March 11, 2026 · Health Committee · 13,994 words · 14 speakers · 125 segments
We started. Clerk, will you take the roll?
Chairman Huffman. Here.
Vice Chair Johnson. Here.
Ranking Member Liston. Senator Ingram.
Here.
Senator Manchester.
Senator Rogner. Here.
Senator Romanchuk. Here. I have a quorum. We'll continue as a committee. I'd ask the members to look at the minutes from the previous meeting and see if there's any additions or corrections. Seeing none, the minutes will stand as written. First up, first hearing, House Bill 479 regarding physician supervision of contrast administration for imaging.
Representative Schmidt. Thank you, Chairman. Thank you, Senator Johnson. Thank you, Ranking Member Ingram. Today, I stand before you providing sponsor testimony for House Bill 479, which updates Ohio law as it relates to the supervision of administering contrast media. Contrast media is what is used for certain images for CT scans and MRIs. The American College of Radiology updated their federal policies in February 2024, and the Ohio Radiological Society brought these updates to my attention. They assisted in helping to craft this bill, which will ensure that Ohioans are able to get the images they need and continue to do so in a safe manner. House Bill 479 will allow a radiologist assistant to administer the contrast under the remote supervision of a radiologist. It will allow a registered nurse, radiographer, radiation therapy technologist, and nuclear medicine technologist to administer contrast under direct or general supervision of a physician. As a matter of safety, whenever remote or general supervision is being provided, a qualified health care provider must be present at the location to assist with adverse reactions or events. and the supervisor must be available for consultation with the professional administering the contrast. A qualified provider must receive training and meet competency guidelines set by the institution for recognizing adverse events. They also must be able to recognize when medical intervention is required and consult with the supervising physician or radiologist within the appropriate time frame. LPNs maintain their ability to monitor for adverse reactions under direct or general supervision. The as-introduced version of the bill allowed them to administer contrast. However, that was changed after a discussion with the Board of Nursing. It was not within their scope of practice. House Bill 479 will help many Ohioans receive the necessary care they need for CT and MRI scans. It would be especially helpful in rural areas that continue to struggle to meet the various staffing needs. This legislation, while expanding the ability for certain professionals to practice with supervision, will allow more health centers to provide the care that is needed with the highest safety standards to keep Ohioans safe.
I appreciate your time and welcome any questions you might have Questions for the witness Senator Romanchuk Thank you Mr Chairman and Representative Good morning
I just want to be clear. At the beginning of your testimony, you said that this bill is a result of federal policy changes. Were there policy changes in the American College of Radiology in that association, or were these federal statute rules that changed that now is requiring this bill?
Through the Chair, Senator, my understanding is they were made at the federal level. I'm not sure whether we would actually have to do it because I don't know what the statute actually said. Sometimes it's a suggestion, sometimes it's a mandate, but quite frankly it makes sense, especially in rural settings where we don't have the abundance of positions that say you would have in Cincinnati or Columbus or Cleveland at a hospital.
Follow up? Sure. So the sentence reads to me like, because the association changed their policies, that's resulting in this bill, and I just wanted to make sure I understood that completely, and it wasn't a change made at the federal level that is requiring this of states to do so.
Well, thank you. Maybe I can help. My understanding is at the federal level, a contrast die with a CT or an MRI is about one in 30,000. And when these rules were made 20 or 30 years ago, it was higher and there was a lot more concern. And there was direct supervision. There had to be a doctor in the building. A lot of times it's not a radiologist. It's just a doctor. And so the feds changed, said, well, you don't need direct supervision, but you need indirect supervision where you have to be by phone or available. And so we're following what the feds have done and said, you don't have to have somebody in the building. You have to have somebody available, and your techs have to be educated.
Thank you, Chairman, for explaining it better than I. You are the physician.
Any other questions?
I will ask, and I told you last night I would ask you this, the bill says that the indirect supervision had to be by a radiologist. As a physician, the only physician in a freestanding emergency room, I was the guy, I was the physician. So why does it have to be a radiologist and not a physician?
Because it will continue to be in freestanding emergency rooms, in small hospitals at night when the emergency room doctor is the only one there in the middle of the night have the supervision because they're on site.
Thank you, Chairman.
I tried to research it as best as I could last night. What I will say is this. This bill is not meant to restrict in any way, shape, or form. Be happy for the change to just say by a remote physician, if that's all right with the radiologist society, but could not get clarification on why they wanted me to say remotely by a radiologist. So happy for this is why we have the legislative process. You look at a bill and you make it better. We'll look at it further.
So seeing no more questions, that will end the first hearing on House Bill 479. Next up, the second hearing on Senate Bill 154. The chair recognizes Senator Ingram for a motion.
Thank you so much.
Thank you It as hot in my room as it is in yours And any member if they feel okay to take their coat off and be a little not as warm So Senator Ingram
Thank you. Thank you, Mr. Chair. I'd like to make a motion to adopt Substitute Bill 0293-1.
The substitute bill is in order, if you can explain it.
This bill makes a couple of changes that were brought to our attention from various departments. First of which is it broadens the decision maker to, excuse me, I don't know if it's a heat or what, but the industry position is that a designated sponsor, which is in the original bill, was a little too broad, so we brought it down to the attorney, in fact, or the guardian. And so that language has been changed also. Of course, as you know, the purpose of the bill was to extend it to assisted living. In the original bill, there was a cap of a certain amount of money, $50 on the fees, and then $2. This has made it so that where the cost is at the material for the in-room installation, And then, of course, if the person is on Medicaid, then it's limited to 10% of their personal amount that they get on a monthly basis. And another change, I had to wrap this around my head too. We cannot, at first in the bill, we cannot prohibit devices with two-way audio. And then it says that there are devices that can be added. And then there are policies that prohibit cameras with drop-in features. Residents should have the right to choose this type of camera if they want. And so that is allowable in this particular bill, I mean in the substitute. And then we added that the facility shall provide Internet access to the extent Internet access is available to the facility. And that was added into the bill also. That was because we actually didn't address the Internet at the time in the original bill. And then we also added, we've been asked to include language that allows a facility to offer an opt-in turnkey camera system provided by the facility. And that was also added.
Is there any objections to the amendment? Seeing none, the amendment becomes part of the bill. And I thank the sponsor for talking to all parties and getting things changed.
