Senate Standing Committee on Health and Human Services

Calling the ten o'clock here--notice of informational briefing on--by the Committee on Health and Human Services. This is regarding the Developmental Disabilities Council. So first up, Hawaii State Council on Developmental Disability. Daintry Bartoldus.

Thank you so much, Madam Chair. Daintry Bartoldus, Executive Director for the State Council on Developmental Disabilities. I'd like to introduce also my Chair who I speak--who I report directly to. Her name is Sierra Whiteside. She is on Zoom. Sierra?

Please introduce yourself. Sarah, can you hear us?

Hi. Can you guys all hear me?

Yes.

Hi everybody. I'm Sierra Whiteside.

Okay, terrific.

Can you guys--

Is there anything else you wanted to say, Sierra?

My name is Sierra, Sierra Whiteside. As you know, I'm the Chairperson for the Hawaii State Council on Developmental Disability. I'm so sorry that I couldn't be there today in person. I would have loved to get to meet everybody. I'm actually in session right now for the MCH LEND Program here. I'm actually on Oahu right now.

And I just wanted to say that I'm really looking forward to working with everybody and getting to meet everybody personally and getting to work with everybody this legislative session.

Okay, thank you very much. And present with me is Senator Kurt Fevella.

Morning.

Member of HHS. Thank you. Please proceed.

Thank you. So I did submit to you folks our report to the 34th Edge said session. I won't go over it completely. You guys have this here. I just wanted to refer to it that it does go into great detail about who we are and what we have done this past year.

In a nutshell, the DD Council, we achieve our vision through the DD Act. We use our federal funds and matching state funds to create partnerships, collaboration and innovative programs and equal opportunities to improve the daily lives of individuals with IDD. We spark community change by bringing together people and partners to create equality in education, health, employment, and throughout their lives.

We empower self-advocates to become leaders and support their families as well. We educate the decision makers such as legislators--we're here as a resource to you--when coming to support individuals with developmental disabilities. At this time, that's all I have to say at this time, and I'd like to ship it over to Che.

Okay. Che Silver, please introduce yourself.

Good morning, Chair, Senator Fevella. My name is Che Silvert. I'm with the Hawaii State Council on Developmental Disabilities. So the main thing I wanted to share with you folks today--and I believe you have these documents, but we have extras if you need--is our legislative priorities for the 2025 session, and so essentially I just wanted to quickly highlight the different legislative priorities that we're going to go over for the coming session. And I'll just hand you those.

Okay, thank you.

So the first legislative measure that we're looking to introduce is currently being introduced by Senator Rhoads, and it's a pilot project for Kokua Kanawai's guardian Ad Litems and capacity evaluations. We've been hosting a working group that was created by Representative Tarnas.

It's kind of an informal working group to look at the different issues on guardianship in the State of Hawaii and conservatorship, and one of the main issues we found is that these are needed services that a court would use to try to essentially figure out more about cases in guardianship and conservatorship cases, but these are required to be paid for by the respondent themselves, so the people that are subject to guardianship, and essentially if they don't have any money, they can't pay for these things.

And so the group kind of saw this as an issue of basically it's inequitable justice. So if you have funds, you have a better ruling. If you don't have funds, you have less information. And so this is the first measure that we're looking at introduced this year. And as of note for a lot of these, they don't have bill numbers yet as you're still going through the drafting process, but when we have bill numbers, we'll update everything as well.

We also have our second bill, which is the support decision making bill, which will also be introduced by Senator Rhoads, most likely, and essentially this bill is trying to--is along with guardianship, it's the leading, best alternative to guardianship in the country, and so essentially, rather than going to guardianship and having to have all of your rights stripped away, it's a really simple process where you basically use another individual that you trust to like, make decisions.

And it's very similar to just kind of like talking story with your best friend or something like that, someone you trust who can help you make decisions. But the reason we want to get it codified in law is that those individuals that help you make decisions, if it's not codified in law, if they're trying to help you make financial or legal decisions, they have no ability to gain that information.

And so if you get in a medical accident or anything like that, they will not be able to see you, they will not be able to access any information because they're not family. So having this codified would just allow these agreements to have a little more oomph to them, is how I would say it.

We also have our health disparity measure. We've been introducing this measure for a couple years now through Senator Kanuha, and essentially this bill is trying to ask for $500,000. It's a two-year study. It would most likely be contracted through the University of Hawaii, and the whole point of this is to try to find out the different health disparities for people with disabilities in the State of Hawaii.

In general, at least in our experience, especially with the intellectual and developmental disability population, we just don't have a lot of state data when it comes to our population and the health issues that we have. We have plenty of mainland data that point to different issues, but in the State of Hawaii, we just don't have much.

And one of the really key things about this is that it would look at things by zip code as well, and so it would tell us kind of the different demographics and issues people are facing. And for the council, it would also help us do our jobs because it would help us identify where people with IDD actually exist in our state. Our fourth one is our ABLE Savings bill, and I'll be very brief on this one because Senator Buenaventura is the one introducing it for us this year.

But really quickly, essentially, ABLE Saving programs allow you to save money and not lose things like food stamps and Social Security and your Medicaid waiver services, and you can save up to a certain amount of money every year. And it's essentially disregarded from all those things. So this is kind of a workaround for people with disabilities to be able to have a little bit of extra money, save money, not have to do things like spend downs and things like that. It's really a really good quality-of-life thing.

And in the State of Hawaii, even though we're allowed to use able accounts, and the council has worked on getting them to be able to be opened, they're not being utilized very much. I think we have an estimate of about 200,000 people that could use these accounts and we have about 165 people that currently have an account.

So the main point of the bill is to give us a staff to get more people on these accounts using these accounts because the accounts themselves are great, it's just let's get people using them. And it also has an incentive for DOE students in the bill as well.

We also have--the last measure that we're looking to introduce is the Medicaid Buy-In Program or--I know, Senator, you're introducing this one. We just were supporting you on this. We really appreciate and support the conversation that we think we'll have it.

