[0:01] Well, I guess we'll

[0:03] get started here.

[0:05] Uh, this is the

[0:06] civil judiciary

[0:08] interim

[0:09] study.

[0:11] Dealing with

[0:12] supported

[0:14] decision making in

[0:15] Oklahoma.

[0:16] First off, I'd like to thank

[0:18] everybody for being here

[0:19] today.

[0:21] If any of the

[0:22] speakers before you

[0:24] speak, please introduce

[0:25] yourselves.

[0:27] And tell

[0:28] us a little bit about you and go

[0:30] from there. At this

[0:32] time, I'm gonna turn the

[0:33] meeting over to

[0:34] Representative

[0:35] Hefner,

[0:36] who put this

[0:38] study together

[0:39] and we're

[0:40] all here to hopefully

[0:42] learn something

[0:43] and that will help

[0:45] the state of Oklahoma.

[0:46] So Representative

[0:47] Hefner, it's your

[0:49] show.

[0:51] >> Thank you thank you so

[0:52] much, uh, Vice Chairman Culver.

[0:54] I, I wanna thank you and Chairman

[0:55] Je uh

[0:57] for uh having

[0:58] this uh presentation.

[1:00] It's something that we talked about

[1:02] I think last year the year

[1:03] before and, uh

[1:05] there are a lot of questions about it so I'm

[1:06] really happy that we can dig into it a

[1:08] little bit more. Um, I'd

[1:09] also like to thank, uh, my colleagues

[1:11] for being here as well, uh the

[1:12] presenters, um,

[1:14] house staff and of course my

[1:16] legislative assistant

[1:16] Chelsea,

[1:18] um.

[1:19] This, uh, presentation on

[1:21] support decision making is

[1:22] not spoke about as

[1:24] widely as guardianship,

[1:26] uh, for families raising a child with a

[1:27] disability, guardianship

[1:29] is often one of the first

[1:30] options we are told to

[1:32] consider. Um,

[1:33] I think I was, I

[1:35] was,

[1:36] someone told me about it with my

[1:38] son William when he was like 3 or

[1:39] 4. And it

[1:41] stays in your head and

[1:42] it um it's something that we

[1:43] always question ourselves about if

[1:45] it's if it's time or if

[1:46] it's not or if it's something

[1:47] right until I started

[1:49] hearing about supported decision

[1:50] making,

[1:51] um.

[1:53] It's usually used to as

[1:54] a form of protection that

[1:56] people talk about guardianship and

[1:57] I understand that

[1:59] but sometimes those decisions

[2:01] are made way earlier

[2:02] than may be needed,

[2:04] um.

[2:05] As my son got older, um,

[2:07] he had his own ideas,

[2:08] and you'll get to hear later

[2:10] maybe some of what those

[2:11] ideas. I asked

[2:13] forgiveness before I do not

[2:14] know what he's going to say,

[2:16] and he does like to tease me, so

[2:17] we'll see, we'll

[2:18] see.

[2:19] Um, supported

[2:21] decision making may not be right for

[2:22] everyone and guardianship

[2:24] may not be right for everyone

[2:26] either.

[2:27] So today we'll hear

[2:29] from, um, another student and

[2:30] my son William about it. They have something

[2:32] called Circle of Care.

[2:33] He's at the Opportunity Orange

[2:35] Scholars program at Oklahoma

[2:36] State University

[2:38] and, uh, they do something

[2:39] similar to this, uh,

[2:41] supported decision making they call it circle

[2:43] of care. so they're gonna talk

[2:44] about that,

[2:45] um.

[2:47] And you know my mom, my job

[2:48] is his mom, you know, whatever

[2:50] he says is to help

[2:51] find that legal frame what the,

[2:53] what are those supports for

[2:54] him in protecting

[2:55] both his safety and his

[2:57] rights. Um, you're going to

[2:59] hear the term least

[3:00] restrictive in in

[3:01] very basic terms that means giving

[3:03] a person. The support

[3:04] they need without taking away

[3:06] rights, they're

[3:07] still able to exercise.

[3:09] So, like again, I'm not saying

[3:11] guardianship is never

[3:12] necessary for some people and in some

[3:14] circumstances

[3:16] it is

[3:17] important. The question

[3:18] is whether full guardianship

[3:20] should always be the starting point,

[3:22] which was told to me when

[3:23] he was my son was young,

[3:25] um, and then going with the less

[3:27] restrictive option

[3:28] which may allow a person to remain

[3:30] safe while keeping more control

[3:31] over his or her own

[3:32] life.

[3:34] Um

[3:36] So anyway, today I hope that we can learn from

[3:37] our presenters and hear how

[3:39] supported decision making works in real

[3:41] life. Um, I

[3:42] encourage those of you to ask

[3:44] questions that are here. thank you.

[3:45] um and uh

[3:47] uh thanks again, uh,

[3:48] chairman and vice chair

[3:50] and uh let's start with our

[3:51] first presenter.

[3:53] Um, please

[3:54] introduce yourself, uh,

[3:56] Brian, and, uh,

[3:57] give us a little information about where

[3:59] you work and then, uh,

[4:00] please Ready for

[4:02] your presentation. >> Absolutely, thank

[4:03] you. Good afternoon, everyone, and I

[4:05] appreciate you being here and I appreciate

[4:06] you having me here.

[4:08] Um, spoken a

[4:10] couple of times with Representative

[4:11] Hefner during the disability caucus

[4:13] meetings over the summer and the last

[4:14] legislative session.

[4:16] Um, so I was very

[4:17] happy to be asked back again.

[4:19] My name is Brian Wilkerson.

[4:21] Uh, I am an attorney and

[4:22] the legal director at Disability

[4:23] Rights Oklahoma, which is

[4:25] the designated protection and

[4:26] advocacy firm for the state of

[4:28] Oklahoma. Um,

[4:29] we are federally funded

[4:31] to, um, protect,

[4:32] advocate for, and when

[4:34] necessary, legally advocate

[4:35] for, um,

[4:36] individuals, uh, throughout the

[4:38] state, all 77 counties

[4:39] free of charge, uh, who have

[4:41] a disability and have a qualifying,

[4:43] um, issue that falls

[4:44] within our priorities,

[4:46] um, and objectives that are set by

[4:48] our board each year.

[4:49] Uh, I've been with the

[4:51] organization for, uh, a

[4:53] little over 8 years now,

[4:54] and, uh, I'm very happy

[4:56] to be here. A little bit

[4:57] personally that we will probably get

[4:59] into from a way of maybe

[5:00] answering questions or examples

[5:01] later. Uh,

[5:03] I have, uh,

[5:05] almost 28 year old son now, he'll be

[5:06] 28 next month,

[5:08] uh, who my family, my

[5:09] wife and I have a full guardianship

[5:10] over. And I have a

[5:12] daughter who will be turning

[5:13] 27 this year,

[5:15] uh, sorry, turning 26

[5:16] this year, uh,

[5:18] who, uh,

[5:19] something, uh, like a

[5:20] supported decision-making arrangement,

[5:22] um, would have really benefited her

[5:24] when she was, uh, younger,

[5:26] uh, up until extremely recently

[5:27] in her life, which we can

[5:29] discuss later.

[5:30] My job here today is simply

[5:32] just to educate. Um, I've

[5:33] been asked to kind of talk about

[5:35] the framework of what

[5:36] laws we do have in place,

[5:38] um, to assist people with

[5:39] disabilities or challenges

[5:41] in their decision making,

[5:42] um, the framework of those

[5:44] laws, uh, how

[5:45] supported decision making may fit

[5:47] into that and,

[5:48] uh, what within Oklahoma

[5:50] statute right now either

[5:51] defines or

[5:53] provides scope for

[5:54] supported decision making.

[5:56] So

[6:01] I don't know which way I'm

[6:03] supposed to be pointing this or if it's

[6:04] on.

[6:07] All right. Is that if I

[6:09] tell you next slide, can you advance

[6:10] it?

[6:12] And quite honestly, I

[6:14] don't like to be tied to the slides, but

[6:15] it is something that you guys can

[6:17] look at.

[6:19] Yeah, perfect.

[6:20] So within the state of Oklahoma

[6:22] statutory framework right

[6:23] now, the concept of

[6:25] supported decision making already

[6:26] exists and has for some

[6:27] time. Uh, there are

[6:29] two primary references

[6:31] to supported decision making in the

[6:32] statutes. One is within

[6:34] Title 30, which are

[6:35] guardianship

[6:36] statutes.

[6:37] And it's referenced in the

[6:39] definitional section as

[6:40] a uh

[6:42] least restrictive

[6:43] alternative to a

[6:44] guardianship. something that the

[6:46] court can consider

[6:47] short of either entering a

[6:49] limited guardianship or a full

[6:50] guardianship, uh, when that is

[6:52] being requested to be placed over

[6:53] an individual.

[6:54] Um, the other reference

[6:56] point, um, that

[6:58] exists in the Oklahoma statutes right

[6:59] now is in Title

[7:00] 63 under the health

[7:01] statutes. Uh, and

[7:03] it specifically deals with

[7:04] Everett's law. If those of you

[7:06] are familiar with, uh,

[7:08] anyone's familiar with Everett's law,

[7:09] it basically is

[7:11] a, a non-discriminatory

[7:12] section of the organ donor

[7:14] or organ transplant

[7:15] law, um, that,

[7:17] um, places

[7:18] restrictions on

[7:20] any type of discrimination

[7:21] based upon an individual's

[7:23] disability in either

[7:24] receiving an organ

[7:25] transplant or potentially choosing to

[7:27] donate an organ.

[7:28] And again, it's referenced

[7:30] that an individual in the

[7:31] definitional section of that

[7:33] statute, it's referenced

[7:34] that an individual can use

[7:35] the support of a supported

[7:37] decision maker or a supported

[7:39] decision making agreement

[7:40] and specifically in

[7:41] the

[7:43] the

[7:44] implementation section

[7:45] that follows that. It

[7:47] talks about that an individual with a

[7:48] disability cannot be discriminated

[7:50] against when considering

[7:52] organ transplant,

[7:53] uh, or organ

[7:54] donation, uh,

[7:56] because they use, because they

[7:57] rely on a supporter

[7:59] or someone in a supported

[8:00] decision-making arrangement or

[8:02] guardianship or

[8:03] otherwise.