There's in-person with Linda Curdoff in the Office of the State Long-Term Care Ons Buzman. Good morning, Chair Huffman, Vice Chair Johnson, Ranking Member Liston, Committee Members. My name is Linda Curdoff, and I am an Ombudsman with the Office of the State Long-Term Care Ombudsman. The Long-Term Care Ombudsman Program advocates for Ohio's nearly 200,000 residents who receive long-term care services and supports. These are individuals who live in Ohio 929 nursing homes 807 assisted living 837 adult group homes and those who receive services in their home Our staff and volunteers across the state are in the field every day speaking with residents. It's our job to educate them on their rights, empower them to speak up for excellence in their care. and if they want our help, we will advocate on their behalf to solve problems related to their health, safety, welfare, and rights. In 2025, we investigated and helped resolve nearly 10,000 complaints. So thank you for this opportunity to provide testimony to the committee for what is now the substitute bill. In March of 22, a bill commonly known as Esther's Law went into effect, and I know some of you on the committee were involved in passing that law, and we thank you. Esther's Law allowed for nursing home residents to have an in-room camera for monitoring purposes. And as an ombudsman program, we say to this committee that Esther's Law works. So having a camera gives the resident a sense of security, aids communication with family members, and brings to light situations that were previously ignored, downplayed, or explained away. And I want to give the committee a few examples of how Esther's Law has helped Ohioans living in nursing homes. A woman called me and shared that her daughter living in South Carolina, or the daughter called me, she lives in South Carolina, and her mother is in an Ohio nursing home. So thanks to an in-room camera, the daughter logged in one day and could see that her mother was falling out of bed, one arm and one leg dangling. she was able to call the facility an aide came in, repositioned her mother and prevented a fall that could have resulted in injury other videos have made their way to the media and you may have seen some of the stories an aide flips on the light in a woman's room someone who's living with dementia at 6am throws an adult brief in her face and says get your ass out of bed pardon the language. In another video, you can see call light going unanswered for hours. Families have shared with the ombudsman program videos that are frankly disturbing. For almost a year, a father who required total care and could only communicate with a few words complained of pain in his ear and frequently pointed to his ear. When the family finally got a camera in his room, the source of the father's pain was brought to light. An aide, who changed the man's adult briefs on a regular basis, was maliciously sticking his finger in the man's ear, twisting and poking multiple times during a change. You can hear the man yell, stop, and scream in agony and frustration. This aide had been torturing this man for months, and it wasn't until there was a camera that the family understood the true cause of their father's pain. The substitute bill will extend this right, the resident, to have a camera for those who live in residential care facilities or RCFs. And RCF is the state licensure for what is commonly known as assisted living homes. So in particular, facilities that hold themselves out as memory care, or maybe there's a locked wing within a building called the memory care unit, these are often licensed as RCFs, residential care facilities. So residents living with dementia are especially vulnerable, and they will benefit from having this electronic room monitoring option. The substitute bill leaves intact the fundamental principles that were established in Esther's law in 2022. And the bill, as Senator Ingram outlined, has also addressed some of the concerns that have come up over the past four years. So we ask that you support the substitute bill so that assisted living residents and their families can benefit from the security, comfort, and connection of electronic room monitoring. Thank you for your time, and I'm happy to take any questions if there are any.
Any questions for the witness?
Yes. Thank you. Thank you very much for this and the work that you guys did on this. And it's important to make sure that the folks have the opportunity, and that's what they were asking for, which is why the bill is here. I do want to ask a question of you in regard to the facility supplying the camera. we don't talk about the limitation of dollars or fees that they can charge. I want to make sure that that is considered as we move forward with that, especially if that is allowable, that it doesn't become an additional burden on someone just because they want a camera.
Yes, through the chair. So we collaborated with a number of industry partners. As you know, originally we put a dollar amount, $50. Most of these cameras, I mean almost all of them, they're Wi-Fi cameras. You buy them at Walmart or you buy a Ring camera, you plug it in, you download the app. That's the camera we're talking about. So installation is, I mean I've installed a Ring camera, right? So it's not terribly difficult. The reason we asked for language to talk about the installation costs is because over the past four years as ombudsman, we have seen where facilities charge hundreds of dollars, and in the most egregious case, there's a chain of 20 nursing homes, and they charge $900 to install the camera. So that's why we asked for the language. And the industry said, okay, $50 is not enough. So instead of pegging it to a dollar amount, we said time and material for in-room, walls in, if you will. So the Ohio Assisted Living Association, OALA, they wanted their members to be able to offer an opt-in turnkey solution, and their argument was well if residents have the right to choose their own camera we could have so many different types of cameras We need an IT person which I don think that terribly accurate but again, ring camera, you plug it in. but if they wanted to have a package to offer to the resident and say, so the resident could do that, or they can still choose their own camera and follow Esther's law as it has been working for the past four years.
Thank you very much for working with the sponsor to make this bill better.
That will end the second hearing here on Senate Bill 154. I understand Representative Click is running late, so we'll move to third hearing on Senate Bill 320. Senator Rogner on athletic trainer compact. There's no in-person provided. There is written. if you can, for the members to see, and it will be online. That will end the third hearing on Senate Bill 320. Next up is the third hearing on Senate Bill 207. Designate Male Wellness Month and Take Your Dad to the Doctor and Dentist Day. There is no testimony on that. That is the third hearing on Senate Bill or House Bill 207. Next up, the third hearing on House Bill 377 regarding the use of light-based medical devices for hair removal. There's no testimony on that, and I will tell the members if they have any concerns on Senate Bill 320, 207, or 377 to let me know. In my opinion, those are ready to be voted out here in the near future. We will start testimony on Senate Bill 141 regarding Prescription Pediatric Extended Care Center. I would, and first up is Pan Green from the Easter Seals of Redwood. because of so many witnesses, I'm going to try to limit you to about four minutes if possible. And I will also say that when Representative Click gets here in a good spot, we'll kind of shift him in and we'll have his testimony real quick and then proceed back. So whenever you're ready.
All right. Thank you. Good morning, Chairman Huffman, Vice Chairman Johnson, Ranking Member Liston, and members of the Senate Health Committee. I'm Pam Green, the President and CEO of Easter Seals Redwoods, serving greater Cincinnati and northern Kentucky, and I'd like to thank you for this opportunity to provide testimony in support of House Bill 141 to create prescribed pediatric extended care centers in Ohio. I'm a proud resident of Cincinnati, and I'm also proud to have grown up across the river in the Commonwealth of Kentucky. And for people like me, when you grow up in Kentucky, you know that one of the things Ohio does a little bit better is to care for its most vulnerable citizens, including its children. So when Easter Seals of Cincinnati merged with Redwood of Northern Kentucky in 2022, I was shocked to learn that there's one area where we are not doing better in Ohio. And in Kentucky and almost 20 other states families of children with complex medical needs have access to licensed medical child care through PPEC Prescribed Pediatric Extended Care. It's a Medicaid-funded service that pays for skilled nursing and therapeutic supports in an early education setting. So I want you to imagine for just a moment that you have a child born with a disability that requires continuous medical or technological intervention, like the families that are here with me today. You use up all of your FMLA while they're in the NICU, and maybe your spouse does as well. Then your child's released from the hospital, and you have nowhere to go. Child care centers are not set up with nursing staff, and even if you can afford private-duty nursing, which few of us can, you can't afford it around the clock. If you qualify for a home care waiver, congratulations and good luck finding a home duty nurse that will care for a child with the risk that yours carries. That's the challenge that's faced every day by thousands of Ohio families, but it doesn't have to be like that. Across the river at Easterseals Redwood, our medical child care and five-star early education site, families can enroll children with complex medical needs in a child care that's supported by a team of nurses and therapists. Their children are learning and hitting milestones alongside typically developing children. Parents can continue to work knowing their child is safe and cared for. The frequency of hospitalizations goes down, and the costs of unnecessary hospitalizations are reduced. We estimate that our nurses prevented 50 ER visits last year for everything from G-tube dislodgements to on-site seizure management. So to just think about that, the cost of an ER visit to Cincinnati Children's Hospital is $3,126. When one of our kids goes to the ER, it almost always leads to hospital admission, which is $15,232 a day in the complex care unit. And unfortunately, based on their medical challenges, the kids we serve are seldom just there overnight. It's usually a multi-day admission. The potential savings to the state of Ohio for caring for these children add up quickly. Compared to a private duty nurse, Medicaid reimbursement is $620 a day, while PPEC is $300 to $350 a day across the nation. So that's the cost-saving side. But there's also the revenue side that we feel acutely in southwest Ohio. As we seek to grow, I have two board members who moved from Cincinnati to northern Kentucky because their children with complex medical needs didn't have access to medical child care in Ohio. Cincinnati is home to the best pediatric hospital in the world. Families relocate to Ohio so that their children can receive quality and specialized care, but because there are no medically licensed child cares in Ohio, many choose to live across the river in Kentucky. And finally, there's the human side. At a time when Medicaid work requirements are looming, this legislature has the opportunity to demonstrate to families of some of our most vulnerable children that you see their challenges and that you're willing to invest in resources that enable them to work and to care for their families. This bill does not require the creation of a new Medicaid waiver or the expansion of Medicaid. It simply adds PPEC as a service to existing Medicaid recipients who meet the specialized eligibility requirements A service I must emphasize again that allows families to work and provide for themselves House Bill 141 passed the Ohio House with a unanimous bipartisan vote in June of 2025 Since then, our sponsors, Representative Abrams and Representative Baker, have worked with the Department of Medicaid, the Department of Health, and the Department of Children and Youth to address concerns around eligibility and implementation, and today we face no opposition. You're going to hear from some of the families we serve as well as families who desperately want their children to have access to services like those we offer. And you're going to hear one consistent theme. They want to work, and they also want to feel confident that their child is safe. They want their children to experience the joys of play, of friendship, and to benefit from being included with typically developing children. I think we have a solution here that is that special unicorn. legislators seek, one that strengthens families and one that saves taxpayers money. On behalf of Ohio families and children with complex medical needs, I urge you please support House Bill 141 and I'm happy to answer any questions.