Sadly, Janelle Fiesta was not able to join us today, but she's an advocate who had a whole story about why a conversation like this would be important. And to just kind of summarize it, she's an individual with spinal muscular atrophy, which leaves her not being able to really use her legs and she needs attendance and things like that.

She works a full-time job and she's had a lot of issues because basically every time she gets even a small pay raise, she has to reevaluate if she qualifies for Medicaid, she might lose it, doesn't lose it. It's very stressful, and so that was just a story that we wanted to share and we have a full letter that she wrote that we can share with you folks afterwards.

Che, there's one other one that, I apologize, I didn't put on the list. Senator Kino is introducing it. It's Equity of Adult Changing Tables. It's a bill that has been introduced the last couple of years as well.

And then just the last one is really brief. It's just a, a resolution. Thank you. It's just a resolution on fetal alcohol spectrum disorder and trying to bring awareness to it. And those are all the measures that we're introducing this year.

Okay, thank you very much. Any questions? Senator Fevella.

I remember her story. That's the reason why supporting that bill 110% because it shouldn't be penalized, yeah? But the one that I wanted to ask questions is what you guys' talking about if you get this bill passed or if you know me, I'm your friends, and I go give you authority.

Everyone pre--power of attorney, you know, over me or you, whatever the situation is could help that or because even if you have that, that's not going to be enough to enhance a reason for you to have all my information and stuff that you need to gather for me financially, medically. Is that going to be not enough to have a power of attorney? You need a little bit more on this instead of just a power of attorney?

Yeah. So in other states where this has been implemented, support decision making is usually just one piece to power of attorneys, medical releases, things like that. So it just enhances it additionally.

Okay. Thank you.

Okay, thank you very much. Okay, next up we have Center on Disability Studies.

Good morning, Senators.

Oh, and we also have Senator Troy Hashimoto, our new member. Both of them are new members today.

Oh, great.

Please proceed.

Sure. My name is Kiriko Takahashi. I'm the interim Director at the Center on Disability Studies, which is at University of Hawaii at Manoa. Yes. I'm just going to use this PowerPoint to help us navigate what our center is about.

So thank you for this opportunity to share a little bit about our center and the work that we do for persons with disabilities across the lifespan. I use the pronoun she/her in a visual description. I'm a Japanese woman, middle-aged, and I have these bright fingernails that my son painted.

So our mission--next slide please--is to promote diverse abilities across the lifespan through interdisciplinary training, research, and service. And interdisciplinary because persons with disabilities is across all areas and sectors and we want to ensure that those who we train are not just educators, but also in health employment in all the areas from birth all the way to aging. And next slide.

We are actually a part of a national network called University Centers for Excellence in Developmental Disabilities, and we're also known as the Hawaii UCEDD. And our activities similar to the DD Council are authorized under the DD Act.

And we share a vision to work towards a nation in which all Americans, including Americans with disabilities, participate fully in their communities, and independence, productivity and community inclusion are key components. I want to mention that we're part of a 68 UCEDDs.

So there are UCEDDs in every state and jurisdictions including American Samoa, CNMI, Guam, Puerto Rico, and West Virgin Islands, and we received the funding through the Administration for Community Living and our sister agency--so we're sister agencies to the State Council on Developmental Disabilities and Hawaii Disability Rights Center.

So all UCEDDs work with DD Council and the protection and advocacy. At our center--sorry, this is a little bit first, so I'm going to come in--at our center we have two UCEDDs, so we not only cover the State of Hawaii, but we also work with American Samoa and the commonwealth of Northern Mariana Islands.

We use the funding to obtain other funding source. So we utilize that ACL funding to leverage, and last year we were able to leverage about $16M to support persons with disabilities across the lifespan, which means that every dollar we bring in, we make about $26 at our center.

And we work towards four goals or four core functions, and first goal is to enhance the workforce capacity in the state to better address the needs of individuals with disabilities and their families through provision of interdisciplinary pre-service and continuing education, which means that we train people, increase those who work with individual with disabilities and understand the disabilities in the way that's not just for fixing disabilities but for full inclusion and understanding what's the needs for the access for inclusion.

Goal Two--next slide--is to increase and improve the capacity of Hawaii's communities to provide quality service to individuals with disabilities and their families. And I know Daintry and Che touched base a lot on this earlier but we are really looking--in terms of health, the access and health make this self-determination of individuals.

So we do demonstration and model services, provide trainings to professional and community members about the needs and the importance of like self-determination, self-advocacy, and this Goal Two is one of our core activities that we do at the center. And we're not a university academic research center.

We are a unique position to bring in the research to the community and we are kind of like the bridge between the two. Goal Three is to advance knowledge and practice on issues of individuals with disabilities, and so of course, as a situated in the university, we conduct research evaluation and also policy analysis.

With the DD Council, we are the research arm and DD Council work as the policy arm and we collaborate on a lot of the needs areas that we need to bring down, and our objective how we meet this is to expand research capacity and for us it's really important to include persons with disabilities from the beginning of the research.

So we're not just researching about persons with disabilities but with regard to also the data that Che mentioned, we really need to hear from those who are living with disabilities and really identify what is happening in the field. Goal Four is to increase awareness knowledge of disability-related topics by disseminating the information.

So what we learn is important to disseminate to you, Senators, as well as our constituents and everybody in the state and also globally, and we make sure that the information is in accessible format, in easy language, plain language, so that everybody is able to understand and be informed.

So in the past year just want to highlight a few things. With the goal of interdisciplinary training, we were able to have--increased the knowledge of over 1,000 participants in work skills and about disability studies. We--for the Goal Two, we increased or we trained activities.

We had members. Over 6,000 participants participate about education and employment of persons with disabilities and this helps in--for people to understand the implication of disabilities in the workplace as well as changing their awareness and mindset.