[8:05] The issue as we'll

[8:06] see, um,

[8:09] From a statutory framework

[8:10] is that although supported

[8:12] decision making is referenced in

[8:13] the statutes.

[8:15] There is no other framework

[8:17] or guidance with regard to

[8:19] what a supported decision making

[8:20] arrangement is, what it

[8:21] should look like, and, and,

[8:23] um, very importantly,

[8:24] as we'll discuss, I think,

[8:26] uh, in a few minutes,

[8:27] um, how,

[8:29] uh, third parties

[8:31] can feel comfortable in relying on them

[8:32] or even recognizing

[8:33] them.

[8:36] So when you talk about,

[8:37] thank you, when you talk about if we

[8:38] could go, yeah, if we could

[8:40] talk about least restrictive alternatives

[8:42] in the guardianship law

[8:43] again, supported

[8:45] decision making is referenced in the

[8:46] definitional section,

[8:48] but, uh and it,

[8:50] it just discusses that

[8:51] uh it's in a, you can have

[8:53] supported decision making,

[8:55] you can have an appropriate

[8:56] technological assistance.

[8:58] Um, representative payee

[9:00] in the context of the, uh,

[9:01] federal Social Security

[9:03] program or an agent that

[9:04] could be appointed, um, by

[9:06] an individual through a power of

[9:07] attorney to

[9:08] help them with their

[9:10] finances or their healthcare. Those

[9:11] are all, uh,

[9:13] alternatives to,

[9:15] um, entering into a

[9:16] guardianship, limited or

[9:18] otherwise.

[9:19] The problem, uh,

[9:20] potentially with the way the Oklahoma

[9:22] statutory framework is right

[9:23] now is there's no

[9:25] guidance for a court to

[9:26] know what to do if they were going to

[9:28] choose,

[9:29] um, as a least

[9:30] restrictive, uh, alternative

[9:32] supported decision making.

[9:34] For instance, if, uh, if

[9:35] someone came in to,

[9:37] um, seek a guardianship

[9:38] over one of their adult

[9:39] child, uh, someone who was on the cusp

[9:41] of turning 18, they want to

[9:42] get that guardianship in place to

[9:44] protect them

[9:45] and Um,

[9:47] the potential award

[9:48] either through their attorney or

[9:50] themselves, um,

[9:51] questioned the fact of whether they needed

[9:53] a full guardianship.

[9:55] Uh, if they were to propose

[9:56] the idea of,

[9:58] um, maybe a power of attorney,

[10:00] hey, I might need some help with my

[10:01] my, um, financial

[10:03] or medical

[10:04] decisions, but in every other

[10:06] respect of my life I can make my own

[10:07] decisions. I feel that I can do that.

[10:09] The court has a statutory

[10:10] framework to look at that

[10:12] in our,

[10:13] um.

[10:15] In our statutes regarding

[10:17] power of attorney, not only

[10:18] is it defined what a power of attorney

[10:20] is, who can rely

[10:21] on that power of attorney,

[10:23] how they are, um,

[10:24] entered into and how they can

[10:26] be, um,

[10:27] extinguished or closed out,

[10:29] um,

[10:30] and. Even

[10:32] a a guidance

[10:33] framework or a model,

[10:35] uh, power of attorney form

[10:36] is included within the statutes

[10:38] for people to use as a basis

[10:39] of of what

[10:41] can be used to set up a power of

[10:42] attorney and as

[10:43] importantly over the years that we've

[10:45] had many years that we've had power

[10:46] of attorney as a an

[10:48] alternative to

[10:49] guardianship.

[10:51] Doctors' offices, banks,

[10:53] um, provide

[10:55] housing providers are

[10:56] used to seeing a power of attorney

[10:57] form. When you hand someone a power of

[10:59] attorney form, generally

[11:00] speaking, if they look and it appears to

[11:02] be in, in, in

[11:03] form or substance close to

[11:05] what they're used to seeing,

[11:06] uh, pursuant to the statutory

[11:08] framework, it's signed

[11:09] appropriately, the boxes are

[11:11] checked. Most institutions,

[11:12] most third parties know

[11:14] that they can rely on that,

[11:16] um, because.

[11:17] It's established.

[11:19] It's established through statute.

[11:20] Um, you can read it in black and white,

[11:22] you can see what it looks like, and it's

[11:23] established practice. It's taken

[11:25] time for people to

[11:26] understand what they are and know that they are

[11:28] not only can be relied on, but it's

[11:29] something that is often used

[11:31] in daily life of of

[11:32] citizens across our

[11:33] state.

[11:35] However, if you were

[11:36] to, same scenario,

[11:38] have that potential award,

[11:40] that individual with the disability

[11:41] asking the court, hey, really what I'd

[11:43] like to do is I'd like to choose

[11:44] my own person that

[11:46] I rely on for decisions. I wanna

[11:47] choose my supporter and the

[11:49] statute even says I can have

[11:50] a supported decision-making

[11:52] arrangement. Uh, you can,

[11:53] you can order that

[11:55] court. Um, that's something that

[11:56] you can do.

[11:58] I can tell you as an

[11:59] attorney who's practised both in

[12:01] criminal law and civil law,

[12:02] civil law for over 30 years

[12:04] now in the state of Oklahoma,

[12:05] judges are

[12:06] often

[12:09] Loath to

[12:10] do.

[12:12] Or enter into agreements for

[12:13] something that they're, they don't have a statutory

[12:15] basis um to look

[12:16] at and to hang

[12:18] their hat on.

[12:20] And without a framework

[12:21] for supported decision

[12:22] making.

[12:23] It's basically

[12:25] a reference to a definitional

[12:27] statute without being able,

[12:29] without the court being able to look at

[12:30] it and say, OK, well, what this

[12:32] means is this

[12:33] person gets to choose

[12:35] they want to support them. There's a written

[12:36] form and document that

[12:38] goes along with that, that can be

[12:39] presented to the bank

[12:41] or to the

[12:42] uh medical provider,

[12:44] um, or to the housing provider

[12:45] or uh whatever

[12:47] third party that might be that they need

[12:48] some assistance with those decisions

[12:50] and. And there are

[12:51] some guardrails that go along

[12:53] with that pursuant to the statute

[12:55] that talk about

[12:56] ways to ways and

[12:58] requirements to report if it looks

[12:59] like that relationship is

[13:01] being abused.

[13:02] It leaves the decision

[13:04] making process with the

[13:05] individual, but allows

[13:07] the individual to have someone there

[13:08] at every step of the way

[13:10] to receive that information

[13:11] that normally might be protected

[13:13] under HIPAA, uh,

[13:14] to receive that information that

[13:16] normally might be protected because of

[13:17] Social

[13:18] Security.

[13:24] Social Social Security rules

[13:25] or otherwise,

[13:26] um, and

[13:27] so the fact

[13:29] that it exists as in the

[13:30] definitional sections

[13:32] within a guardianship,

[13:33] um, there's still a lot of

[13:35] question about whether or not a court would

[13:36] support that, uh, and whether

[13:38] or not, um, the

[13:39] court would have the framework

[13:41] necessary in this within the

[13:42] statute to design that

[13:44] properly to protect both that

[13:45] individual and, um,

[13:47] uh, the requirements for which the

[13:48] guardianship in this case potentially

[13:50] was sought for in the first

[13:51] place.

[13:55] The statutory definition,

[13:57] again, we talked about a little bit. It

[13:59] just says supported decision making

[14:00] means assistance from one or more

[14:02] persons chosen by an individual

[14:03] in understanding the nature and

[14:05] consequences of

[14:06] potential personal and financial

[14:07] decisions and to enable that

[14:09] individual to make such decisions

[14:11] and in communicating such

[14:13] decisions if consistent with the wishes

[14:14] of the individual.

[14:16] It's designed to

[14:18] be a supporter that's

[14:19] chosen by the individual, not

[14:21] chosen by the court, and

[14:23] not chosen by the person

[14:24] in the case of our

[14:25] scenario where we're in

[14:26] guardianship court already,

[14:28] um, where the potential guardian

[14:30] has chosen that person, whether it

[14:31] be themselves or another,

[14:32] another person,

[14:34] um. The role is

[14:35] to assist in the understanding and

[14:37] communication of

[14:38] their needs,

[14:40] understanding what they're being told to

[14:41] process information about what their medical

[14:43] care services

[14:45] might be, what a

[14:46] diagnosis might be, what

[14:47] potential options for a diagnosis

[14:49] might be in the,

[14:50] in the realm of financial, do

[14:52] you want a checking account?

[14:53] Do you just need a savings account?

[14:55] If you're an individual with disability,

[14:57] do you need an AB account to

[14:58] protect those funds for the future?

[15:00] Um, all of those types of decisions

[15:02] are something that the individual may be

[15:03] able to engage in

[15:05] and ultimately decide on their

[15:06] own under a supported,

[15:08] uh, decision-making

[15:09] agreement but need

[15:10] that assistance.

[15:11] Um, but the,

[15:13] the is that the

[15:15] individual is still left with that

[15:16] decision-making power.

[15:18] Um, whereas as we'll discuss in

[15:19] a guardianship,

[15:20] um,

[15:22] the, a guardianship takes

[15:23] away that ability or that right.

[15:25] And the other important thing to

[15:27] note about the difference

[15:28] between supported decision

[15:30] making and guardianships

[15:31] as they currently stand in our

[15:32] statutes. Under

[15:34] a guardianship, there was always

[15:35] also the um what

[15:37] is potentially seen as stigma

[15:39] to enter into a guardianship, a

[15:40] court must first find that the

[15:42] individual for whom that guardianship

[15:44] is going to be over lacks

[15:45] capacity in some way,

[15:47] is incapacitated to make their

[15:48] own decisions from a legal

[15:49] standpoint. And that

[15:51] finding is, is permanent

[15:52] unless or until that guardianship

[15:54] gets either um

[15:55] modified or

[15:56] dismissed. And in

[15:58] Oklahoma, once those

[15:59] guardianships are in place,

[16:01] we do have mechanisms under

[16:02] the statute to have them

[16:04] either removed or modified,

[16:06] um, but it is often very

[16:07] difficult, very time

[16:08] consuming, uh,

[16:10] and expensive,

[16:12] um, for an individual

[16:13] to have that

[16:14] done.

[16:16] With regard to

[16:17] supported decision

[16:18] making.

[16:20] There is no finding of

[16:21] incapacity.

