committee do you have questions. All right senator hammer you're recognized the committee chair and this would be directed towards Senator Davis at the appropriate time please all right. Sir Davis all about the bill I just want to ask one question on page six. It is directing that the court shall. somewhere near Salt it. The court shall. Take a case of. Did you get any pushback from. Any of the court systems about dictating to the court that they shall do something I have not. Okay and is this language strong enough and I presume that the reason this is in there is given the nature of the situation and if a if the transplant is needed you would wanted to move to the head of the court docket and I just want to know is this language strong enough that it will get that done if that's the intended purpose yes actually I believe that it addresses and. I believe it addresses and if it's them a medical emergency moving on it and more quickly in a different part of the bill. I'm just which I have to find that yes okay and I'm all about I just wanna make sure that there's not a wiggle room down the road if this bill is working its way through to get make sure that doors totally open so okay thank hello there Fite yes. all right to if no other questions for a witness we thank you for coming in we were going to have to ask Is there anyone in the committee would like to speak against this bill all right seeing none we are going to Thomas Nicholas who is the legal director for the disability rights in Arkansas if you would state your name for the record please. Thomas Nichols disability rights Arkansas okay you're recognized. Thank you to the committee for hearings worthwhile bill. We're the state's federally mandated protection and advocacy system for the state of Arkansas we provide free legal services for individuals with disabilities all across the state. so we're intimately familiar with the Americans with disabilities act. The eighty eight was designed to ensure that individuals with disabilities will not be discriminated against for reasons of their disability. Individuals with disabilities should be entitled to the same services in places as any other individual. And should be reasonably accommodated if those accommodations are necessary to provide them with that access. An individual's needs and abilities should be evaluated on an individualized basis before services are denied. This bill seeks to codify these principles that exist in the ADA but are extremely hard time consuming and costly to enforce. Any time the state legislature wishes to endorse from qualifying and clarify a provision of the ADA in application. Increase it increases the chance for individuals with disabilities to achieve equity. And it also provides greater predictability in the mall. Federal enforcement of disability rights laws are not always available they are not always predictable and they greatly depend on the resources and priorities of the agency that you charge with enforcement of it. Then finally supporting the rights of individuals to participate in decision making for life altering reasons. That really champions the idea of a person with a disability as having person so I thank you for considering this bill all right any questions from the committee. All right sing none thank you so very much. Senator Davis. Are you close for your bill. Yes I like to say one thing. That everyone on this committee is and very pro life and I appreciate you guys taking the time to listen to the testimonies of people who have been impacted by discrimination in our state in other states and and you know we grapple with a lot of pro life issues throughout session every two years and this is and certainly one of the most pro life bills that I've seen and grateful to be part of it and and grateful to have your support thank you Committee all right to these internal and you've heard the testimony you've heard the witnesses and what is the pleasure of the Committee I happened to pass in the second all those in favor say aye. All those opposed your bill has passed unanimously. Ladies and gentlemen there is nothing left on the calendar the tenderizer but I have a list of bills that are ready but somebody has to talk with me about them before we put them on the agenda so you might check your list and see if you have any that. Eighty four of us to The manager of whatever. In the get with me this part of our new rules and so Monday we're going to have a lot I'm going to have some I believe senator hammer will have some that look at your list of the bills that you want to be in the committee and see if they're ready and they are please notify me will get him on the agenda and that's it and we are adjourned. Okay do I do I have to go.