And I want to mention that when we talk about disabilities, it's not just about physical disabilities but all the hidden disabilities as well. So not just the ones that's very visible. So mental health issues, sensory issues, as well as other health-related disabilities.

We also continue to provide technical assistance, and last year we were able to provide technical assistance to over almost 5,000 members to professionals and paraprofessionals about employment and education, and our goal this year is to really focus on health access and changing the mindset of all people who provide healthcare about not just focus on fixing disabilities but really listening and including what the needs of the person is. Next slide.

We have conducted many research over the past year, but I do want to highlight that our work is not done alone. We collaborate with multiple agencies and we collaborated at least with 43 agencies for research, and this is really important to build a robust information that we need to support those with disabilities.

We continue to inform the public about disabilities and one of our main conference that we conduct is our annual Pacific Rim International Conference on Disability and Diversity which is in April this year, 15th and 16th, where about 700 to 800 people across the globe participate and come to Hawaii to learn about disability-related issues.

Through the Review of Disability Studies Journal, because we are at the university, we're also able to distribute information through in the form of publication and journals, and we had 11,000--over 11,000 article downloads about disability issues, so it is very important that we continue to write about our issues and to share with others, and what we can do is because we're a national network and we have multiple counterparts, there are other areas like Hawaii and we can see what others are doing and be able to share best practices.

So far we have accomplished and continue to improve on support through like telehealth service through also ECOH Autism. It's a new practice that we are bringing in to have professionals be able to talk amongst each other about how to serve persons with autism spectrum disorder. We provide, continue to serve those who have been impacted on Maui Fire through mental health counseling.

We also work on providing access for those with intellectual and developmental disabilities to be able to acquire post-secondary education credits because they cannot be left alone at home and they need to be included as adults in the same way that everybody else can be.

So the end--and finally I do want to highlight that I know that you're interested, maybe mathematics too, but we do try to improve science and technology and engineering and math workforce. I know that is an area where all talents need to be tapped and persons with disabilities are often untapped talents that we are missing out and they can contribute really to solve the issues that we have in Hawaii that may also have a huge implication on health. So we want to ensure that we work closely in all these areas. Thank you.

Members, any questions? Okay, moving on. Next is Lou Erteschik, Hawaii Disability Rights Center. I don't see Lou here. Oh, you're on Zoom, Lou?

Yes, I'm on Zoom. Yes. Good morning. Good morning, Senator. It's nice to see you in the new year, and Senator Fevella, Senator Hashimoto. I'm Lou Erteschik. I'm the Director of the Disability Rights Center. Chair, you and I are pretty familiar with each other and I think you know my agency.

I'm not sure I need to go into a long recitation of everything that we do, but, but just--we are the state-designated protection and advocacy system, and so when Congress created the DD Council and, and CDS, they also created the P&A system.

And so we're sort of the legal arm of the tri-agency collaboration and we do collaborate a lot with, with, with both of, both of our DD partners. You know, we do a lot of, we do a lot of special education cases, we monitor facilities.

In terms of the, in terms of the legislative session, we don't have any particular bills that we're sponsoring, but I do, I do want to clearly support everything that the DD Council has stated today. In particular, I would urge the Legislature to take a serious look at supported decision making.

I think this is a, a really good idea. I first heard about this maybe ten years ago and at first I was not quite clear how it would work. I have over the years learned that several states have adopted this. It's a really good alternative.

I mean, some people clearly need to have guardians--there's no question about that--but there's a lot of people who don't and, and, but they need help, and so I think this would provide a codified structure to help make that happen.

I've been working with Che on this guardianship workgroup and there's all kinds of gaps and problems and resource constraints in the guardianship system. This would keep some people out of that system. So in addition to helping them in terms of their own liberty interests, it would free up resources that are otherwise being expended by the state, so I think it's a great idea.

In terms of what I otherwise might be interested this session, there are two things that come to mind. Senator, you undoubtedly recall a lot of discussion last year about assisted community treatment and this issue of the right to counsel, whether lawyers should be appointed, not appointed, or GAL.

Anyway, so what happened at the end of last session, there were two bills on this. In Senate Bill 2557, I was able to persuade Senator Rhoads and Representative Tarnas to put language in the committee report which asked the judiciary to provide some data on--so how often are, how often are lawyers appointed, because the Legislature left it to the discretion of the judge and so that was really important.

Unfortunately, Senate Bill 2557 got vetoed because it contained the same provision that was in House Bill 25--2159. So it made sense to veto the bill. That said, the committee report language goes away.

I've asked the judiciary if they would at least voluntarily provide that information, and I'm waiting to hear back. If they don't, I would really appreciate the help of the Legislature to get that information because I, I don't doubt that that issue may resurface again this session, so I think it would be illustrative in terms of any decision-making. The other is the DD system over at the Department of Health.

I mean, many years ago, before I was the Director, when I was a staff attorney, I brought and settled a lawsuit against the DD Division, which basically, among many things, required them to annually assess the needs of the DD and waiver population and seek a budget that would be sufficient to provide for their needs.

Over the last several years, both myself and I know Che and Daintry have witnessed what seems to be a pullback in the DD Division. I mean, as you know, sometimes what happens is after you settle a case or there's a consent decree, there's all this great action, and everybody complies, and then the bureaucracy being what it is, there's a tremendous amount of backsliding. And I'm concerned that that may be what's happened over at the DD Division.

And I'm wondering--I don't know for sure--but I'm wondering if perhaps they're not asking for an appropriate amount of money to do what they need to do because they've been cutting back in terms of eligibility criteria, they've been restricting the number of hours of services that people receive, and that's not what's supposed to happen because they're supposed to have enough money to do what the settlement agreement requires them to do.

So I would urge the Legislature to take a serious look at the DD budget that gets submitted this year and comb through it and see if it's adequate. Other than that, I look forward to seeing, seeing all you folks this session, and I'll be up there a lot, I'm sure, and I look forward to working with all of you. So thank you.