Senator Redmond. Thank you, Chairman. I don't really have a question. I just want to say that I toured the facility Easter Seals Redwood. Really loved what I saw. These were amazing kids, wonderful caregivers. There was a little baby that kept crawling to me. warmed my heart. So thank you for being here today. We were worried she was going to try to take one home. But one kind of got attached to you
while you were there. Senator Romanchuk. Thank you, Mr. Chairman. Yes, sir. You mentioned that it's difficult to find a home care nurse. Don't you have the same problem in a PPEC if you can't find a nurse to come into your home? How are you finding nurses to serve in a PPEC?
Yeah. So, you know, there's a nursing challenge everywhere. I would say for us, there are ratios for the nurses, and so we can have one nurse for four children, so that helps. But there's also, I think, nurses would prefer being in a center where they're supported by a team than being alone in a home. Many nurses are concerned about that. These are high-risk children.
Any other questions? Yes?
Thank you, Mr. Chairman. Thank you for your testimony. I had a couple questions in my head, and as you kept going through the testimony, you kept answering them, so I just want to make sure I have it all right. These are kids that already received Medicaid, so we're not expanding who gets it. When you look at cost, you're saying, hey, we actually save costs because there's expertise right there, so a G-tube dislodgement doesn't immediately lead to the ER environment. And then I've been thinking about what Senator Romanchuk brought up, which is sort of the economies of scale to some extent, so both in terms of workforce but also in bringing people together. So I guess can you talk a little bit more about, I guess, that part of it, the economies of scale and sort of the services that the PPEC are able to provide that may be otherwise distributed?
Yeah, absolutely. so in addition to the nursing services and again that we're able to distribute the services of one nurse across multiple children we also offer a variety of therapeutic supports so we offer PT, OT, speech, behavior and so families don't have to take off work to take their children to all of their therapy appointments so for families there's an amazing economy of scale there that I'm not sure that I spoke to and the other piece that I would say is to the recruiting challenge with nurses, one of our younger nurses said to me that what she loved about working in PPEC, that she wished she'd gone there straight out of nursing school, because you get to be with children to help them learn and develop versus just being in an acute setting, seeing them in a time when they're having a health incident. And so that's very appealing to nurses who want to have a longer-term relationship with clients.
Through the chair.
Thank you, actually. And as I think about it, they also then maybe get more consistent therapies leading to better outcomes.
Absolutely. Absolutely. Well, and just one quick example. One of our children, the family provided testimony when we were in the house. She came to pick her daughter up, and our nurse said, you know, we noticed some unusual eye movements with your child. and you may want to ask your physician at Children's to take a look at that. And she had an appointment, and sure enough, she had an undiagnosed seizure disorder. And because our nurses are with her every day, they noted that difference and were able to alert the family before there was an incident. Thank you.
Any other questions? I'll ask you a couple. So you're seeing Ohioans in your facility in Kentucky?
We have a donor that makes it possible for us to serve two Ohio families each year.
And why doesn't Medicaid pay for that?
Because Kentucky pays Ohio when their citizens come to Ohio.
We don't pay to go out of state?
No, we've not been able to successfully get children into Kentucky.
Okay. So you said that following up on kids get hospitalized for two, three, four days afterwards. How does a PDAC save the system if that's a medically necessary admission?
How do we add that up as a savings for Medicaid? Absolutely. So a couple of different ways, Chairman Huffman. I think the front end is the big thing, right? that we stop it at the moment that it happens. And so for children with complex medical needs, because of so many of the kids we serve have very rare diagnoses, and things just compound and add quickly. I mean, I don't have data with me right now, but I would say when our children go, we have some data from other states, when our children go to the ER, they're mostly admitted. Okay.
Any other questions? Seeing none, thank you very much. Thank you, Chair. Next up, Amy Auberger, Cincinnati Children's Hospital Medical Center.