[16:22] It's a, it's an

[16:23] acknowledgement

[16:25] by the state from a statutory

[16:27] standpoint that there are

[16:28] individuals living with disabilities

[16:30] in our state that

[16:31] have the capacity to

[16:33] ultimately make their own

[16:34] decisions, but they may need

[16:35] more support

[16:37] than those of us

[16:39] that are living without disabilities in

[16:40] the state.

[16:42] It's basically the promise

[16:43] that the ADA gave

[16:44] that reasonable

[16:46] accommodations.

[16:47] In all steps of

[16:49] life should

[16:50] be provided to

[16:52] individuals with disabilities.

[16:54] No, I always like to reference it

[16:55] or look at it like it's

[16:57] always a matter in my mind

[16:58] of leveling the playing

[17:00] field, making sure

[17:01] that everyone has a fair shake

[17:02] and a fair shot

[17:04] at making the decisions

[17:05] and choices about their own life

[17:07] that they want to. Um,

[17:08] and if they need that

[17:10] assistance, I see that

[17:11] as a reasonable accommodation. I

[17:13] see supported decision making

[17:14] as directly in line with,

[17:16] um, the promise of the

[17:17] ADA for,

[17:19] um, accommodations

[17:20] and supports, um, that

[17:22] might be necessary.

[17:23] For them to be able for individuals to

[17:25] be able to participate fully

[17:27] uh in the panoply of decisions

[17:28] of life that we make,

[17:30] um, with

[17:31] that help and

[17:32] support.

[17:35] I think we're

[17:37] Again, we talked about Everett's

[17:38] law already, um, a little

[17:39] bit again, the supported

[17:41] decision making component of that is

[17:43] exactly as we've described.

[17:44] Um, we already have

[17:46] in place in that very

[17:47] limited in

[17:49] that very limited circumstance

[17:50] and statute of organ

[17:51] donation,

[17:52] um.

[17:54] Uh, language

[17:56] that talks about not

[17:57] discriminated against someone just

[17:58] because they've chosen to have

[18:00] or have chosen to rely on a

[18:02] supported decision maker and

[18:03] that that is something that

[18:05] a third party in this case the

[18:06] medical field dealing again

[18:08] in that very limited circumstance,

[18:10] um, uh, to a certain

[18:11] degree can rely on.

[18:13] Um, the next

[18:14] one, next slide

[18:15] please.

[18:17] So the different tools that

[18:19] we have in our toolbox

[18:20] for to help with this

[18:22] decision making um

[18:23] require different questions and there's

[18:25] different ways to look at

[18:26] them.

[18:27] The biggest questions are who's

[18:29] gonna be making the decision under

[18:31] whatever type of arrangement it might

[18:32] be. What

[18:33] decisions are covered,

[18:35] um, and again, we've talked

[18:36] about kind of some of the big ones that we

[18:38] usually think about are,

[18:39] are issues that we all deal with

[18:41] in our personal lives,

[18:42] healthcare, finances, federal

[18:44] benefits, um, and

[18:45] other areas that we could

[18:46] define. Um,

[18:48] one of them I think higher

[18:49] education, I think specifically.

[18:51] Um, comes into play and,

[18:53] and certainly an example again, if

[18:54] we, we

[18:56] look for examples later, I could, I

[18:57] could give some examples of

[18:58] that. How

[19:00] was that authority

[19:01] created? And

[19:02] who provides the oversight

[19:04] for that arrangement.

[19:05] So if you go to the next slide, please.

[19:07] So when you look at the tool,

[19:09] um, if you look at guardianship at the

[19:10] bottom of that slide.

[19:12] Who decides, it depends on the court.

[19:14] The court makes that decision

[19:15] about um whether or

[19:17] not that's going to be a full guardianship.

[19:18] Do they make a decision that an

[19:20] individual lacks all capacity

[19:22] to make any decisions about their

[19:23] life, um, and

[19:25] that, that, that power should be

[19:26] rested within someone else.

[19:28] And then who may take that,

[19:29] who may take that legal action,

[19:31] uh, would be the guardian

[19:33] ultimately if a guardianship,

[19:34] uh, was in fact put in

[19:35] place and they may act

[19:37] only within the powers assigned

[19:38] by the court, but generally speaking, and

[19:40] as, as we've seen.

[19:41] Um, often in

[19:43] Oklahoma courts, um,

[19:44] guard the general guardianship is kind

[19:46] of the default. the guardianship whereby

[19:47] all decision making is removed

[19:49] from the individual, um,

[19:51] and that rests with another

[19:52] person.

[19:54] If you look at the power of

[19:55] attorney, again, we

[19:57] have statutes that talk about power of

[19:58] attorney. um the

[20:00] person who decides that

[20:01] is the individual um

[20:03] ultimately retains the authority.

[20:04] but again with the power of

[20:05] attorney. At some

[20:07] point, the reason that it comes

[20:09] into play is when an

[20:10] individual oftentimes

[20:12] absent the circumstance of when

[20:13] they are um

[20:15] physically unable and we think

[20:16] about that oftentimes in the military

[20:18] context,

[20:20] uh, lots of

[20:22] people serving our country will

[20:23] get a power of attorney that

[20:25] may have something to do with either the

[20:26] education of their children or healthcare for

[20:28] their children if they get

[20:29] deployed overseas and aren't

[20:30] readily available to make those

[20:32] decisions. we see that a lot.

[20:34] Um, where they have placed

[20:35] either a, a trusted,

[20:36] uh, family member or a

[20:38] trusted friend, uh,

[20:40] with that power of attorney. But

[20:41] generally speaking, power of attorneys,

[20:42] especially in the medical context,

[20:44] uh, and in the financial

[20:46] context,

[20:47] ultimately deal again with looking

[20:48] at has the individual

[20:50] been determined either permanently

[20:51] or temporarily,

[20:53] uh, to have lost capacity

[20:54] to make that decision. So

[20:56] again, we have that, that issue of

[20:57] capacity, um, and,

[20:59] and someone having to determine

[21:01] that I as

[21:02] an individual no longer have

[21:04] the right or the ability to

[21:05] make that choice for myself and

[21:07] so this document comes into

[21:08] play where someone else is

[21:09] allowed to make that decision.

[21:11] Um, and then we look at

[21:13] supported decision making.

[21:14] In supported decision making,

[21:15] the individual, uh,

[21:17] is the person,

[21:18] uh, who is

[21:20] making the ultimately making the

[21:21] decisions. And

[21:23] the person who ultimately can take

[21:25] that legal action is

[21:26] the individual. Um,

[21:27] the supporter is allowed

[21:29] and required, uh,

[21:30] to assist, uh,

[21:32] but needs separate authority to

[21:33] act. And if they have

[21:35] separate authority to

[21:36] act independently of the individual,

[21:38] again, we'd be looking at either a power of

[21:39] attorney or a guardianship or something

[21:41] of that.

[21:43] go to the next slide,

[21:44] please.

[21:46] Next thing, the question that we ask

[21:48] is how does authority begin or

[21:49] end? Again, under supported

[21:51] decision making, the individual chooses

[21:52] to enter into that arrangement. They

[21:54] pick the person or individual

[21:55] or individuals that they want to be

[21:57] their supporters.

[21:58] Um, and

[22:00] the individual, uh, has

[22:01] the right to stop using

[22:03] that support.

[22:04] Um,

[22:05] however, that's

[22:06] not clearly defined in our statutes

[22:08] right now. If you look at those

[22:09] two. Um,

[22:11] statutes that I referenced earlier, the

[22:12] Title 30 guardianship definitional

[22:14] statutes and

[22:15] Title 63 under Everett's

[22:17] law, again in the definitional

[22:18] statutes there are

[22:20] no

[22:21] guidelines, there are

[22:22] no, um,

[22:23] restrictions or,

[22:25] um, instructions

[22:26] basically. Within our

[22:28] current statutory framework,

[22:30] um, to,

[22:31] um, provide guidance on

[22:33] an individual or a family

[22:35] that wanted to, uh

[22:36] utilize the disorder,

[22:38] sorry, the supported decision making

[22:39] arrangement as a least

[22:41] restrictive alternative to

[22:42] something like a power of attorney or a

[22:44] guardianship.

[22:46] Um, again

[22:48] we've talked about it, the power of

[22:49] attorney and the individual,

[22:51] um, we're

[22:52] talking about whether or not a

[22:54] third party, uh, comes

[22:55] in seeking that guardianship and the court

[22:57] ultimately orders that guardianship,

[22:59] uh, or the power of attorney where we

[23:00] still have situations where in

[23:02] most cases there has to be

[23:03] a finding of incapacity of the

[23:05] individual for that authority

[23:06] to kick in and once

[23:08] it does that decision making is

[23:09] taken away from that

[23:11] individual.

[23:13] Next slide,

[23:13] please.

[23:16] We do have under our guardianship

[23:17] statutes um two

[23:19] alternatives. We have a

[23:20] general guardianship that we've discussed

[23:21] which basically takes fines

[23:23] uh that

[23:24] the individual

[23:26] over whom the guardianship is to be

[23:27] placed lacks all capacity to

[23:29] make any decisions

[23:30] on their own behalf

[23:32] and then we have a limited guardianship

[23:34] those are used far less

[23:35] often in Oklahoma but they

[23:37] are a tool. Uh,

[23:39] within the guardianship toolbox

[23:40] and generally a limited guardianship

[23:42] would be,

[23:43] um, they

[23:44] usually go one of two ways.

[23:46] Oftentimes someone may

[23:47] need assistance

[23:48] with their medical decisions

[23:50] and medical care, but

[23:51] in all other respects

[23:53] they can find their own home or

[23:54] apartment, enter into a

[23:56] lease, understand that, um,

[23:58] and maybe use informal

[23:59] support to do that, um,

[24:00] but legally retain the

[24:02] capacity to do that and handle their

[24:03] finances and

[24:05] sometimes it's just the opposite.

[24:06] Sometimes, hey. I,

[24:08] I,

[24:09] I, I understand my long term medical

[24:11] conditions. I understand how to talk to my

[24:12] doctor. I'm comfortable doing

[24:13] that, um, but I really

[24:15] want some help with my finances. It's

[24:16] very confusing. I

[24:18] don't, you know, I know that my rent's

[24:19] due every month, um, but I

[24:21] don't know exactly how that

[24:22] money's coming out of my Social

[24:23] Security. What will I

[24:25] have left over

[24:26] afterwards? what can I use it

[24:28] on? And so sometimes we

[24:29] see a limited guardianship or

[24:30] someone, uh, an

[24:32] individual needs

[24:33] assistance with one

[24:35] of those issues but

[24:36] again. Whether

[24:37] it's the medical side or

[24:39] the um

[24:41] financial side,

[24:42] all of that decision

[24:44] making authority actually rests

[24:45] with another individual who's been

[24:47] appointed as the guardian.