Thank you, Lou. Questions, members? Okay, we just had the WAM Health hearing yesterday or the other day, and we haven't--no one has projected us to the amount of the developmental disability budget, but look it over, Lou, and let us know what you think.

I would like--yes, I will. I will. So you're saying--

Part of the Governor's supplemental budget. Okay?

Okay. Okay. Thank you. Thank you, Senator.

Okay, next up we have Mary Brogan. Come on up. Developmental Disabilities Division of Department of Health.

Good morning, Chair. Good morning, Senators Hashimoto and Senator Fevella. Thank you so much for allowing us to share some information about our program. I am the Mary Brogan. I'm the Administrator for the Developmental Disabilities Division in Department of Health.

I can't work without my slides. Just a brief overview; our division serves people with intellectual and developmental disabilities statewide. We're a statewide program. We serve about just over 3,500 people across the lifespan that have a range of intellectual and developmental disabilities. Our primary funder is the Medicaid 1915c Waiver.

As you know, there's two waivers in Hawaii: the 1115, which covers the medical side of things and where the other waiver--the 1915c Waiver for people with IDD, and people must meet an institutional level of care in order to qualify for waiver services.

People have a range of conditions such as intellectual disabilities, autism, cerebral palsy, and other neurodevelopmental disorders, so neurodevelopmental, brain-based, and happening during the developmental period of people's lives. Most people have conditions that occur before the age of 22, impact their functioning--so people have support needs--and usually last throughout the person's lifetime.

There are a number of functional limitations that we address through our program through a range of services. Things like maybe needing support in taking care of yourself on a daily basis, being able to navigate the community, being able to engage in the activities in the community and at home that people choose.

Services typically use--although this is not an exhaustive list of our services--but the typically used services are residential supports, these are group homes, they're adult foster homes, day habilitation programs, personal assistance, community learning, community navigation, which is a new service that we're very excited about, employment services, and case management.

People can also choose a consumer-directed option so they can hire their own staff and direct their own services. Next slide. So in terms of the biennium budget request--so this is what is in the Governor's executive budget for waiver funding--on top of our base, we're requesting $10.1M in fiscal year 26 and 20.4 in 27.

The reason for the discrepancy in the two years is when the minimum wage increase kicks in. And that's probably the largest driver of the budget increase or the budget request altogether. So we built that into our rate considerations. The other budget request that we have is for a Federal Initiatives Coordinator.

There are new federal regulations that are emerging or that have been promulgated and we have to come into compliance with those, so somebody to coordinate those efforts, and I'm going to talk just a little bit more about that as well. The new regulation called the HCBS Access Rule is very data-intensive, it's very report-driven, very metric, and requires us to build on our IT systems to enhance our IT systems, and so we're asking for--between the two positions--two FTEs.

So the biennium budget request is largely driven on meeting federal compliance not only with the new rule, but with the ongoing waiver requirements which say that you have to pay providers what it costs to provide the service. You have to provide statewide. You have to provide what people need.

The costs also are reflected in an independent rate study that we completed and we will submit that as part of our new waiver application. So the 10.1 and the 20.4 are really the state share. So that gets matched by the federal Medicaid share, which is over--it's about 54% right now.

It is based on--indexed on federal poverty levels. Another part of our ask is to invest in the direct support workforce. We do work with our partners around the direct support workforce, but we have to, again, pay the wages that people need in order to work in the industry, and we're competing with elderly, with childcare, with, you know, all kinds of other direct support workforce.

And our workforce is down. It disappeared during the pandemic just like every other industry, and so we're, our providers struggle to compete in the marketplace for that. We also want to make sure that that's integrated with the quality of our services. So the request is also to support our waiver initiatives such as credentialing or certification for direct support professionals. So we just completed a pilot and are rolling in our first cohort of direct support professionals that will become certified, and this is a national certification.

So this is a strategy to retain and recruit direct support professionals and impact their knowledge and the quality of services. We also are building in neighbor island increases because it does cost more to provide services in the neighbor islands. We had always thought it was just the Big Island that was more expensive than the rest of the state, but our new data are showing that it's the entire--all the neighbor islands, it's Maui, Kauai, as well as the Big Island.

So there would be a rate differential to be able to support the services there; cost more, as well as, as well as some outcome-based payments that would incentivize innovation and growth of certain services. So next slide. You have a question?

Yeah, I guess it's more on the money side. So, so when you're ready to do your application for the waiver, so what is the federal climate looking like for you? Is it going to change much? Because I know for Medicaid, they're rushing, right, to get everything done before the change in Administration. What are you anticipating? I know your national association must be giving you some insights.

We can't really rush because the applications are five years apart. We can put in during the interim any kind of amendments to the waiver. I think my own view is that a lot of Medicaid changes will be impacted by proposals in things like block grant, which was raised in previous administrations, work requirements for--in order to participate. A lot of our things are tied to statute and regulations that are already existing, and so I think it would be hard to unpeel services for people with disabilities and aging that use home and community-based services.

I'm not sure exactly what the strategies would be beside to limit the population of like, Medicaid expansion, but the states that will be affected by Medicaid expansion are largely the red states. So I think there, there may not be that much support for it. I think where we're at risk is, is regulations being changed and, and we don't know the landscape on that, but I think that the Medicaid staff is bracing themselves for that.

Yeah, well, I think it's just people have to be ready to pivot potentially, which might frustrate people because you're working on one thing in one way and then you might have to change, right, so we'll see.

Yeah. I'm hopeful that our statutes at the federal level are protective of enough of people with disabilities.

So how often are you doing your rate study?

We do them at least during every five years, but--

Before you do your application?

Yes. But also when there's a change in conditions. So during the pandemic there were, we were able to bring in some more federal money to support the providers to support rates. So we did a rate study then and were able to justify a increase in payments.

You're proactive about it though?

Yes.