Good morning. Chairman Huffman, Vice Chair Johnson, Ranking Member Liston, and members of the Senate Health Committee, thank you for the opportunity to provide testimony on House Bill 141 this morning. My name is Amelia Auberger, and I would like to share with you the importance of prescribed pediatric extended care centers. Excuse me. I'm a licensed social worker at Cincinnati Children's Hospital. I work in our complex care center, which provides primary care to children with medical complexity, in addition to my role at Cincinnati Children's. Oh, I'm sorry. In addition to my role at Cincinnati Children's, I am also the mother of a child with medical complexity and special health care needs 16 years ago my daughter Addie was born at just 23 weeks gestation She was 11 inches long weighed one pound seven ounces and spent the first 119 days of her life in the neonatal intensive care unit To give perspective on how tiny Addie was at birth, this is the size of the diaper that she wore for her first two months of life. and these are her tiny footprints that were taken just a couple days after birth. While incredibly grateful for the opportunity to bring our baby girl home from her long hospital stay, my husband and I were both employed full-time and started to stress over how we were going to maintain our jobs while caring for our sick daughter. What started out as a social worker and a mailman living the American dream turned into a harsh reality as we blindly navigated specialized child care for a baby who was barely five pounds and discharging on oxygen and a feeding tube. Although Addie had skilled needs that would qualify her for private-duty nursing in our home, our insurance plan did not offer this benefit, and we were over the income for Medicaid. After quickly learning that there were no child care centers in our area that were equipped to care for a child with special health care needs, We were forced to take a hard look at our finances to determine how we were going to fund private care for our daughter. We contemplated going down to one vehicle, selling our home, and moving into an apartment so one of us could leave the workforce and care for Addie while the other worked to support our family. After much stress and crunching numbers, we ended up making the necessary sacrifices to hire a private provider who we trained to provide Addy's medical care in our home. While this kept us both working, the cost of this provider was more than our monthly mortgage payment and eventually depleted our savings and caused other financial hardships. We continued to pay the provider out of pocket for the next seven years until Addy finally came up on the waiting list and was granted a waiver through the DODD system that helped offset the cost. Moving forward in my career, this experience created a passion and determination for me to advocate for other parents of children with medical complexities who also have no safe child care options in Ohio. This resulted in my position as a social work care manager, where I can say without hesitation that the lack of options for safe, trained child care for our patients is the number one factor that creates financial hardships for the families we encounter in complex care. This financial strain then creates a domino effect of social determinants of health for the patient that are incredibly hard to navigate and overcome. My position in complex care led me to meet Amanda Lunsford and her son, Salim, who was a patient in our clinic. Salim came to complex care when he was 11 months old as he met criteria due to his developmental delays, G-tube to sustain nutrition, and oxygen to sustain life. I remember clearly the first time I met Amanda as she sat in the exam room with Salim, his twin brother and his sister, was sitting on her lap. It did not take long for Amanda to share her story of how she recently became a single parent and the barriers to maintaining employment now that she had a child with special health care needs. She went on to share that she was a certified nursing assistant and was worried about how she was going to return to her full-time job in the nursing home, where she worked prior to the birth of Salim and his twin She told me that she knew she could get her typically developing children into a daycare center down the street from her home but was at a loss for who could care for Salim with his medical challenges I remember the look on her face when I shared with her that Salim's Medicaid plan would fund private duty nursing for him in the home, and this would allow safe care for him in her absence. It was a beautiful sight witnessing the weight of the world lift from her as we talked through the process. She asked how soon nursing could be in place, as she had not been able to return to work for many months, leaving no choice but to collect all the government assistance she could and support the entire family with what Salim received in SSI. She shared the shame she felt by being fully dependent on government benefits when she had spent the previous 14 years working as a CNA in a nursing home. As I began to make referrals for nursing, I learned quickly that nursing agencies were reluctant to onboard Salim for nursing, as they reported having difficulty finding nurses who were willing to work in the area of town where Salim lives. It was explained that high-crime areas are not a desirable work environment for nurses, therefore they opt to take other jobs in other homes. After nursing options were exhausted, I scheduled a meeting with representatives of Medicaid and tried to sell the idea for Amanda to be paid as a home health aide to provide at least some of the care she was already providing to Salim for some payment. While the representatives were sympathetic to Amanda's story, they could not approve this plan as the rules were clearly written that Amanda would have to be a licensed nurse for this to be possible. This was crushing to Amanda as she was eager to get back to work and support her household as she did prior to Salim's birth. As the days and months went on, I found myself dropping off gift cards, food bags, and just about anything I could get my hands on just to help offset the cost so she could meet the basic needs for her children in her home. We even discussed her moving to Kentucky where PPEX were already established, but she was unable to save the money needed for deposits and other moving expenses due to her inability to work and every cent of Salim's monthly SSI check was being used to meet household needs. In my 30-plus years of social work, I can honestly say that I have never met anybody who wanted to be gainfully employed again more than Amanda. It was heartbreaking to watch this family struggle just because her community did not have a safe child care option to meet her son's medical needs so she could continue to be gainfully employed. To conclude my testimony today in support of House Bill 141, I hope I've been able to give you at least a glimpse of how lack of trained child care providers for children with medical complexities impacts not just the child, but the entire family. We can solve this problem by voting in favor of House Bill 41, which would support PPEX and finally have a safe and inclusive child care option for medically complex children in the state of Ohio. I truly want to thank you for your time. It has been a pleasure and a privilege to present to all of you today. I'm happy to answer any questions you might have.
Questions for the witness? See, I'll ask, I'm trying to understand this. So for the first seven years, you were on the waiting list to get a waiver.
Yes.
And so how would this if this bill passes would you still be in the same situation on the waiting list for seven years Or how would this change your situation So it would have changed our situation because we could have had a plan for her coming from the NICU
and been able to have her in a safe place for child care. We would not even have needed to be on a waiting list to try to get a waiver for our daughter through the DD system, and that waiver could have been saved and spent for somebody else because we needed that solely for her to have some sort of care in our home. And so with this system, she could have just went right into that
and Medicaid would just start paying for that rather than waiting for seven years?
Yes. Yes. She could have gone straight into the home. I'm sorry, straight into a P-PAC, had the care that she needed as opposed to us having to. She's our child. She's our responsibility. I'm not saying that it's Ohio's job to tell us what we need to do, but it's just an example of the patients that I deal with and their families every day of what we go through, trying to problem solve.
What can we pull together? What can we possibly do? Where can you cut? Because you're going to have to pay for this or you're going to have to stay home, which significantly impacts household finances. And the PDACs are typically 8 to 5 or 7 to 6, just daytimes, or is it 24 hours?
It's not 24 hours. It's longer than the 8 hours, and I know that they have some on the weekends as well.
Okay.
Yes.
Any other questions? Seeing none, thank you very much.
Okay, thank you.
Next up, Chevron Magnussen. Good morning, Chairman Hoffman, Vice Chairman Johnson,
Ranking Member Liston, and members of the Senate Health Committee. I would like to thank you for this opportunity to provide a testimony in support of House Bill 141 so we can bring prescribed pediatric extended care centers or PPECs to Ohio. I'm Siobhan Magnuson. I'm here today representing my family, my husband, Logan Magnuson, but most importantly, my three-year-old son, George. He's right there. I'm also here on behalf of Easter Seals Redwood. When George was born, my husband and I learned that he has a very rare genetic condition called L1-CAM, This unfortunately means that he has many brain malformations, which often results in learning disabilities. He also was born with hydrocephalus, cerebral palsy, and a few hormone problems, just to name a few. The day after he was born, he needed to have brain surgery to place his shunt that he would have to have for the rest of his life. He is the strongest little fighter, and after one tough month in NICU, we finally got to take him home. He went home with a feeding tube, medications to regulate his hormones, and 24-hour oxygen, again, just to name a few things. After NICU, we had doctor's appointments almost every single day for the first year of his life or year and a half of his life. These appointments included neonatologists, neurologists, neurosurgeons, endocrinologists, ophthalmologists. We still see most of these specialties. a few times a year, George also has therapy up to three times a week. As you can imagine, this has been a tremendous impact on our daily lives. I was not able to work for the first year of George's life, but after he became stronger, I felt more comfortable returning to work. We tried to search for daycares in Ohio that would be willing to work with us. Unfortunately, there were only two daycares that were willing to try, when he turned 18 months. They also told us that since George was not walking at the time, he would have to be in the zero- to four-month class until he became more mobile. This was a big concern to us since he was already 18 months old, and with his cerebral palsy diagnosis, we knew he would not be able to be mobile anytime soon. George is also nonverbal, and this seemed to pose a problem with daycares as well. Trying to manage all Georgia's medical expenses, therapy bills, and special needs equipment that included bath seats, gate trainers, standers, two sets of leg braces, three sets of hand splints, specialized wheelchair, has become nearly impossible with only one income. As you can tell, our out-of-pocket expenses are astronomical. We knew something had to be done. After finally discovering Easterseals Redwood in Florence, Kentucky, we were fortunate enough to secure one of two Easterseals Redwood subsidized spots for Ohio. I was able to start working again and contribute to our household. Even though things can still be difficult trying to manage all George's appointments, we were able to manage his care so much better with the help of the amazing people at Easterseals. By the time George graduated from Easterseals-Wetwood at the age of three, he enrolled in preschool at Three Rivers Elementary School. He had reached many new milestones. He made friends and became more social. he started coloring pictures, eating independently, walking in his gait trainer, standing by himself, and sitting up by himself. These are all the things some doctors thought may never be possible. The intensive level of support George received at Easterseals Redwood prepared him for integrated public school learning and made our family's financial situation much more secure because I was able to return to work knowing my child was safe, learning and growing in a trustworthy and caring environment. George is no longer enrolled at Easterseals Redwood, but PPAC was so important for our family that I used a day of PTO and travel here with him today to share with you the life-changing impact of this program for families like mine. I was one of the lucky ones who could cross the state line to get medical child care. Please help make PPAC a possibility for Ohio families that don't have that option. Thank you for taking the time to hear me out. Any questions?