[24:48] And so not only is that

[24:50] individual who's under the limit

[24:51] guardianship, um, getting

[24:53] that assistance, but

[24:54] when their viewpoints

[24:55] differ, uh, when

[24:57] that decision by the individual

[24:59] would be something different than the

[25:00] guardian would make

[25:02] the guardian's decision trumps and

[25:03] they're allowed to make that decision

[25:05] even over the objection of the

[25:06] individual under who

[25:08] who's under the limited

[25:09] guardianship.

[25:13] Uh, next slide, yeah, thank

[25:14] you.

[25:16] so this is, uh, we've kind

[25:17] of talked about this again already. That's

[25:19] why I don't like to be tied to the

[25:20] slides, um, but under

[25:21] power of attorney, the individual

[25:23] authorized the agent to act in

[25:24] specific matters

[25:25] and, uh.

[25:28] There the document and the

[25:29] governing laws which we do have on

[25:30] the books we do have

[25:32] um that framework

[25:34] for powers of

[25:35] attorney in the state of Oklahoma

[25:36] in our statutes

[25:38] representative payee that's

[25:39] uh an individual

[25:41] who uh whom this

[25:42] um. Social

[25:44] Security Administration

[25:45] has designated to

[25:47] receive someone's payments who is

[25:48] someone who receives

[25:50] either SSA or SSDI

[25:51] or SSI or SSDI

[25:53] benefits. Um,

[25:55] and, uh the

[25:56] agency makes that appointment

[25:58] and generally you have to go through the

[25:59] agency, that federal

[26:01] agency to either have,

[26:02] um, become your own

[26:03] repayee

[26:05] or to have that repayee changed

[26:06] or replaced. Uh,

[26:08] and then we talk about a little

[26:09] bit about informal support.

[26:11] Um, that's, you

[26:13] know, we sort of all in our daily

[26:14] lives rely on informal

[26:16] support, whether that be, you know, a

[26:17] parent, a spouse, a

[26:19] sibling, a church

[26:20] friend, whoever it might be.

[26:22] Um, and, and as

[26:23] we all know, asking someone

[26:25] else, hey, you know, I need to get my roof

[26:26] done, but, um,

[26:28] I don't know who to choose. I know my

[26:30] insurance company's been real difficult

[26:31] about that. Uh, do you

[26:33] have a company? Do you have a suggestion? What do

[26:34] I do if they say no? You

[26:36] know, we all ask our friends,

[26:37] our neighbours, our family members,

[26:38] whatever. Um,

[26:40] but If in

[26:41] that same discussion,

[26:43] either with the insurance company or

[26:44] potentially with the potential

[26:46] roofing company,

[26:47] um, they don't have

[26:49] to rely on your friend or your

[26:50] neighbour to help you

[26:52] work through that decision. They

[26:53] don't have to be there uh

[26:55] and they don't have to allow someone

[26:56] to be there with you for the

[26:58] contractual discussion

[26:59] about, hey, you know, we're gonna

[27:01] try to work through your insurance company

[27:02] to do this, we're gonna, but

[27:04] here's the contract and you can only

[27:05] go with us for the next 6 months

[27:07] or whatever it says, we're gonna try to get

[27:08] this done. Uh, they

[27:10] don't have to allow another person into

[27:11] that room or that conversation, even

[27:13] if you say, hey, I really want

[27:14] my dad to help me because I don't

[27:16] really understand all this. I want some

[27:17] help. There's no, there's

[27:18] nothing that says they have to allow you to

[27:20] do that right now.

[27:22] But if you look at a supported

[27:23] decision making arrangement and if we had

[27:25] a, if we, if Oklahoma

[27:27] under the statutory

[27:28] framework actually had

[27:29] definitions

[27:31] and a framework and

[27:32] uh even uh

[27:34] potentially a model

[27:35] um form of

[27:37] for what a supported decision making

[27:39] arrangement looks like

[27:40] that third party, the

[27:42] your primary

[27:43] care physician, your banking

[27:45] institution, uh, your

[27:47] lender, your lender or

[27:48] your,

[27:49] um.

[27:50] Potential landlord could

[27:52] rely on that under Oklahoma

[27:54] statute because there's somewhere they could

[27:55] look to see this isn't

[27:57] something that this person

[27:58] just brought to me and made

[27:59] up. This isn't something that

[28:01] generated this is

[28:02] something that the

[28:04] Oklahoma statutes clearly

[28:05] say here's the framework

[28:07] of what this type of arrangement

[28:08] is. It is allowed

[28:10] and supported under

[28:11] Oklahoma statute,

[28:13] uh, and here's in

[28:14] form or fashion sort of what it should

[28:16] look like just like we have with

[28:17] our powers of attorney and some of our

[28:19] guardianship forms.

[28:21] Um, so the current,

[28:23] uh,

[28:24] Recognition, I, I kind of just

[28:25] talked about it, but uh if you go

[28:27] to the next slide,

[28:28] those questions that are kind of left

[28:30] outstanding right now,

[28:31] um, without that statutory

[28:33] framework for supported decision

[28:34] making are must an

[28:36] agreement follow a particular form.

[28:37] If I wanted to,

[28:38] uh, enter into a

[28:40] supported decision-making arrangement, I

[28:41] wanted someone, um, because

[28:43] of my disability to help me with

[28:44] that. There's nothing to

[28:46] show me or guide me.

[28:48] How I, how I do that.

[28:50] What do I, what

[28:51] do I, what do I

[28:53] write down? Do I do it, you know, like

[28:54] a holistic will on a

[28:55] napkin? What,

[28:57] how, how do I have

[28:58] to say, do I have to put the

[29:00] person's name or can I just put

[29:01] grandma? Uh, do I have

[29:02] to date it? Does it have to be

[29:04] not? I mean, what do I do with

[29:05] this? It says I can have

[29:06] this. I don't know what it is.

[29:08] Um, what

[29:09] information may a supporter receive with

[29:11] the individual's consent?

[29:12] So again,

[29:14] within not only the

[29:15] statutory framework that could be

[29:16] devised, but also

[29:18] the potential kind of model

[29:20] form or forms that could be

[29:21] devised, you,

[29:22] you have, you could have

[29:24] a definitional section

[29:25] of what

[29:27] types of decisions can be

[29:28] made, um, and

[29:30] what types of decisions do

[29:31] I as the individual want assistance

[29:33] with, um,

[29:35] clearly spelled out on a

[29:36] form. Um,

[29:37] that is signed by the parties and can be

[29:39] presented,

[29:40] um, to

[29:42] that third party who

[29:43] would then presumably be able to

[29:44] rely on that because of the

[29:46] basis, um, that could be

[29:47] created under Oklahoma statute.

[29:49] Um, when should a provider,

[29:51] school employer, landlord, or

[29:52] financial institution

[29:54] recognize the supporter's role?

[29:55] Again, if you go into the

[29:56] doctor's office with

[29:58] your 22 year

[29:59] old daughter and she's,

[30:01] uh, because of

[30:02] her Uh, mental

[30:03] health diagnosis of anxiety,

[30:05] OCD and

[30:06] um

[30:10] And her other medical

[30:11] uh conditions

[30:13] gets catatonic when she has to

[30:14] talk to someone about scheduling an

[30:16] appointment or about

[30:17] telling the doctor why she's there that

[30:19] day or how does she have

[30:20] insurance? Is she gonna be able to pay for

[30:22] it?

[30:23] Um.

[30:24] And she said, well, my, my

[30:26] mom's here with me. Um,

[30:27] she can answer all those questions.

[30:29] Generally speaking, the first thing they're gonna, you

[30:30] need to have your mom step out. You're an

[30:32] adult now, you know, these are

[30:33] conversations that we need

[30:35] to have with

[30:35] you.

[30:38] I, I don't know how

[30:39] to, I don't know how to answer that. I don't

[30:41] know what to do.

[30:42] Tears, start

[30:43] crying.

[30:45] Well, hold

[30:46] on a minute. let's get your mom. let's get a

[30:48] HIPAA release. What's a HIPAA

[30:49] release? Let's get this form

[30:51] signed. Let's just get this form. So you need to

[30:52] read through this form and if you

[30:54] want your mom to be able to sit in on

[30:55] this conversation and have this

[30:57] discussion with you, uh,

[30:58] and, and hear what I have to

[31:00] say, uh, as your

[31:01] medical provider, uh, you're gonna

[31:02] have to fill out this form first.

[31:05] So 30 minutes later,

[31:06] however long it is,

[31:07] um.

[31:10] The HIPAA form gets filled out and

[31:11] we start over again.

[31:13] This would provide a framework

[31:15] just in that limited

[31:16] example, which is an

[31:18] example from my life with my

[31:19] daughter. In that

[31:21] limited example,

[31:22] if we had a statutory

[31:24] framework for supported

[31:26] decision making, which is already

[31:27] recognized as an option

[31:29] of a least restrictive alternative

[31:30] for decision making in the state of

[31:32] Oklahoma.

[31:33] That could have been avoided

[31:35] because just like a guardianship

[31:37] paperwork, just like a power of attorney

[31:38] paperwork, you present that

[31:40] signed form and say,

[31:41] hey, here's my

[31:42] mom's my supporter, she helps

[31:44] me with my medical decisions,

[31:45] put this on file in my patient

[31:47] file and then when you switch

[31:48] doctors or you get referred to a

[31:50] specialist.

[31:51] Or you have to go

[31:52] to another doctor, the

[31:54] type of doctor you've never been to

[31:55] before, um,

[31:57] that's on file. that's in

[31:58] there. You don't have to have that discussion

[32:00] every time. You get over the

[32:01] hump of, in this

[32:03] case, the anxiety of

[32:05] not being able to have that

[32:06] conversation with someone and therefore

[32:08] blocking effectively

[32:09] your your ability

[32:11] to receive that medical care

[32:12] or that medical information or

[32:14] advice.