Okay. And at minimum it's five years then?

Yes. Or if we bring up a new service that we have to do a rate study--

Because, you know, it's a catch-22. When you do the rate study, it's obviously likely going to go up, but I think to keep up with the changing landscape of what things are actually costing, you need the rate study, right?

Because it's indexed to certain things like the wages, wage index, the Federal Bureau, whoever says--

Okay. As long as we're consistent because, I think, you know, it was getting us trouble on some of the other reimbursements and other, you know, health-related things, is we just don't do a study, so then we, of course, we can't raise the rates, and so--and people are like complaining because we don't have enough money. So at least we know five years. That's good. As long as you're on a regular schedule.

We're pretty proud of the way that we approach our rate studies. It has a lot of integrity and Medicaid really seems to like how we do the rate studies because they always accept them.

Great. Thank you, Chair.

Thank you.

Well, yeah. Senator Hashimoto is voicing our concerns about the incoming Administration, especially when you're talking about a 54% federal match. And if that 54% federal match dwindles down to like 20%, who's going to get cut, right? So--

Okay. And so it's good to know that you're looking forward.

Yeah.

I have a lot of wishful thinking too. I just think the age, blind, disabled population traditionally have been more protected than other Medicaid populations.

Okay, terrific. We'll move on.

So this--I think we finished this slide. Thank you. I mentioned the Home and Community-Based Services or HCBS Access Final Rule. It went into effect on July 9, 2024, so just this past summer, it was promulgated very quickly, and I think there was some anticipation of change in Administration is why, you know, the staff at CMS hurry to get this through.

And it protects and strengthens the Affordable Care Act, it advances access and quality of HCBS, and it improves outcomes for people or intends to improve outcomes for people using HCBS services. It is a pretty sweeping change for states. All states that accept funding under HCBS authorities must comply with this rule. And the next slide just shows the various timelines.

I'm not gonna go over this in any great detail, but you will see the aggressive nature of the benchmarks that we have to comply with between 2025 and 2030. We have to stand up a grievance system. 2027 is a big year for us where we have to do our incident management critical incident systems.

And this is all based on systems, IT systems primarily, to be able to track and manage and support staff in their quality management efforts as well as being able to report and stratify the data by different populations.

So it's intensive effort and this is what a lot of what our staff efforts are going to be going to at a certain level. Another big part of it is the payment adequacy, making sure that the majority of the rate goes to the direct support professional and not for other kinds of things.

And so it's called an 8020 Rule and it's still being talked about in terms of the final guidance, the regulatory--sub-regulatory guidance that will be coming out, but it's hard--it's controversial, but I think that the more that we can set some kind of floor for the actual workers that provide the service, the better it is.

So, next slide. So these are some of our initiatives. I won't go over all of them, but maybe some of you can recognize yourself in that wonderful picture. The DD Council, Self-Advocacy Advisory Council, have been seminal in creating a change in Hawaii, the voice and choice of people building socially valued roles, employment where Hawaii traditionally does not do well for people with disabilities and we have to put a lot of effort into that.

There's reasons why maybe that Hawaii lags behind other states, but I think that efforts like what the DD Council is putting forward around guardianship and supported decision-making really will help build that independence, so we support those efforts. At the same time, Hawaii has higher levels of guardianship than other states, and I don't know if it's our paternalistic nature, but it's something that really goes hand-in-hand with socially valued roles.

And then the HCBS's rule that I mentioned, charting the life course is our model for planning that involves our participants along with their circles of support to be able to look at their vision for a good life and looking at what supports and services need to be in place for that to happen. Next slide. Positive approaches.

Can you see? We put James here because he has helped us so much with our trauma-informed and positive approaches initiatives and being able to look at the, the role of, of trauma and lack of ensuring human rights in people's lives and how we need to systematically address that and change our approaches and our relationships with our participants. So that's another core initiative that we have. Next slide. The Workforce Development and Service Quality.

I mentioned the Career Pathways and DSP Certification initiative that we have that we're extremely excited about because, again, it is a national certification. We have a learning management system that we're basing it on. We were able to leverage ARPA funds for that, and the other one is waiver agency quality management, which we require in our standards.

Next slide. And then using data, we have a new IT system tiptoeing into the analytics and AI just because there's so much data, using it for data- informed decision-making and again, quality management and determining whether our services make a difference or not. I'm gonna-- because there's not that much time, I'm just gonna leave this with you. This is what we envision, our data infrastructure. I put a lot about data in here because it's my favorite area. I think that's it.

Well, thank you very much.

Thank you very much.

Any questions for Mary, other than the budget? It's--that's going to be problematic. Okay, thank you very much. So next up, we have FASD, Hawaii FASD Action Group. Amanda Luning.

Hi, folks. Thanks so much for having me. Thank you, Chair. I know that you're already quite a significant supporter of our efforts. You're welcome to look at that at a later time at your leisure. I just wanted to kind of introduce myself and say hello. We've been doing volunteer work in the community since 2015.

We have Darlyn Chen Scovell has been doing a lot of legislative advocacy in relationship to fetal alcohol, and so Act 192 that you're familiar with has allowed us to kind of grow our efforts and to expand them a little.

So for those of you who are not familiar, fetal alcohol spectrum disorders are a spectrum of disorders, which I think is really important to talk about. Five minutes is never enough for anything, and it's a really, really complicated issue.

What we really hope in our efforts in saying that FASD is a kako'o thing is acknowledging that it really touches a lot of our communities in ways that we may not even know. So again, my name is Amanda Luning. I am a public school kid, community college.

I specialize in infant and early childhood mental health and maternal care as a clinician. I am also a maternal public health researcher. My clinical work over the last 20 years or so has led me to recognize that this is a multi-generational issue.

So I was the clinical director at Women's Way for many years, which is the only residential substance use treatment program that we have in Hawaii for perinatal substance use disorder, and so I had infants who were being born into our programs in a therapeutic nursery who we knew were exposed to alcohol.