Seeing none, thank you very much for your testimony today. Next up, Samantha Graves. And as she comes up, I'll make note that there's about 10 written-only testimonies on this bill from various people.
Ms Good morning Chairman Huffman Vice Chairman Johnson Ranking Member Liston and members of the Senate Health Committee. I am Samantha Graves, and thank you for the opportunity to speak today on behalf of PPAC Centers. My daughter, Lila, is seven weeks old today. She was born with a congenital aqueductal stenosis caused by a rare genetic mutation. The condition blocks the normal flow of cerebral spinal fluid, causing it to build in the brain and her ventricles to enlarge. The pressure from that buildup can affect brain development. We first learned about her condition at my 20-week anatomy scan. Shortly after that appointment, my husband and I met with a team of neurologists, neurosurgeons, and NICU specialists at Cincinnati Children's Hospital. They explained that the fluid would continue to build up and that she would need surgery shortly after birth to relieve the pressure. An MRI showed abnormal brain development because there wasn't enough space for her brain to grow due to the fluid buildup. We were told that Lila's prognosis could fall anywhere on a wide spectrum. She may face profound developmental challenges or may develop relatively typically. The truth is that no one can predict her future yet. We will know in the months and years ahead as she continues to grow and we watch to see whether she meets typical developmental milestones. After Lila was born, at just three days old, she underwent neurosurgery to place her shunt. She spent time in the NICU and initially needed oxygen in a feeding tube. It was a difficult and emotional start, but Lila is already showing how strong she is and is home with us now. As her mother, I believe strongly that early intervention will give Lila the best possible chance to support her brain development. From the moment we received her diagnosis, we knew traditional child care may not be an option for her. She will need careful monitoring, access to therapies, and a safe environment that understands her complex medical needs. A PPAC program would provide exactly that. In a PPAC setting, Lila could learn and grow in a safe environment with trained medical staff who can monitor her shunt, respond quickly if issues arrive, and support her medical needs. At the same time, she would have access to therapies and the opportunity to interact and socialize with other children. Those early years are critical for brain development, and programs like this can make a meaningful difference in a child's long-term outcomes. Without access to a program like this, my family will have difficult choices to make. My husband and I, along with other family members, may have to make some significant sacrifices so that someone can stay home to care for Lila. I myself have worked in the child care field for over 15 years. I currently direct and teach in a small preschool program in Cincinnati. Earlier in my career, I worked at a small child care center in Cincinnati, and from time to time families would ask to enroll children with significant medical or developmental needs, and we tried to accommodate that. But the reality was we often did so without any additional resources or support, and sometimes those children had to be placed in much younger classrooms due to mobility issues or only with teachers who felt comfortable taking on the added responsibility. Those families were doing the best they could to find safe care for the children, but the truth is that for many of them they had no appropriate options available. That is why it is surprising to learn that PPAC centers are available just across the Ohio River in northern Kentucky yet families like mine in Cincinnati Ohio do not have access to the same type of care and support This bill would change that. It would help ensure that children with complex medical needs can access specialized care therapies and safe learning environments during the most important developmental years of their life. It would also support families who are already navigating incredibly challenging circumstances. Children like Lila deserve every opportunity to reach their full potential. Access to specialized early care programs like PPEC could make a meaningful difference not only for her, but for many other children and families across Ohio. Thank you for your time and for considering this important legislation.
Thank you very much. Is there any questions for this witness? Seeing none, thank you very much. Next up, Willis Edwards.
Chairman Huffman, Vice Chairman Johnson, ranking member Liston, and members of the Senate Committee, thank you for the opportunity to speak today. My name is Willis Edwards, and I'm the parent of an 8-year-old daughter named Morgan, who has significant medical and developmental complexities. Morgan has sat B2 associated syndrome a rare genetic condition that impacts nearly every part of her development and daily functioning Because of her diagnosis Morgan is nonverbal and communicates using an AAC device She has cognitive delays cerebral palsy autism and requires ongoing occupational therapy physical therapy and speech therapy At school Morgan is in a multiple disabilities classroom and needs the support of a one-on-one aid to ensure she has safe and able to access learning These are not challenges a typical childcare environment is equipped to manage and as a result families like ours have extremely limited and often non-existent options for safe developmentally appropriate care. The truth is a raising a child with medical complexity affects every part of our lives. My wife and I love Morgan deeply and we're committed to giving her the best care possible but the support system family like ours needs simply do not exist today. We have to fight every week, sometimes every day, to make sure Morgan receives the services, therapies, and accommodations she needs. We advocate constantly in medical settings, school settings, community settings, spaces, just so she can access opportunities most families take for granted. Outside of school, finding care for Morgan has been a long and difficult journey. We knew early on a typical child care setting could meet Morgan's needs. In fact, at just three years old, she was asked to leave her daycare because they were no longer able to provide the level of supervision and the care she required. That moment was heartbreaking, but it was also our first clear sign that the systems around us were not designated for children like Morgan. Today, at age eight, Morgan is still in diapers, which automatically excludes her from many child care programs. She has little safety awareness and is prone to elopement, meaning she can wander off quickly and without understanding danger. She requires constant one-on-one supervision to keep her safe. These are not things that a typical child care provider in a trained or staffed facility can take care for. It's simply not an option for our family. The lack of appropriate child care affects every part of our lives. My wife and I remain committed to giving Morgan the best care, But the reality is that her medical equipment therapies and ongoing care are expensive We both have to work full to provide her needs and yet the very thing we need in order to work a safe specialized childcare environment is the one thing we cannot access in Ohio Some summers are especially hard. No summer programs, camps, or childcare facilities would take Morgan because of her medical and behavior needs. Every year we are left patching together care from relatives when they are available, or hiring additional help at our own expense. This brings a significant financial strain and stress that is not stable and predictable in no place where we feel confident leaving our daughter so she can work. We first learned in Morgan's diagnosis, even when we first learned of our diagnosis, even our physicians at Cincinnati Children's, which is a great facility, shared that there were very limited resources local for SEPI too. He recognized a specialized clinic in Arkansas, one of the only centers familiar with her condition. Every year we pay out of pocket to travel to Arkansas so more can receive a week of comprehensive evaluations and care and planning. While this is critical for our well-being, it places a major financial burden and logistic burden on our family. Is that another example of the extraordinary lengths families like ours go to simply to access appropriate care? Now, Easter Seals, Redwood, and Cincinnati Children's will speak to the fiscal and the clinical aspects of this bill. What I hope you heard from me is more the human side. that is what the daily life looks like of families reading a child with medical complexities. We're doing everything in our power for our daughter, but we cannot do it alone. We need a system that acknowledges the reality of families like ours and gives our children a place where they can truly belong. Passing this bill will provide dignity, safety, and opportunity, not for just Morgan, but for so many children and parents across our state who are caring for similar burdens. Thank you for your time.