[32:16] Um, and

[32:17] again, but why would a third party rely

[32:19] on this if there's nothing

[32:20] in the statutes to tell them what it

[32:22] is and what their

[32:23] responsibilities and what their

[32:25] protections are?

[32:26] Again, a supported decision

[32:28] making, um,

[32:29] statute, um,

[32:30] and, and the definitional

[32:32] section and the implementation

[32:34] sections of that statute

[32:35] could put

[32:37] in, uh, the

[32:38] information and the reliance,

[32:40] um,

[32:41] uh. And

[32:42] and liability waivers

[32:44] that a third party would have

[32:46] when relying upon such an arrangement

[32:48] or such an agreement when

[32:49] presented with one that,

[32:50] uh, again,

[32:52] um, substantially

[32:53] conforms to

[32:55] the model form

[32:57] um that could be proposed in a

[32:58] statute. So

[32:59] what standards protect that third party

[33:01] and why can they rely on it again

[33:03] that can be easily defined in statute

[33:04] as we've done in many other

[33:05] statutes.

[33:06] Um, and

[33:08] then what controls the revocation,

[33:10] conflicts of interest, undue

[33:11] influence. Again, these are all things

[33:13] that could be addressed within the

[33:14] statutory framework. So

[33:16] there's no question about it.

[33:17] so that it's not,

[33:19] um.

[33:21] it's not

[33:22] a delivery, it's not a

[33:24] promise without delivery, I

[33:25] guess it's kind of how

[33:26] it, how it sits

[33:28] now. It's something that exists

[33:29] it's something that an individual

[33:31] with disabilities

[33:33] could access if they wanted

[33:34] to, but there's really no

[33:36] way to access

[33:37] that out of their toolbox,

[33:39] um, because

[33:40] there's no instructions with it.

[33:42] Um, you got a screwdriver

[33:43] and you have a power drill.

[33:45] Both of those are in your toolbox, but

[33:47] unfortunately if you want to

[33:48] use the power drill and not

[33:50] You know, wear your arm out.

[33:52] it's locked at the bottom

[33:53] of the box, and I don't know where the

[33:55] key is, but you

[33:56] gotta figure it out. You can

[33:58] you can use it, you can have

[33:59] it.

[34:00] I don't know what to tell you about how

[34:02] you use it. We don't have the

[34:03] instructions. we don't have the

[34:04] battery pack, um,

[34:06] and so that's that's kind of

[34:07] where we sit right now

[34:09] with regard to,

[34:11] um, supported

[34:12] decision making and and

[34:13] individuals with

[34:15] disabilities um

[34:16] ability to use that,

[34:18] um, uh that tool

[34:19] in their toolbox to help

[34:20] to have decisions made and

[34:22] help those decisions made.

[34:24] And so,

[34:25] lastly we turn to

[34:28] House Bill 3906,

[34:29] um, just as a reference

[34:31] point. all of the things

[34:32] that I've at least based upon

[34:34] my review, uh, uh

[34:35] of the proposed bill,

[34:37] uh, which did not become law

[34:38] last session,

[34:39] um.

[34:41] All of those

[34:44] Guardrails and definitions

[34:45] and reliance.

[34:47] Um,

[34:48] The language to support

[34:49] that all can be

[34:51] found in some form

[34:52] or fashion in that bill.

[34:54] Now that's not to say that it

[34:55] might need some amendment,

[34:57] it might need some tinkering

[34:58] with, but

[35:00] From where we are now with just

[35:02] referencing it as an

[35:03] option to

[35:04] looking at House Bill

[35:06] 3906,

[35:07] um.

[35:09] As a reference point for a

[35:10] framework for what

[35:11] the supported decision making

[35:13] is, who can rely

[35:14] on it, who can enter into

[35:16] it, um,

[35:17] what the, um,

[35:19] protections are for,

[35:20] um, issues like undue

[35:22] influence of a supporter

[35:23] under that, all of

[35:25] those things can be found in

[35:26] there and in fact, as I

[35:28] recall and Representative Heffner

[35:29] can correct me if I'm wrong, I

[35:31] think I have a copy of it in here, but

[35:32] there's also a statutory

[35:33] framework, uh, a

[35:35] proposed. Um,

[35:36] form which could be used

[35:38] for

[35:40] an individual to

[35:42] enter into a supported decision

[35:43] making arrangement uh

[35:45] with check

[35:46] boxes and lines for

[35:47] them to put what types of

[35:49] decisions do I want the

[35:51] supporter to assist me with

[35:52] and uh

[35:54] when.

[35:56] When the supporters

[35:57] assistance will be needed and

[35:59] what information they're gonna have access

[36:00] to.

[36:01] Um.

[36:03] So

[36:04] The question that we're left with last

[36:06] slide. the question that we're left

[36:07] with

[36:08] is

[36:12] Would a general

[36:13] statutory framework

[36:15] um make supported decision

[36:16] making not only

[36:18] easier to use and

[36:19] recognize,

[36:20] um,

[36:22] With providing safeguards, but

[36:23] would it actually open

[36:25] that toolbox up for

[36:26] individuals with disabilities in the

[36:28] state that would like

[36:30] To exercise that type

[36:31] of freedom and

[36:33] support.

[36:41] >> Thank you, thank you so much for your

[36:42] presentation.

[36:43] Um,

[36:45] If there are any

[36:46] questions.

[36:50] >> Yeah, I appreciate you being here and

[36:51] you're obviously very knowledgeable

[36:53] within this area. Um,

[36:54] and I think you

[36:56] explained well the difference

[36:57] between a supported

[36:58] decision-making document and

[37:00] that, that framework and the

[37:01] guardianship. I

[37:02] guess my question would be,

[37:04] can you explain more to me the

[37:05] difference between that

[37:07] and just informal

[37:09] help? Um,

[37:11] particularly with regards

[37:12] to, um,

[37:15] the third party,

[37:16] uh, what would be their duty

[37:18] to the

[37:19] individual and the decision

[37:20] maker. Uh, I know it's

[37:22] not a framework, so that's kind

[37:23] of why we're here, but before

[37:25] you put something in a framework, I think we

[37:26] need to know the right path to

[37:28] go down.

[37:29] Um, and yeah, I

[37:31] guess just start there.

[37:32] Just the duty

[37:33] of the third party as well

[37:35] as the duty of the supported decision

[37:36] maker to that

[37:38] person who needs it. >> OK.

[37:40] So, uh,

[37:41] currently,

[37:42] Broadly speaking, the

[37:44] third party in whatever context

[37:46] you might be referencing

[37:47] has no duty

[37:49] to rely on.

[37:51] A supported decision maker.

[37:53] If I walked in and said, hey, my

[37:54] dad's with me. I've chosen

[37:56] him as my supported decision

[37:57] maker, um,

[37:59] I'm getting ready to decide

[38:00] whether or not I need you to give me

[38:02] some more information about my

[38:03] diagnosis of prostate

[38:04] cancer. I need

[38:06] a little bit more information

[38:07] about um what my

[38:09] options are and then ultimately he's gonna

[38:10] help me decide, you know, what

[38:12] I do.

[38:13] Depending on the medical provider that

[38:15] you go to,

[38:16] uh,

[38:18] They have well it's not

[38:20] depending no medical

[38:21] provider has a duty to

[38:23] um or requirement to

[38:24] allow someone else to

[38:26] speak with an adult

[38:27] and have a supporter there with

[38:29] them about

[38:30] their personal

[38:31] healthcare, um,

[38:33] depending on which provider you go

[38:34] to and I can only again speak from

[38:36] personal examples

[38:37] sometimes you know if

[38:38] it's your primary care physician

[38:40] that you've known for 50

[38:41] years. They're

[38:42] probably gonna let you bring in whoever you

[38:44] want, potentially they're not under

[38:46] any obligation to, that's

[38:47] just they've come to know your

[38:48] family. but if you're

[38:50] switching insurance companies,

[38:51] you've got a new provider because you're out

[38:53] of network now or something

[38:54] and you have to go to a new primary

[38:56] care provider or a new specialist

[38:57] that you've never been to because of a

[38:59] new diagnosis like an oncology

[39:01] or a cancer diagnosis,

[39:02] um, there's no

[39:04] duty for them to

[39:05] recognize that you want support

[39:07] from someone. there's no duty

[39:09] for them to

[39:09] recognize

[39:11] that. You

[39:12] may not understand all the

[39:14] information that's being provided to you,

[39:16] which if you think about it, could

[39:17] have all sorts of adverse outcomes

[39:19] too. Not only potentially

[39:20] could they prevent you from having

[39:22] someone in the room with you, but

[39:23] they could also decline

[39:25] to provide you medical care based on

[39:26] the fact that they don't believe you

[39:28] understand. Um,

[39:29] the, the information they're

[39:31] being provided and the gravity of

[39:32] the decisions that are before you

[39:34] and they could tell you, I'm sorry, I can't treat

[39:35] you. I need you, you know, we're gonna refer

[39:37] you to someone else, um,

[39:39] which could prolong care, which

[39:40] could, you know, I mean, could have all sorts of

[39:42] outcomes, adverse or

[39:43] otherwise with

[39:44] regard to currently,

[39:46] um, the duties or responsibilities

[39:48] of a supporter, which

[39:50] I think was the second part of your question if I

[39:51] have it right.

[39:53] Currently under the statute

[39:54] there there's no framework for

[39:56] that either. there's no, there's no,

[39:58] there's no guidance on what that would

[39:59] be. So again in that same

[40:01] scenario, if I said, Dad,

[40:02] hey, I want you to be my

[40:04] supporter, um, I've got this

[40:05] really scary diagnosis. I need to

[40:07] go in and talk to my doctor. it's a new

[40:08] oncologist, I've never been

[40:10] there. took me 6 months to get

[40:11] in, um,

[40:12] and I, I need you to go with

[40:14] me. Um,

[40:15] if

[40:17] We went into that

[40:18] situation. There's nothing

[40:20] to prevent my dad from taking

[40:21] over the conversation if

[40:23] the provider allowed him in the

[40:24] room, um.

[40:26] And uh

[40:28] whether it appeared to be or

[40:30] it was subtly pressure

[40:31] me into making a decision one way or

[40:33] the other, there's no protection

[40:35] for the for me as the

[40:36] individual on that end

[40:37] either again because

[40:39] there's just a total lack of

[40:40] of framework and that's

[40:42] again sorry but

[40:44] that's arguendo

[40:45] if the providers like oh

[40:46] a supported decision making arrangement.