We had, you know, confirmation because mom was with us for alcohol abuse. She had a substance use disorder. And it was really challenging even to get those infants diagnosed, even though we had confirmation. So I started to explore that with the Action Group and as a volunteer, and realized that we really don't have a lot of folks that are familiar with what it looks like. It takes a multidisciplinary team.

If you don't catch it when in infancy or in early childhood, we see a lot of comorbidities like ADHD and those other kinds of diagnosis. You see kids getting in trouble, and then you see folks that come into our severe mental illness programs.

We see them a lot in our substance use treatment programs, and we see folks that are experiencing homelessness and a lot of other issues when they were in fact born with a developmental disability because they had unidentified neurological, central nervous, full body effects from alcohol exposure in utero.

While we recognize that it is 100% preventable, we also recognize that the conversation about alcohol in Hawaii is a really important one to have. We know that it's complicated. We know that sexual activity is complicated. We know that pregnancy is complicated. We know that reproductive rights and choice are really important.

We know that even though it is a preventable disability, it's one that's highly prevalent in our community, and so our goal in the work that we are able to do because of Act 192 and what we hope to move forward is to have those nuanced conversations, to talk a little bit more about shame and stigma, to talk about how we speak about women and pregnancy and the family systems and the health of the family systems, and our comfort in talking about alcohol use and alcohol exposure in utero.

It's really exciting to be here. We really appreciate that the Developmental Disabilities Council has been so supportive of us and we're looking at a resolution this year to continue some of the legislative efforts, but we also recognize that it's really, really important that we have a multidisciplinary, de-siloed group of folks that are working on this because it's across the lifespan.

So we're talking about pregnancy, we're talking about healthy families, we're talking about maternal health, we're talking about potential disability throughout the lifespan, we're talking about complex comorbidity. And I know that's a lot and I just said a lot of things.

And so what I really hope throughout the course of this year, maybe not while you're busy in session, is to meet with some of you individually and to talk more about where the gaps are in the screening processes, in the reality that we don't have a diagnostic clinic--we are working a little bit with JABSOM--and that how do we sort of move some of these things forward, both with our integrated community relationships and the coalition we're building, and then potentially with legislation that fills in the pieces that we may need in relationship to allocation of funding or reallocation of resources based on knowing where people really are in terms of the need because we've screened and we understand more the prevalence in Hawaii.

So I do have some data that I'd love to eventually share with you that we collected from our programs, and this is sort of just introducing myself and the coalition work that we're going to be doing over the next year with the funding that we did receive. So, mahalo.

Thank you very much. So, members, any questions? For the new members, basically we have funded a pilot project because we have found that FASD is far more implicated in a lot of disabilities and mental health than we had previously determined, and so hopefully we could get more diagnostic studies to move on with that. And Darlyn has been very good about educating me about that. Before it was an unknown subject. Okay.

I got a question.

So with this--so this understudy or under-diagnosis, what kind of gap you're looking into? Because a lot of things is popping in my head, and when I was going to school and the kids that I interact with that was in emotionally handicapped classes, even though they look normal, they had, you know, behavior problems and issues like that.

Okay, go ahead. Senator Fevella.

So we--I just ignored--not from that far back because, you know, it was just ten years ago, but anyway--how big of a gap do you think that we're lacking if we're not trying to push this to be more of what Senator was just saying to diagnose and to get these things going forward? How big of a gap do you think you'll have?

When you say gap, do you mean the difference between those who are identified and those who actually have it?

Yeah.

It's quite scary. The national prevalence data used to be 1 in 20 first graders, so about 5% of folks, which is higher than autism and all the other--that's the stat we've had for a while. They actually did a more updated one and it's closer to 7%, and that's in a general population. So special populations, so some of the data I have from the special populations, the folks that are at higher risk for other issues like homelessness and substance use, it's a lot higher.

So I don't want to misquote things, but there are studies that indicate 50 to 60% of folks that are in some of our other serving systems like our severe mental illness and substance use disorder treatment programs.

That's the reason why I ask you is when you're seeing all of this is just making me in my head, you know, like when real, I was seeing all the people that I account with in my house's population and just people that having trouble getting things done, reading, writing, those things, and you just figuring they got missed, they never get diagnosed. And then they miss opportunity, so I think this is really important.

I'm happy to schedule time and share more with you. I'll give you an email. Thank you so much for the question.

Thank you.

Thank you very much. Okay, any other questions? Okay, moving on. Responsive Caregivers of Hawaii, Michael Marsh. On Zoom. Michael, are you on Zoom?

Yes. Good morning, Madam Chair. Thank you. Can you hear me okay?

Yes.

Thank you to you and your colleagues for allowing me a few minutes to provide some remarks from the perspective of a service provider. I am the President and CEO at Responsive Caregivers of Hawaii. We're a nonprofit celebrating our 50th anniversary this year. We operate an adult daycare center in Kalaoa and we own two group homes, one in Aiea and one in Kapalama. We provide services to over 100 adults with intellectual and developmental disabilities and their families.

I'm also the President of the Hawaii Waiver Providers Association, which is a membership network of service providers throughout the entire State of Hawaii who offer similar services as Responsive Caregivers of Hawaii. Some of them have more familiar names than ours that you probably recognize, like Goodwill, Easterseals, SECOH, the ARC, etcetera.

But all of us provide services through the Medicaid Waiver 1915 Program, which, as Mary Brogan explained, allows states to use Medicaid funds to provide long-term care in a person's own home or a community setting as opposed to a long-term care facility. We support full integration of persons with intellectual and developmental disabilities in the community.

For example, Responsive Caregivers of Hawaii was instrumental decades ago in closing down the Waimano Homes Institution in favor of community integration, and that's how we obtained funding from HUD to purchase our two group homes that we currently operate and house for adults with developmental disabilities in each home.