Is there any questions? Seeing none, thank you very much for your time today. Thank you. Next up, Dr. Scott Calhoun, Cincinnati Children's Hospital. Whenever you're ready.
Chairman Huffman, Vice Chair Johnson, Ranking Member Liston, and members of the Senate Health Committee, thank you for the opportunity to provide testimony on House Bill 141 regarding prescribed pediatric extended care. My name is Scott Callahan. I'm a board-certified general pediatrician at Cincinnati Children's Hospital Medical Center. For the past eight years, I have been the medical director of the Complex Care Center, which provides primary care for over 750 regional children with special health care needs and medical complexity. To qualify for our clinic, patients must be followed by three or more subspecialists, have medical technologies that would include tracheostomies, ventilators, gastrostomy tubes, ventricular peritoneal shunts many of which have been mentioned this morning our multidisciplinary team which includes physicians nurse practitioners nurses social workers pharmacists care managers dieticians community health workers and our administrative staff provide outpatient primary and acute illness care for our patients we provide recommendations on medical equipment and support families and engaging with community resources and guide families in identifying goals of care, which sometimes include involvement in palliative and hospice care. Our team is dedicated to providing high-quality care to some of the most medically complex patients. Recent estimates from the 2020-2021 National Survey of Children's Health reports that approximately 20.1% of children in Ohio have special health care needs. Many of these children have limited options for child care outside of their immediate family circles related to their medical needs. While many of the patients may qualify for home nursing related to their medical complexity, we know that there is a national shortage of licensed nurses to fill these hours. The and the lack of home nursing or alternative child care arrangements are significant and often involve extended hospitalizations and high health care costs. In 2022, at our hospital alone, children with medical complexity had 3,952 avoidable inpatient days due to a lack of access to home and community nursing services. The inpatient care for these Cincinnati Children's Patients cost Ohio Medicaid and private insurers an estimated $22.5 million. The serious financial and psychosocial costs that patients and families experience through extended hospital stays are immeasurable. We know some families who have had to make the heartbreaking decision to place their child in long-term care facilities because they are unable to secure the necessary nursing to support safe care of their child at home. These children's limited access to standard child care and early learning programs in Ohio extends far beyond the walls of our hospitals. The negative impact of this is experienced by children themselves in the form of exclusion from learning and social opportunities with their peers. Families often experience increased financial and psychosocial stressors related to reduced employment. This impact extends to employers as up to 50% of caregivers have work disruptions due to lack of child care. pediatric extended care centers or PPEX therefore present the opportunity for children with medical complexity to receive daytime care within licensed child care centers with trained medical personnel who can administer prescribed cares and therapies in addition to minimizing avoidable bed days PPEX also helps to decrease reliance on emergency departments because staff can address most medical issues on site. Importantly, PPEX allow these young people the opportunity to interact, socialize, and develop alongside other children with and without medical complexity. PPEX currently exists in 18 states, including Delaware, Colorado, California, Florida, Kentucky, Louisiana, Maryland, Minnesota, Mississippi, Nebraska, Nevada, New Jersey, Pennsylvania, South Carolina, Texas, Wisconsin, Virginia is in the process. And these serve as feasible models for physician-prescribed inclusive and cost-effective solutions to the current child care challenges faced by medically complex children. I'll abbreviate the rest of my testimony and just get to I believe that all children deserve the opportunity to participate in positive learning and social environments that support their development. For children with special health care needs in Ohio, though, the opportunities to do this are currently very limited. House Bill 141 would establish prescribed pediatric extended care centers, which would have positive impacts on children with medical complexity. Their parents, employers, and the taxpaying citizens of Ohio would benefit. As a pediatrician and father, I ask you to vote yes on House Bill 141. Thank you for allowing you to provide testimony. I'm happy to take any questions.
Any questions for the witness? Seeing none, thank you very much. Next up, Dennis Grant from United Rehab Services.
Good morning. Thank you for the opportunity to present to you all today, Chairman Huffman, Vice Chair Johnson and Ranking Member Liston, as well as the rest of the Health Committee. You know, I've been with United Rehabilitation. I'm going to abbreviate a lot of this. I think Pam Green and the parents have covered most of what we all need to hear. I think the fact that we have so many people here today speaking on behalf of this bill says a lot about how important this is to so many people across the state of Ohio. I've been with United Rehabilitation Service for 25 years, and in that time we've continued to grow our childcare program. We have the only childcare program in the state of Ohio currently that has nurses as well as OT PT speech therapists on staff So if you want to say we a P on light you know we able to care for kids with G maintenance with catheterizations, with managing seizures, with dealing with behaviors. You know, our OTPT speech therapists are seeing kids throughout the day. We're able to support families so they can continue to stay in the workforce. They're not missing work to go to therapy appointments on a regular basis. and they have a place that can take their child and keep them safe, regardless of their medical issues. We are not staffed at a level that would accommodate some of the children that you're hearing about who are on ventilators and have really high complex medical needs. However, even at the staffing levels we have, there's no reimbursement for the nursing services or other extra equipment and therapies that we provide, so that we wind up operating with a budget that loses about $300,000 to $350,000 a year, and we make it up through grant writing and fundraising and personal contributions. And if there were a PPEC program in the state of Ohio, we could actually serve more children with higher complex medical needs than we currently can. But simply, we can't afford to do that right now. So how many individual families are going through what some of these families have already talked about, having to give up a job, having to compromise their quality of life and that of their child as well. So there is a great level of economy of scale in being able to provide PPEK services in the model that we're talking about. And I would love to see that come to the state of Ohio. We struggle every day to be able to meet the needs of some of the kids we have now. But we know there are families out there suffering and that we want to be able to help them. So I'm going to give back as much time as I can because I think you've heard a lot already and there's more to come. Any questions? I'd be happy to respond to those.
I'll ask you one real quick. So do you see yourself becoming a PDAC?
I mean, I know it's complex, you know, all the rules and complexity and things,
but do you think that your board would say this is something we should do, get these highly complex ones?
Our board is fully supportive of us expanding services to become a PPEC center if that becomes a possibility here in the state of Ohio.
Any other questions? Yes.
Thank you, Mr. Chair. I just have a question regarding the long-term care, because there are some children who have complex medical situations that their parents, that they're in a, oh shoot, what's the name of the place? It's in Sharonville, if anybody knows, in the Cincinnati area. St. Joe's?
Yeah.
Yeah. And what kind of opportunities, or is there a waiting list there even,
that they have to put them in long-term care instead of being able to go home or be at home?
What's that comparison? What does that look like?
Well, you know, Dan Conner is the executive director at St. Joe's. I've not really talked to him about that. I know they have a really high need for that. And they're blessed with the fact that they do keep some beds open so they can provide respite opportunities for families who simply need a break for a week if they're going to be out of town or have medical surgeries coming up or something. we feel like there's an opportunity to kind of create this continuum of care from what St. Joe's provides on a residential basis with 24 hours a day to a program like ours where we're serving children ages 6 weeks up to 6 years in traditional child care with nursing and therapies and everything on site from 6 in the morning until 6 at night We also serve kids 6 to age 17 who are school after school whenever schools are closed and all summer long So we know families are out there who desperately need our services. And we certainly hope you all can support this bill. Thank you.
Any other questions?
Senator Robinchak. Thank you, Mr. Chairman. Good morning. Good morning.
So you're currently providing some of these services without reimbursement.
Thank you for that. If you were to receive reimbursement, you'd trade that off for being licensed. Do you have any concerns at all that the license requirements will become extremely burdensome?