[40:48] I, I read that that there's

[40:50] that's a thing in the statutes, right?

[40:51] That's instead of a guardianship

[40:53] you went with this. OK, well that's

[40:54] fine.

[40:56] Oh, well, your dad's your supporter.

[40:57] Well, OK,

[40:59] this guy's really not understanding what's

[41:00] going on. I think he needs, we need a

[41:02] really aggressive form of treatment

[41:03] right now. Um,

[41:05] as his supporter, you can just sign

[41:06] off on that, right? Sure,

[41:08] I guess, I don't know.

[41:09] So my dad's, you know,

[41:11] doomsday scenario, of course, but my

[41:12] dad signed. up on this

[41:14] treatment. maybe it's something I

[41:15] didn't want. maybe it's something

[41:16] that's let's just look at maybe

[41:18] it's something I didn't want,

[41:19] right? There's nothing to say

[41:21] that that's not what a supported

[41:22] decision maker is right now.

[41:24] Uh, again, not only do we lack

[41:25] the benefits of

[41:27] describing what it is,

[41:28] but we also don't

[41:29] have.

[41:31] The benefits of describing what it's

[41:32] not and and what

[41:34] defining the decisions ultimately

[41:36] rest with the individual

[41:37] that this individual because of

[41:39] their disability and because of

[41:41] how it affects them just

[41:42] need that extra

[41:43] support

[41:44] above and beyond the level

[41:46] of what someone

[41:47] without that particular disability

[41:49] or that particular type

[41:50] of impediment because of their

[41:52] disability

[41:52] has.

[41:54] I don't know if that answered your

[41:55] question, but that's

[41:57] >> No, that, no, absolutely

[41:59] helpful. Um, I,

[42:00] I guess my perspective,

[42:02] uh, if, if we

[42:03] establish a framework, I don't

[42:05] want it to be convoluted

[42:06] and, you know, this

[42:08] is, uh,

[42:09] although it's been in statute,

[42:10] it's by name,

[42:12] there, there's no such, I mean,

[42:14] there's not a mechanism, which is the

[42:15] reason why you guys are here having

[42:17] the interim study. Uh,

[42:18] but I, I envision a world

[42:20] where whether it's a

[42:22] Bank

[42:23] Healthcare institution,

[42:25] um, they have this document

[42:27] that's a supporting decision-making

[42:28] document says that

[42:30] the patient or the customer of

[42:31] the bank is entitled to

[42:33] ask to have

[42:34] a supporting decision-maker

[42:35] present.

[42:36] Um, one, I, I

[42:38] think they're already without

[42:40] it, they're entitled to

[42:41] ask the institution,

[42:42] hey, let's take a

[42:44] second. I wanna

[42:45] reach out to my mom, my dad,

[42:47] someone to help me. And, and

[42:48] I don't think the institution

[42:50] can

[42:51] They can't keep them there and prevent

[42:53] them from doing that. Um,

[42:54] but on the other hand,

[42:56] if the individual who

[42:57] has not

[42:59] the decision-maker, the other

[43:00] individual, if potentially

[43:02] they don't want that person

[43:03] present, do, are we gonna be

[43:05] in a world where the

[43:06] healthcare provider says, well,

[43:08] hang on, I don't know what this

[43:09] is. I think

[43:11] we need to have this person present and it's

[43:12] actually

[43:14] contrary to what

[43:15] the individual who we're trying to give as

[43:17] much freedom as possible,

[43:18] um, her, who

[43:20] has the same amount of freedom

[43:21] as any other

[43:23] individual currently without

[43:24] the decision maker,

[43:25] uh, I don't wanna hamstring

[43:27] their ability to,

[43:28] uh, or just

[43:30] have their agency.

[43:31] Can you speak to that a little bit?

[43:33] >> Yeah, very quickly, I think

[43:34] absolutely, um, in

[43:36] the, in the

[43:38] first part of the

[43:39] example,

[43:40] um,

[43:42] Hey, I need to step back. I need to talk

[43:43] to someone.

[43:45] I think that's reasonable. I think that's what

[43:47] we look at as informal

[43:48] decision making. But again, depending

[43:50] on the context,

[43:51] that also is an extra step

[43:53] that that person with a

[43:54] disability.

[43:55] May not have to go through

[43:57] if there was an appropriate

[43:58] supported making a decision making

[44:00] arrangement that was

[44:01] recognized and was supported by

[44:02] statute. Um, you may

[44:04] not have to have that pause.

[44:06] And again, sometimes that pause

[44:07] could be, you know, 15 minutes to go

[44:09] out and make a phone call. sometimes

[44:10] that pause could be another 2 weeks till

[44:12] you get back in with that same lender

[44:13] or that same because of their appointment

[44:15] schedule longer if we're

[44:16] talking medical care oftentimes,

[44:18] well, your next appointments, I don't have

[44:19] time, you know, I have 30 minute

[44:20] slot. this is my slot to see

[44:22] you so.

[44:24] In that part of the example,

[44:25] I think, although,

[44:27] yes, oftentimes that happens in

[44:28] our everyday lives, right? We want to

[44:29] step out and make a

[44:30] decision.

[44:33] But if you had a

[44:34] mechanism whereby, especially

[44:35] the individual with the disability where

[44:37] that decision making is already

[44:38] more difficult potentially

[44:40] than those of us

[44:41] that wouldn't need that type of

[44:43] arrangement, it adds

[44:44] on an extra layer. And again, if

[44:46] you look in the context of people,

[44:47] specifically mental health

[44:49] issues, anxiety, you

[44:50] know, those types of things,

[44:52] um.

[44:54] Even

[44:55] that

[44:56] Decision or ability to step

[44:58] outside and calmly,

[44:59] rationally.

[45:01] Make that call, have that

[45:02] discussion.

[45:04] 50% of the time I'm making

[45:06] that up completely, but 50%

[45:07] of the time that

[45:09] individual is just gonna leave.

[45:11] And who knows when the

[45:12] next time they're going to feel comfortable enough

[45:14] going into that situation and

[45:15] trying to have that important decision made

[45:17] or that important service provided

[45:18] to them. The

[45:20] second part of your question, could you

[45:21] repeat it again? Sorry.

[45:23] >> Yeah, uh, the individual doesn't

[45:25] want to reach out to

[45:26] their support decision maker. >> Absolutely. I think

[45:28] that's very fair, and I think

[45:29] as I recall, I think there

[45:31] are within the

[45:32] proposed bill that

[45:33] was, um,

[45:35] Uh, in last year's session, I

[45:36] think there are some of those,

[45:38] um, categories and guideline Representative

[45:39] Hefner is shaking her head yes, she

[45:41] could speak to it better than I. She was

[45:43] the author, but,

[45:44] um, but certainly

[45:45] in looking at whether or not,

[45:47] um, you as a legislative

[45:48] body want to put that

[45:50] framework into Oklahoma statute those.

[45:51] the kinds of things that you could definitely

[45:53] put in there and I think

[45:54] that makes reasonable sense

[45:56] um to

[45:57] uh put in there

[45:59] I can say that generally speaking

[46:01] in in other states that have

[46:02] statutorily supported

[46:04] decision making and what I

[46:05] recall from the proposed

[46:07] bill that Representative Heffner put

[46:08] forward um

[46:10] there are there is clearly

[46:12] um the ability of the

[46:13] person not to use that support when

[46:15] they don't want to and there shouldn't

[46:16] be anything

[46:17] um.

[46:19] tied to

[46:20] um

[46:22] The form that they would submit

[46:23] to, you know, the lender, the medical

[46:25] provider or whatever, that would

[46:26] say that would, would lead a

[46:28] medical provider or whoever to say,

[46:30] well, if your supporter is not here,

[46:31] then you can't make that decision because

[46:33] it clearly defines

[46:34] they're only for support. The

[46:36] decision is ultimately mine.

[46:38] It opens the door

[46:40] for them to for the supporter

[46:41] to get access

[46:43] where they otherwise would not

[46:44] have to jump through hoops because

[46:46] the person being supported

[46:47] wants them to have that access and

[46:49] that's what the document,

[46:50] the agreement would provide

[46:52] um so there would be nothing in the

[46:54] document or agreement that

[46:55] would There should not

[46:56] be anything in the document or

[46:57] agreement that

[46:58] would

[47:00] necessitate a

[47:01] third party from saying hey you

[47:03] can't make this decision without your

[47:04] supporter. I'm not comfortable

[47:06] and that also goes into

[47:08] um within the statutory

[47:09] framework making sure there is

[47:11] built into it the

[47:12] reliance

[47:13] the um

[47:15] uh the reliance part

[47:16] for the third party

[47:18] of

[47:19] um.

[47:20] I'm drawing a blank. I'm so

[47:22] sorry, um,

[47:23] for, um,

[47:25] the waiver of liability,

[47:26] basically within the statute to

[47:28] say if you rely on

[47:29] this, it's in this substantial

[47:31] form, you as a third

[47:32] party are not liable

[47:34] for.

[47:35] Anything that the

[47:36] individual could say, well, you let this

[47:38] person access my medical

[47:39] records, you let them

[47:40] know my Social Security number when I

[47:42] was applying for this loan

[47:44] that can be and I

[47:45] believe in the proposed bill,

[47:47] um, can be built into

[47:48] it as well and I think

[47:50] certainly those are the considerations

[47:51] that this body should make when

[47:53] looking at

[47:54] um.

[47:56] Uh, defining what that framework

[47:57] is if, if you choose to move

[47:59] forward with that.

[48:01] >> One more thing and then dec

[48:02] we'll get to you. Um,

[48:04] I, I think throughout your

[48:06] presentation, the thing that stood

[48:07] out to me the most important and

[48:09] probably necessary is access

[48:10] to third-party protected

[48:12] information. And as you mentioned, there's

[48:13] a HIPAA release, so,

[48:15] you know, that can be authorized

[48:16] prior to going into that doctor's

[48:18] office and carried out then just

[48:20] like This

[48:21] hypothetical document that we would

[48:23] have, uh, but I,

[48:24] I, I'm sure they

[48:26] have them for banks too. I've just never

[48:27] drafted one or seen

[48:28] one. so, so

[48:29] I think that's important,

[48:31] but kind of

[48:33] what I envision is

[48:34] if the institution

[48:36] has this thing and they can't force you

[48:37] to talk to your decisionmaker

[48:39] and with it, they can't

[48:41] prevent you from

[48:43] including your decision maker,

[48:45] um.