They live there permanently with a home health aide manager and some of our older program participants in our daycare center actually were former residents of the Waimano Homes, but now they're active and integrated and visible throughout the community, which I think is much more effective and important.

We provide all sorts of activities for these folks to try to give them some joy, some meaning in their lives. We have learning activity stations on site at our daycare center that provide technology, entertainment, music and dance, arts and crafts, exercise, culinary arts, all kinds of activities which can also build soft skills that may lead to employment opportunities down the road.

We also take our folks out into the community on outings to places like the zoo, beaches, parks, the aquarium, sea life, and shopping excursions, restaurants; again, trying to build some soft skills but also giving them some joy, meaning, and opportunities in the community, and it also gives their loved ones at home a bit of a respite during the day while they're in our program. And one of the beautiful things about community integration is that it's actually less expensive than institutionalizing folks.

For example, institutional care through nursing homes and long-term facilities cost the State of Hawaii taxpayers on average $77,000 more per year than the services that we provide through the Medicaid Waiver 1915c Program, and if you include the federal match that Mary Brogan talked about, the Medicaid Waiver Program actually saves taxpayers $300 million a year when compared to institutional care. For every dollar that the state puts in in Hawaii, the Feds, through the Centers for Medicaid and Medicare, provide $1.44.

And as Mary Brogan also mentioned, I'll underscore that the Centers for Medicaid and Medicare require that the waiver covers the true cost of delivering services through the Medicaid Waiver Program.

So in addition to all of the bills that the DD Council has asked for support of, I'm also asking you to please support the full budget request by the DDD, the Developmental Disabilities Division, through the Department of Health to fund the Medicaid Waiver Program and offer the vital community services that Responsive Caregivers of Hawaii and all of the member organizations in the Hawaii Waiver Providers Association provide to these very vulnerable citizens of Hawaii. Thank you so much for your time and your ongoing support.

Thank you. Members, any questions? Okay, thank you for what you do. Okay, next up, we have Goodwill Beretania, Tracy Tamai. Tracy? Okay, come on up if you're for Goodwill.

Yes, ma'am.

Please identify yourself.

Good morning.

Good morning.

My name is Marsha Fulham. Tracy Tamai was the previous director. I am local. I've lived here through elementary, middle, high school, and college. Proud graduate of University of Hawaii and this month makes 40 years in Hawaii. I felt that was necessary because most people assume I'm military, but I'm very much a local girl.

I'm honored to speak before you today. We had a presentation board that I didn't know we couldn't have, so I'm going to have to go straight from my heart, but I've had a lot of positions in my life, but being the Director of Goodwill Hawaii by far has exceeded all of them.

I'm honored to work with Mary Brogan as well as Michael who just spoke. We are part of the HWPA, and the reason that I say this is the best job that I've ever had in my life is because every day we get to provide services to our participants who actually are excited to come.

We pick up participants and provide day program as well as we do community services. We recently--we're no longer at Beretania. We just partnered with Big Brothers Big Sisters, and we're now on 571 Quinn, and our participants are really excited to have a location that's safe and gated now.

Some of the things that we're especially proud of is our senders. We provide technology. We just purchased iPads for our participants. We teach them about daily skills, lifestyles, employment services. We do culinary skills.

So our employees, which I want to pause and say that we take pride in hiring people that are compassionate and love working with this demographic, but we have a kitchen now where now we'll be able to do on site, teaching them how to cook and prepare meals for themselves as well as doing dietary things.

We're partnering with someone at the University of Hawaii who's going to come in and do those type of things. And all of these things are possible because of the Medicaid services so I encourage you to continue to help us with that. I also want to highlight that we partner with Special Olympics.

We're also teaching them how to better themselves and talk and be a part of peer-and-peer groups. We do sexual education, which most people don't realize it, but we're dealing with adults, and a lot of them have a better dating life than myself. So I've been taking notes from them.

So I say all of that to say sometimes people treat this population as if they're different, but they're very much just like us, and so that's why this is important, because we need the funds to not only continue it with Goodwill Hawaii but other organizations that you're going to hear from today, and without this money, it wouldn't be possible for us to do what we do.

We could always use more, but we do--we are creative. I'm grateful for volunteers and people that make up for the gap that Medicaid doesn't always cover, but it was important for me today to let you know that we are impacting lives. These are real people and they're really excited to have a place that they can go to as well as be picked up or have handymen, and I hope that what I've said to you today will encourage you to continue to advocate for Medicaid services.

Okay, thank you so much. Members, any questions?

Just an observation because you already brought that up, but--I didn't think military, but anyway--going forward in putting the services, you know the people that you're talking to in this room. We 100% for the services and we're just worrying about other entities that would become involved that not going to be supportive.

I mean, I'm just, you know, hearing more and getting to learn more and I didn't realize how much broad the waiver really provides for the different people in our community, so thank you for sharing that and thank you everybody for sharing that. I appreciate it. Thank you for your service.

We're having an open-house if you want to come, Kurt. You're one of our favorites, so if you want to come, we'll send you an invitation, but I would love for you to come to see the facilities and see the creativity and the people that are passionate about what they do each day.

I'll make sure my staff get it.

Sure. Absolutely. Thank you.

Okay, thank you very much. Okay, next up we have Lanakila Bachelot ADH. Leisel Alinsulurin? Okay. Just identify yourselves. Speak into the mic.

Okay. Can you hear me? Okay, very good. Aloha, everyone. My name is Bryan Polason--

And I'm Mahina Okimoto.

And we are from Lanakila Pacific Disability Services.

And we would like to share about Lanakila Pacific and a little about of our experience with you.

As you know, Lanakila Pacific, it all first started in 1939 by Violet Kam, the founder of Lanakila Crafts, where it served for those recovering from tuberculosis. Lanakila Pacific currently has Meals on Wheels, Kitchen, Adopting Health, Employment Services, Grounds, Custom Products, and our Main Office. Each of our services help individuals build independence.