We have the Department of Health sitting here. So sometimes what you ask for turns out to not be necessarily a good thing because that level of regulation, which I think is a license situation, is good for parents, so parents know that, yes, you can do what you say you're going to do, and there's some oversight being provided. But from the provider standpoint, are you sure, without knowing what the requirements will be and what the rules will say, are you okay with having to go through a licensure-type process and meeting all those requirements, whatever they'll be?
This bill is silent on that.
Yes.
Well, Senator Romanchuk, I appreciate the question. It will be a challenge, of course, for us to, I guess you want to call it, gearing up to be able to meet the needs of those children with the most complex medical needs. The devil is always in the detail, and we do have great concerns about what the eligibility requirements will be. We know that most of the other states that have PPEC programs currently have a Katie Beckett waiver that does not include parent income when considering eligibility. it's the income of the child, so that 100% of the families who need this service can access it. My greatest concern would be that we restrict that so much that we're not able to bring in enough people to create that economy of scale we've been talking about. There currently is a program here in the state of Ohio through the Department of Children and Youth called a special needs waiver, and if you have a child who does have medical needs, behavioral needs, things like that, that we are able to document that there's an increased level of staffing and medical care and things required, that we can get twice our current tuition rate or current tuition rate paid by the Department of Children and Youth for low-income families. However, we have more than a dozen other families who are private paying for child care, whose children we don't get an extra dime for because they're not eligible for Department of Children and Youth publicly funded child care. So it could be a challenge, and we are greatly concerned about what the details look like when they start writing the rules. I said that the bill is silent. I haven't actually had an opportunity to read the bill yet, so maybe it's not silent on those requirements. Usually they are, but maybe they're not. No, I agree with you. I think that is silent, and that would be in the rulemaking process. They're fairly specific about ratios and the number of nurses and staff that we would need to have available, but it doesn't truly speak to that eligibility piece, and that's our greatest concern.
Any other questions? I'll ask you, can you say a little bit more about the Katie Beck waiver?
does this bill allow us to request or require the department to request the waiver and and that is for people with a higher income would still be able to get it paid by Medicaid even though they not eligible They would have to apply for that and document the medical need, but their income would not be considered when they're evaluated for their eligibility for the waiver.
And do you know if this bill currently requires us to ask for the waiver, or you're not sure?
I couldn't speak to that.
Okay. If you're asking if the state would have to ask whether they have the waiver? We would not be able to probably take that.
Right.
Does it require the state to go to Medicaid and say we're looking for a waiver?
You would have to request to have the TEFRA waiver available.
Any other questions? Seeing none, thank you very much. Next up, Troy Hunter from Elevate DD.
Good morning. Chair Huffman, Vice Chair Johnson, Ranking Member Liston, thank you for the opportunity to provide testimony today. My name is Troy Hunter. I'm the President and CEO of Elevated, a statewide disability advocacy organization that advances supports and systems change alongside of individuals with developmental disabilities through our Down Syndrome Association of Central Ohio, Learning Aid Ohio, and Adult Literacy Ohio. I'm here today in support of
House Bill 141, which would establish prescribed pediatric extended care centers. Elevated we heard directly from families across the state about how difficult it is to find childcare that can safely and appropriately support children with developmental disabilities and complex needs. Through our childcare and developmental disabilities report, we surveyed over 700 families across 76 Ohio counties, and their message was clear. Ohio's childcare system is not currently meeting the needs of many families raising children with disabilities. Our data found that more than one out of every four families said that their child with a developmental disability was not in paid care, not because they didn't want them to be, but because they didn't have access to available options. Among those families, 62% said the main reason that they cannot find a provider was because they weren't able to meet their needs. Even when families do find care, it's often unstable. 60% of respondents said a provider had communicated either directly or indirectly that they could not serve their child because the needs were related to their developmental disability. 70% said that they had to leave a provider and find a new one because their child's needs were not being met. These barriers have major effects on family stability and employment. 56% of respondents said their ability to work was significantly or very significantly impacted because they lacked access to child care for their child with a developmental disability. House Bill 141 offers a solution for a portion of these families, especially those raising children with complex medical needs. PPEX would provide a safe, structured setting staffed by medical professionals who can meet children's ongoing health and developmental needs while also giving families the ability to work and maintain stability. PPEX would not replace inclusive childcare or broader community-based supports. Those investments remain essential, but House Bill 141 would add an option to Ohio's continuum of care for children whose medical needs are currently leaving families with few to no workable choices. One family told us, I was a female entrepreneur who owned my own successful business. I had to close that business due to the lack of child care options and the many therapies and appointments and to be able to allow my child to participate in activities during the day. Families should not have to navigate a system that forces tradeoffs between their child's care and economic stability. Children with complex medical needs deserve safe, high quality care environments that support their health, development and inclusion. House Bill 141 provides an opportunity to strengthen Ohio's continuum for care for children and families. So thank you for Time and consideration. I respectfully ask your support for House Bill 141, and I'm happy to answer any questions.
Any questions for the witness? Seeing none, thank you very much today. That is all the witnesses for today. This will end the second hearing on House Bill 141. Next up, the first hearing for House Bill 162, Representative Click, enacting the My Child, My Child Act.
Good morning, Chair Huffman, Vice Chair Johnson, Ranking Member Liston, members of the Senate Health Committee. Thank you for your patience. This is my third testimony this hour. And if I'm out of breath, that's why. But I will thank you for your patience as I provide sponsor testimony on House Bill 162, My Child, My Chart. over the last year or so I was informed by many parents from different both sides of the aisle in different situations that all at once they were being noticed that they did not have access to their child's online charts and I had moms throwing their hands on their hips and what do you mean my 12 year old has to sign for me to have access to their medical records and sorry my phone was going off back there and so the parents were kind of outraged I ran into one mother who said she was turned over to a collection agency because of the fact that her child's MyChart, she didn't have access to it. She didn't know she didn't have access to it. And so she didn't see the bill. And so they were turning over, and this collection agency calls her. She says, what are you talking about? I always pay all of my bills. And they found this out. And it was because she'd lost access to the child's MyChart without any knowledge. Another mother, actually back in my district, actually she was my secretary at my church and an educator in our school. Her daughter was scheduled for surgery, and she had to pre-register for the surgery the next day due to a sports injury, and she went on to pre-register, and all of a sudden she didn't have access and was just suddenly cut off. She had no access. She had to go pull her child. Fortunately, her child was in our schools, but she had to pull her child out of class. Her child had to go on and give her access in order to register for surgery the next day, and a lot of these parents think this is kind of crazy. And this is not any type of a nefarious behavior by the medical profession, at least not in my opinion. But what happens is there's charting software does not bifurcate between what a parent has a right to know and what a parent may not have a right to know. And HIPAA says that if the parent does not have the right, if the parent does not have to consent for this act, then the parent does not have legal rights to see that information. I've tried. We actually talked about bifurcating the records. That was in the original version of this. All the informatics people said that's impossible. We can't do it. They cried out. They cried foul. We did edit and we amended that out of this. Here's the eight things that a child can do without their parents' consent. Some of them may be controversial, some of them may not be. But donating blood, emergency medical care for sexual abuse victims, testing for HIV, venereal disease diagnosis and treatment, drug and alcohol abuse diagnosis and treatment, medical care for minors prosecuted as adults who are confined to state correctional facilities, and certain outpatient mental health services for minors between the ages of 14 and 17 attain an abortion without parental notification through a judicial process And so