[48:46] I look at informal decision

[48:48] making and I, I wonder, you

[48:49] know, are they preventing

[48:50] people, they

[48:52] being the institutions, whether it's

[48:53] healthcare, um,

[48:55] or a bank, those are

[48:57] just the ones that come to mind the easiest.

[48:58] Are they preventing people from,

[49:00] you know, reaching out to their friends and

[49:01] family? is that

[49:03] a problem that we're seeing

[49:05] or we're gonna create a document

[49:06] where it might

[49:07] actually

[49:09] Create more liability

[49:11] issues for both the

[49:12] institution and the decision maker

[49:14] and might actually

[49:16] I don't know, prevent the

[49:17] individual from,

[49:19] you know, fully

[49:21] Experiencing that

[49:22] interaction with that person

[49:24] where if they don't want to,

[49:25] they take in their informal

[49:27] aid, whoever it is.

[49:29] And, and with a

[49:30] document, whether it's a HIPAA release,

[49:32] which is a great example, or

[49:34] another, another release,

[49:35] um,

[49:37] I, I just don't

[49:39] wanna, and I say I,

[49:40] I, I don't think the state wants

[49:42] to, uh, we have to be

[49:43] careful. We don't wanna create something

[49:45] that can cause

[49:46] more consternation

[49:48] or create more liability

[49:50] issues or prevent someone

[49:51] from, um, you

[49:53] know, going into the bank, getting a loan

[49:54] cause there's some document and then

[49:56] that loan officers like,

[49:57] well, hang on, I don't know that we

[49:58] can do this. You have one of these on

[50:00] file. Um,

[50:02] and I guess there could be statutory framework,

[50:04] but I don't envision them preventing

[50:05] them. Uh, reaching out

[50:07] to their parent, uncle,

[50:08] whoever it may be right

[50:10] now. But the access to

[50:11] the third-party protected

[50:12] information, 100%, but that

[50:14] could be solved with a

[50:15] HIPAA release or some sort of banking

[50:17] release. And I understand

[50:18] a POA is probably not,

[50:20] you don't want to go that far. We're trying to find

[50:22] something right above

[50:23] informal but below all this

[50:25] other stuff. But we, I

[50:26] think that it needs, there needs to

[50:28] be an absolute

[50:30] need for it before

[50:31] we create a whole,

[50:33] um,

[50:34] It's not even close to a guardianship,

[50:35] but sub guardianship

[50:37] framework. Um,

[50:38] so that would just be

[50:40] my comment that I

[50:41] have.

[50:48] Representative

[50:49] >> deck.

[50:51] Thank you, Mr. Chairman.

[50:53] Uh, appreciate all

[50:54] the information and the examples that

[50:55] you've given, um,

[50:58] I did want,

[50:59] and there probably already is

[51:01] framework for this

[51:02] around POA

[51:03] and representative pay,

[51:05] but I am curious

[51:07] what type of liability

[51:08] waiver or what

[51:10] is the liability of

[51:11] that supported

[51:13] decision maker,

[51:14] um, you know,

[51:15] for, for a decision that

[51:17] maybe doesn't end up going

[51:18] the right way. Uh,

[51:20] is, or are they, are they,

[51:21] is that liability waived?

[51:23] Is it,

[51:24] um, is it,

[51:26] is it subjugated?

[51:27] Can, Uh,

[51:29] is there already, uh, kind of

[51:30] rules around that?

[51:32] >> So there aren't any rules

[51:34] around it within the

[51:35] supported decision-making context.

[51:37] Sorry, I'm not trying to be facetious,

[51:38] but, um, which

[51:40] is part of what

[51:41] the educational component is

[51:42] today in a supported

[51:44] decision-making arrangement though, because

[51:45] the decision ultimately is spelled

[51:47] out. could be spelled out

[51:48] both with the statutory

[51:50] framework and within the confines

[51:51] of a, a recognized

[51:53] document.

[51:54] Um, the,

[51:56] um, all decision making

[51:57] is clearly defined as resting

[51:59] with the individual. Um,

[52:00] and the individual is

[52:01] also

[52:03] Tasked with the responsibility

[52:05] of choosing their supporter,

[52:07] um, there are also

[52:08] safeguards in place,

[52:10] um, or could be safeguards put in

[52:11] place and, and I believe were in

[52:13] the proposed house bill,

[52:14] um, with regard

[52:16] to, um,

[52:17] reporting, um, if it

[52:19] looks like there's some sort of undue

[52:20] influence, um,

[52:22] by the supporter,

[52:24] so

[52:24] liability.

[52:26] Waiver, I don't

[52:28] know. I mean, it could be built in

[52:29] the statute if it was something that

[52:31] seemed necessary, but I think the

[52:32] way that the framework could be laid

[52:34] out because the

[52:35] decision to appoint the person and pick the

[52:37] person and because of the guardrails

[52:38] for the potential

[52:40] um reporting,

[52:42] uh, I don't,

[52:43] I, I don't see

[52:45] the liability issue of

[52:46] the supporter being.

[52:48] A huge

[52:49] problem >> I

[52:51] mean, I, I think in some

[52:52] regards, although if we're,

[52:54] if we're designating it, that

[52:55] changes this. In some regards, it kind

[52:57] of falls under Good Samaritan,

[52:59] uh, but if we're that, that,

[53:00] but that seems more like an informal

[53:02] support, right?

[53:03] Um, if we're designating

[53:05] this, it's, you know, I, I don't know

[53:07] that Good Samaritan applies the

[53:08] same way.

[53:09] Um, so

[53:11] anyway, is, are there

[53:12] currently

[53:13] Is there a liability

[53:14] structure,

[53:16] accountability and an oversight

[53:17] structure around a power of

[53:19] attorney? Cause I know we're kind

[53:20] of modelling this as a

[53:22] or and guardianship. How are,

[53:24] how are we currently

[53:26] Uh, monitoring those

[53:28] parts and how

[53:29] might that affect how we decide

[53:31] to apply that going forward.

[53:32] It's also been at least

[53:34] 6 months since I read that bill.

[53:35] So,

[53:37] >> so, uh, the, the short

[53:38] version to answer your question is yes,

[53:40] again, uh, uh, it's

[53:41] certainly up for,

[53:43] um, potential alteration

[53:44] or amendment. It was kind

[53:46] of an initial, I, I

[53:47] don't want to call it initial. I think

[53:49] Representative Hefner's been working on this

[53:50] for some time, but it

[53:51] was, uh.

[53:53] A kind of

[53:54] large first step

[53:56] in providing framework

[53:57] for um

[53:59] supported decision making arrangements

[54:01] to be placed in

[54:01] statute.

[54:03] Guardianships, so that's the easiest

[54:05] one to describe

[54:06] to answer your question. Yeah, there are a lot

[54:08] of guardrails and guardianships because

[54:09] ultimately the court has

[54:11] responsibility for

[54:12] deciding whether or not that individual

[54:14] and the decisions made on their behalf

[54:15] and any liability of the

[54:16] guardian and

[54:18] that that fiduciary trust

[54:19] has been violated,

[54:20] right? But

[54:22] when you're appointed guardian,

[54:24] um, one of the court

[54:26] orders that comes along with that

[54:28] says that you, um,

[54:29] are tasked with, you are

[54:31] legally tasked with under the statute.

[54:33] Um, making decisions

[54:34] that are always in consideration

[54:36] of the best interests.

[54:38] so it's a best interest consideration

[54:39] of the individual.

[54:41] Um, so guardianships

[54:43] are are pretty insulated in that way.

[54:44] I mean, I think they're protected. I think they're

[54:46] recognized and,

[54:47] uh, if there is some sort

[54:49] of abuse or

[54:50] fraud, uh, all

[54:52] the time we have adult protective

[54:53] services through DHS that gets

[54:54] involved sometimes in abusive

[54:56] or neglectful

[54:57] guardianships

[54:59] we have, you know, the courts,

[55:00] the the. under

[55:01] statute, the person who

[55:03] is under guardianship has

[55:04] the ability um to

[55:06] go to court themselves to challenge

[55:08] that to either have it

[55:09] limited set aside

[55:11] or to say that they're being

[55:12] abused or neglected under the

[55:13] guardianship very

[55:15] common example is potential

[55:16] financial abuse. My money is

[55:18] not going to where it needs to

[55:19] be. it's not paying for my

[55:21] housing it's not, I don't know where it

[55:22] is and I don't have any extra money at the

[55:24] end of the month, you know,

[55:25] um, and all of those things can be handled

[55:27] by the court with regard

[55:28] to power of attorney.

[55:30] Um, it's a,

[55:31] a little less.

[55:33] Uh, defined, I

[55:34] think under statute,

[55:36] um, I think

[55:38] Uh, medical providers

[55:39] again being the most

[55:40] common example,

[55:41] uh.

[55:44] Also financial

[55:45] institutions.

[55:46] We've had power of attorney on

[55:48] the books forever,

[55:49] um, so

[55:51] when they have that

[55:52] document in place or on file

[55:54] or it's presented to them, they

[55:55] know what it is, they understand it, and

[55:57] generally speaking,

[55:58] um,

[55:59] they,

[56:01] they know how to work within those,

[56:02] uh, guidelines, right,

[56:04] in those, those frames,

[56:05] but,

[56:06] um.

[56:08] The liability under

[56:09] a power of

[56:10] attorney.

[56:13] There, there's not much

[56:15] statutory

[56:16] definition of that as I

[56:17] recall, um, but

[56:19] I certainly, uh,

[56:20] could be corrected on that. Uh,

[56:22] I, I just, I just don't know off

[56:23] the top of my head without looking at

[56:25] it again, but I don't recall

[56:26] that there's any really

[56:28] defined, again, it's

[56:29] always while acting as

[56:31] power of attorney, I believe the statute

[56:32] again makes that best interest

[56:34] finding, you should be acting in the

[56:35] best interest of. The difference

[56:37] with supported decision making though

[56:38] is that supporter

[56:40] is not necessarily. acting

[56:42] in the interest at all.

[56:43] The dei the,

[56:45] the supported person, the person

[56:46] with the disability that has chosen

[56:48] that form of support is

[56:49] the decision maker and is acting

[56:51] on their own behalf.