Meals on Wheels is a program that serves meals to homebound kupuna in the community. They serve approximately over 3,000 meals and Lanakila Kitchen serves over 1,150 meals a day, and they train individuals with disabilities on how to cook, wash and dry dishes, and serve meals to the community.

Adopting Health is a program that helps those with higher disabilities learn life skills like arts and crafts, cooking, math, and fun and games. They also go on community trips and our Employment Services Department first started as a disability services program back in 1992.

Our services help individuals with disabilities find jobs, learn new job skills, communication skills, including peers, for both personal and professional lives. Grounds is a program where they train individuals on maintenance, janitorial, and other outdoor work.

Similar to Lanakila Kitchen, they help individuals build independence by employing them. Custom Products first opened in 2010 where they print shirts and bags for various schools and companies. They help individuals by training them on tasks.

We train our Employment Services clients on how to sort printed items by sizes, cut rags, and how to manually print on shirts or bags. And lastly, our Main Office is responsible for making all of this happen. As a past participant of Employment Services, I can advocate my experiences in training at Custom Products, Main Office, and Meals on Wheels.

I try to inspire new and incoming participants to keep trying and never give up. As stated previously, I am the admin assistant. I am proud to fulfill my dream to use my skills that I learned, love the job that I do, and love the team that I work with.

And I have been working with Lanakila Pacific for the past several years now, since 2017. I started originally as a cashier at Hale Ina, but now I'm a job coach at Bachelot. Over time, I became familiar with our vision statement that touches on being empowered to find meaningful employment, living independently, and thriving in spirit.

I think we can, or at least most of us here can understand how difficult that is to find meaningful employment, and as a job coach, I try to figure out what my participants think meaningful employment is to them by connecting with them and figuring out how they learn. So with that being said, we also--sorry--we also have our annual graduation ceremony coming up on Thursday, January 30, 2025.

We have 33 participants placed in jobs this year in the year of 2024 and nearly half of those participants has passed their 90-day probationary period, and the job retention rate is at 92%.

If you're interested in gaining skills, looking for a job for the first time, or want to do hands-on training, Employment Services at Lanakila Pacific is the way to go.

In the last year, our workforce department merged with Employment Services, forming Employment Service as one department. Now the staff members have increased to 12 and we recently partnered with new locations such as Rehab Cafe and Hawaii Central Federal Credit Union.

And for the first time in Employment Services' history, we are expanding, and we recently hired a new ES specialist who currently resides on the North Shore where she takes care of all our participants living in the Windward and North Shore areas.

We try to empower our participants by teaching them things such as decision-making skills, thus enabling them to confidently make their own decisions most of the time.

So we ask that you continue to support companies like Lanakila Pacific and our mission to help build independence for those with disabilities.

All right, thank you very much. Members, any questions?

How long did you say you working with Lanakila?

Well, Senator Fevella, I've been in Lanakila for two and a half now, going on three years at Lanakila. Yeah, May 31st is my third-year anniversary.

Oh, very impressive. Thank you. Thank you guys. Appreciate it.

Ninety percent--great. Terrific. Good job. Thank you very much. Okay, next up we have United Cerebral Palsy Association of Hawaii, Stephen Dantzig. Stephen Dantzig, are you on Zoom? I don't think so. Oh, there he is. Steven? Okay, you need to unmute yourself. There you go.

Okay, I am unmuted.

Got it. We can hear you now.

Okay, thank you. First of all, thank you for having me. I'm proud to be here. I'm looking forward to working with all you guys in the next few years. My name is Steven Danzig, and I'm a new Outreach and Education Program Manager for CP Hawaii.

And I actually, I was a client of UCP 60 years ago. So now having a chance to kind of go full circle and get back. I'll be brief because I know we're short on time today. What we do, mostly--not mostly--but our big emphasis for CP is early intervention.

So this year I believe we'll be working with about 600 kids up to age three, providing speech language, physical therapies, occupational therapies, special education services, and general care coordination, and then assisting them to transition to DOE if appropriate.

What we've also begun to look at this year is kind of more of a personal project that's gaining ground and that is looking at how cerebral palsy impacts people who age because there is a--basically cerebral palsy is caused by damage to the other brain and that damage itself is non-progressive.

However, we are learning, and there's more and more research that shows that as you age, the physical components, the muscle spasticity, the lack of balance, the difficulty communicating, etcetera, those tend to increase, and I can tell you personally that 20 years ago, I was using two canes. Now I'm using a walker or a power wheelchair to get around.

So we want to look at not only continuing the really important work with the kids, the earlier we bring, the better, but also I share a lot of the concerns voiced today about finding people in Hawaii who need our services, all of our services.

So we're going to be looking at trying to find older adults with cerebral palsy and begin to identify more clearly their needs as they grow, in addition to, of course, working with the kids. On a quick personal note, I mentioned that I'm using a power wheelchair nowadays, and I want to thank all of you at the, at, at the, at the Legislature, making sure that Mauna Kea in particular is accessible because I'm able to get around town in my power scooter without any difficulties at all.

So thank you for your support in terms of, of, of, you know, curb cuts, etcetera, and making Hawaii as accessible as it can be. So in closing, I would echo the requests that I've heard today and that you folks continue to do the amazing job you're doing for our kids and our clientele.

And then a lot of the agencies today, we're focused on adults, which we wouldn't do, but I also want to throw in a desire to look more at adults with CP as well. So thank you.

Okay. Thank you so much. Any questions for Stephen Dantzig? Okay. Seeing none, these folks have anybody else? Okay. If not, we are going to be adjourned, but before we go, I just want to thank everyone who has been present.

I know that you folks have faced barriers coming into the State Capitol, especially with a broken elevator, and we hope you folks could come on the opening session next week. First time since COVID that we're going to be fully open, and I'm proud that my new colleagues to the HHS are present here to know about what you folks are going through. Thank you very much, and we are adjourned.