because parents don have the rights to those eight things perhaps they just cut off the whole chart You can't see anything because they can't separate it. And so this bill takes a practical approach to this that has been bipartisan and received bipartisan support in the House Health Committee and on the floor. and what we just simply say is every year the primary physician, and we amended this as well because some of the emergency hospitals and the children's hospitals were concerned that it might apply to them just to see a child on one visit and they have to go through all this rigor most. So we said the primary care physician for that child, the pediatrician, once a year will certify to the parents and say these are the things that your child is allowed to do without your consent and because you don't have to consent to that, you will not have a right when they get to the age or these things might be happening, you may lose access to your child's online MyChart, but the child can sign off and give you access. So basically what we're saying is parents have a right to know what they don't have a right to know. In other words, give me the information because so many parents are caught off guard because they just don't understand the process. No one's informed them of this process. So what we're doing is just making sure that parents are informed and have an opportunity if they and their children decide to amend that situation. And we believe that it will create good family dynamics, good family conversations, and some parents may choose one way, some parents might choose another way, but this makes sure that families are well informed. Like I said, we've received many stakeholders it passed Health Committee 10 to 2 and it passed the House 87 to 6 and I will take a break here catch my breath and be happy to take any of your questions any questions for the witness
yes thank you chairman thank you representative so I I really love the transparency components of this I know about Ive. I have kids who are not quite teenagers anymore, although one's still 19 and I still find it hard that I can't order his prescription contacts because I'm no longer his guardian. Once a mom, always a mom. Yeah, well now he's 19 though so I understand it. But I certainly feel the challenges that parents face in that adolescent period where kids are becoming more independent and they have to give you permission for the chart and that's not always expected. So I think that that's a good thing. I wanted to touch base about transparency with the young person, with the child as well. So I know the bill says that health care providers have to inform the parents. I'm wondering your thoughts on saying, hey, health care providers have to inform the parent and that like that conversation needs to include both the minor, the parent, and the health care provider, or the information is provided to both. Because to me, I feel like it should be transparent on everyone's mind. So through the chair to Senator Liston, I always leave it up to you to bring in a thoughtful question
that I hadn't considered yet, or that hadn't been considered in the House, and I hadn't considered that yet. And this bill now belongs to the committee, so if the committee would choose to do that, I would not stand in the way of that. Thank you.
Any other questions?
Chair? Thank you Thank you Mr Chair I just have a question in regard to if in law right now there are those eight things that you listed that the minor can do without the parental consent Do you have any numbers or any evidence as to anything happening, and even some of these that are listed, HIV testing, do you have any data as to who has been impacted, other than your secretary and how many other people you've talked to in the grocery store? Yeah. Do you have the data as to who's not seeing what and what that means? Because my fear is that we're getting down to the abortion piece and not some of this other stuff. So where's the data?
Through the chair to Senator Ingram. And excuse me if I accidentally call one of you a representative. That's just where I've been all day. But I understand your concerns. And I don't know that that actual data actually exists. These are anecdotal experiences that have come to me that have been validated and verified. And you are right. Some of us have different views on some of those things and whether those things should happen or shouldn't happen. So I appreciate the fact that you identify that. I've tried to be very careful and cautious in drafting this legislation to only address the issue that we're talking about today. Certainly we could have debates on some of those things that are in that list. I have avoided that debate because I just want to deal with this issue of making sure that parents are informed and that there is transparency. And my goal, and if we're going to have those debates, let's have those debates somewhere else in another piece of legislation. But that is not a part of what I am trying to attempt to do here today.
Paul?
Thank you very much. Thank you for that. I get it, but it's still an issue. And my concern is, of course, it says my child, my chart. So this is specifically for the parents that can bypass those things, that the child or the minor has been allowed or by statute right now is allowed not to reveal. But what you're saying is that the primary physician, and it does address if it's something that happens on an emergency basis or something that doesn't have to be reported. But so what we're asking for is that no minor would have an online chart or even written according to, say if he doesn't have it in my chart, if it's kept somewhere else, that it's actually the parent's chart along with the child and they will not ever have that opportunity to not... to... have to disclose something to the parent. So, through the chair,
I don't want to cut you off if you're not finished answering the question.
Oh, no, go ahead. I was just trying to think through my question because I want to make sure that I'm... You know, if the child gets permission, and it doesn't say that the child has to give permission anymore. As a matter of fact, it prohibits. You did look like you were thinking, so I just wanted to make sure I wasn't jumping in too soon. No, go ahead.
So the child does have to sign off. We are not taking that role. We not just taking that and saying automatically the parents have the rights The child still has to sign off which some of the parents who don like the way it is they still want me to go farther than that. I don't think it's practical to go farther than that, just to be honest with you. So the child still has to consent, but what we're doing is we're taking that surprise element out that you're not finding out when you get called by the collection agency, or you're not finding out when you go to try to register your child for surgery the next day. That's not when you find out you don't have access. So we're skipping the surprise because they'll find out sooner or later. They're going to find out if it's a good parent who's trying to follow up on their children. We're just trying to be proactive in it. And Senator Liston can correct me if I'm wrong, but as far as I understand it and in my research, the parents do have access to the hard copies of the record. So you could go into the physician's office and say, I want the hard copies, and they would just give you what you're allowed to have. They won't give you what you're not allowed to have. But the technology doesn't permit that, because that's what I was trying to get to originally, is to say, okay, let's separate this and the technology. This is what you're allowed to have. This is what you're not allowed to have. And they said we can't, which I still don't understand it, because it seems like they should be able to do it to me. They said they can't, so we just listened to them. But you already have access to the hard files. It's just they close off all files, because they can't segregate it digitally for the parents. I hope that answers your question. No, no, if I may. You can choose to move on. Yeah, I'm going to finish. No, my concern is, of course, here's the reality. An eight-year-old, according to this bill, an eight-year-old says, okay, you can have my chart. There's no way for them to revoke that, even though it says they can revoke it, but it isn't included in the bill. My concern is that an eight-year-old is not paying the insurance themselves anyway. Right. So there has to be somebody who's being billed for whatever it is anyhow. You know that yourself. You've got kids. You go in and somebody says, who's responsible? Who's the patient? And if the child is the patient, it does that. Who's responsible is that parent. And so that information, the insurance, the bill and everything else should be going to the parents. So I don't buy that the my chart is a way for them to find out, oh, God, I'm getting sued. They have that anyway. I don't care what anybody says.
I'm not sure if there was a question.
There was no question. I'm sorry.
Maybe I'll ask a question.
So from her, the five-year-old and the parent gets the chart. Can the five-year-old becomes 13 and the problems of the 13 or 15-year-old change? At that time, can the 13 or 15-year-old block these things from going to the parent? or once you sign off when you're five years old, the parent gets the chart?
Thank you for that question, Chair, and I don't know that that is spelled out in the language. My presumption, and it is a presumption, would be that the child could revoke that at any time. But if you feel it's necessary to amend the legislation?
No, I was just, I don't know, just looking for clarification.
Like I said, the complexity of a 5-year-old compared to a 15-year-old greatly changes. My personal view is that if I'm paying the bills and if you're living in my home I shouldn't have access to your records. That's not exactly what this does. But that is my personal view.
Any other questions? Alright. Seeing none, thank you very much. That will end the first hearing today on House Bill 162. Seeing no more business before this committee, we will be adjourned. But before I hit the gavel, I will say we're not meeting next week, but in two weeks we have session and we will convene then. Health Committee is adjourned.