[56:52] And so the supporter

[56:54] really has supported decision making

[56:55] in a lot of ways opens

[56:57] the door for

[56:59] that individual to choose what

[57:00] type of support they want rather than

[57:02] having a court decide it for

[57:03] them or under a power of

[57:05] attorney. Someone

[57:06] else at some point saying, oh wait, now

[57:08] you lack the capacity to do

[57:09] this again absent the example

[57:10] of I'm out I'm out of,

[57:12] I'm overseas, I'm, I'm

[57:13] not reachable because of my physical

[57:15] location or whatever.

[57:16] Um, and

[57:18] so, uh, with

[57:19] regard to that, um,

[57:21] you know, and it's

[57:22] sometimes it's

[57:23] hard. Or more

[57:25] difficult for me to answer those

[57:26] types of questions because I

[57:28] do come to it, I just be

[57:29] honest, I come to it from such a disability

[57:31] lens. Some of the

[57:33] questions that are being asked,

[57:34] um, seem foreign

[57:36] to me because as a person not only

[57:37] that supports two individuals with

[57:39] disabilities and my own children,

[57:41] um, but

[57:42] that's my job, it's what I do

[57:44] 5 days a week, 7

[57:45] days a week, all the

[57:47] time. The

[57:48] questions that are asked

[57:49] of individuals with disabilities

[57:51] about the choices they want to make and what

[57:52] authority do I have and what kind of help can

[57:54] I have, they just come from

[57:55] a different. And I don't

[57:57] mean to be disrespectful, but they come from a

[57:58] different perspective. And

[58:00] so

[58:01] whereas

[58:02] supported decision

[58:03] making.

[58:05] Certainly, like

[58:06] any,

[58:07] any legal arrangement that

[58:08] we have in place, there

[58:10] are concerns and cautions about

[58:11] whether or not an individual

[58:13] could be

[58:14] um

[58:15] taken advantage of under that

[58:17] situation, um, whether or

[58:18] not, whether and how a third

[58:20] party relies on that,

[58:21] um.

[58:23] Those I think are things

[58:24] that

[58:26] Could be

[58:27] discussed and talked about

[58:29] and use the framework

[58:30] um of the

[58:31] previous house bill that was

[58:33] presented.

[58:34] To suss those issues

[58:35] out because from

[58:37] a disability lens, from a

[58:38] disability standpoint, having

[58:40] that tool in the toolkit

[58:42] would be a huge

[58:43] advantage. And like I said, I

[58:44] know we have other speakers and I,

[58:46] it's not really my point

[58:47] to talk about my personal experience,

[58:49] but

[58:50] afterwards, if anyone's

[58:52] interested, uh, or if we

[58:53] have time at the end, I'd be happy

[58:55] to talk about

[58:56] the real life difference

[58:58] and the choices that are made by

[59:00] families every day.

[59:02] That my family had to make, which

[59:03] was full guardianship

[59:05] for one of my now

[59:06] adult children.

[59:08] And how something like supported

[59:10] decision making could have made

[59:12] my daughter's life and our

[59:13] lives a hell of a lot easier,

[59:15] to be honest with you,

[59:16] um, and would have

[59:18] given her

[59:20] A tool in her toolkit that she could

[59:22] use that wasn't a

[59:23] fight. Every day

[59:25] trying to get disability services at

[59:27] college or a fight

[59:28] every day trying to get a

[59:30] doctor's appointment scheduled cause she couldn't

[59:31] pick up the phone and do that.

[59:32] Again, happy to

[59:34] discuss that either on or off the

[59:35] record later, but

[59:37] there, there's some real-life examples

[59:38] that if you haven't lived

[59:40] it, and again, not to

[59:41] be disrespectful, but if you

[59:43] haven't lived it, it,

[59:44] I understand how it's hard to see that

[59:45] view of we've already got,

[59:47] you know, similar things in place,

[59:49] and we have to worry about third-party reliance

[59:50] and those kinds of things.

[59:52] I think that all of those things like any

[59:54] other statute that we've ultimately put on

[59:55] the books, reasoned

[59:57] people could come up

[59:58] with a framework that

[1:00:00] is not only

[1:00:01] protects the individual and protects

[1:00:03] third parties, but provides

[1:00:04] an avenue in this tool

[1:00:06] for individuals' disabilities that

[1:00:07] quite honestly is lacking

[1:00:09] in.

[1:00:11] In our statutes right now and

[1:00:13] as something that they can actually rely

[1:00:14] on.

[1:00:16] At Flint farrefield, I'm not sure if that

[1:00:18] answered your question.

[1:00:20] Representative >> Stinson,

[1:00:21] believe you had a question.

[1:00:23] Thank you. I had to, uh, step outside

[1:00:25] to make phone calls, so I apologize if

[1:00:27] you already covered this and I also

[1:00:28] apologize to Representative Heffner

[1:00:30] if you mentioned this in your bill

[1:00:31] presentation earlier this year.

[1:00:32] I have slept a lot since then,

[1:00:34] so I don't recall, but.

[1:00:36] Uh,

[1:00:37] it's kind of a two-part question. First

[1:00:39] is,

[1:00:40] uh,

[1:00:41] is there a, a

[1:00:43] more fully fleshed out regulatory

[1:00:44] framework for this, including

[1:00:46] forms and, and,

[1:00:47] um, sample

[1:00:48] documents and that kind of thing

[1:00:50] in other states?

[1:00:51] >> There are, um, and

[1:00:53] one of our speakers, Morgan

[1:00:54] Whitlodge, yeah, actually

[1:00:56] and >> my second part maybe this would be

[1:00:57] more appropriate for her, but I'll, I'll go and just tee

[1:00:59] this up now would be

[1:01:01] if, if that's the case, would this

[1:01:02] be something that might be appropriate

[1:01:04] for the our our

[1:01:05] Oklahoma chapter of the

[1:01:07] Uniform Laws Commission

[1:01:08] to take up so that we

[1:01:10] can make sure that whatever we

[1:01:11] pass. Um,

[1:01:13] has some, some consistency

[1:01:14] across state lines such

[1:01:16] that, you know, when people move or

[1:01:18] they move from here to here or

[1:01:19] whatever those documents are

[1:01:20] consistent, um,

[1:01:22] you know, kind of on a, a national,

[1:01:23] uh, basis.

[1:01:25] >> Absolutely, I think that's a,

[1:01:26] a, a, a wonderful

[1:01:28] idea. I think that's something

[1:01:30] potentially. That Representative Hefner's

[1:01:31] already contemplated. Again,

[1:01:33] I don't want to speak for Representative

[1:01:35] Heffner, but I believe that,

[1:01:36] um, using, uh,

[1:01:38] statutory examples from other

[1:01:40] states, um, was

[1:01:41] something that was helpful

[1:01:43] in designing the proposed

[1:01:44] bill that was, um,

[1:01:46] put before the committee,

[1:01:47] uh,

[1:01:47] previously.

[1:01:53] >> Thank you so much thanks for your

[1:01:55] questions and the the next

[1:01:56] presenter will give a little bit

[1:01:58] broader uh over

[1:01:59] uh the other states that

[1:02:01] have worked on this as

[1:02:02] well um

[1:02:03] I would um

[1:02:05] the next presenter

[1:02:06] uh Morgan

[1:02:08] Whitlatch she's

[1:02:09] the director of supported decision

[1:02:11] making initiatives at

[1:02:12] the Center for Public

[1:02:14] Representation

[1:02:15] thank you so much for being with us

[1:02:17] today.

[1:02:19] I appreciate your patience as

[1:02:20] well. Um,

[1:02:22] please go

[1:02:23] forward with your presentation.

[1:02:25] >> Wonderful. I'm gonna share

[1:02:27] my screen with my PowerPoint

[1:02:28] presentation just a

[1:02:29] moment.

[1:02:32] And I will say just as I do this, a

[1:02:34] lot of, you know, a lot of really

[1:02:35] good questions have been asked,

[1:02:37] and a lot of states are grappling

[1:02:38] with these same questions, and I think

[1:02:40] we can learn a lot from the

[1:02:41] experiences.

[1:02:42] Um, that are happening

[1:02:44] in other states. Um,

[1:02:46] I would characterize,

[1:02:47] you know, creating frameworks

[1:02:49] for supported decision making

[1:02:50] agreements as

[1:02:52] a trend, um,

[1:02:53] in state laws in the United

[1:02:55] States, and I'm gonna talk a little bit

[1:02:56] about that, um,

[1:02:58] now, um, just

[1:02:59] to introduce myself first. my

[1:03:01] name is Morgan Whitlatch.

[1:03:02] I am the director of

[1:03:04] supported decision making initiatives at

[1:03:05] the Center for Public

[1:03:06] Representation.

[1:03:08] Um, the Center for Public

[1:03:09] Representation is a leading

[1:03:10] national advocacy center

[1:03:12] for people with disabilities in the

[1:03:13] United States for over 50

[1:03:15] years. And uh

[1:03:16] we've done some real leadership

[1:03:18] in working on supported decision

[1:03:19] making. We provide technical

[1:03:21] assistance around the country on these

[1:03:22] kinds of topics. We've

[1:03:24] worked on demonstration

[1:03:25] projects, training,

[1:03:27] resource development, and other

[1:03:28] collaborations. and

[1:03:29] you're gonna see in my presentation

[1:03:31] that I am highlighting some of

[1:03:33] the work that We've done this in

[1:03:34] one of our specialized supported

[1:03:36] decision making website,

[1:03:37] supported Decisions.org.

[1:03:39] On that website, we have an

[1:03:40] interactive map where you

[1:03:42] can see examples of other

[1:03:43] states supported decision making laws,

[1:03:45] and we've done a lot of related

[1:03:46] analysis of

[1:03:48] those laws that I'm gonna be talking

[1:03:49] a little bit about

[1:03:50] today.

[1:03:53] So first off, you know, we are seeing

[1:03:55] over the last decade more and

[1:03:56] more states enact

[1:03:58] supported decision making laws.

[1:03:59] We're up to now at least 40

[1:04:01] states and the District of

[1:04:02] Columbia that have passed

[1:04:03] legislation referring to

[1:04:05] supported decision making in various

[1:04:06] ways, and this

[1:04:08] map of the United States

[1:04:09] highlights some of the key trends

[1:04:10] in state laws that we're seeing

[1:04:12] around supported decision

[1:04:13] making. States

[1:04:15] are approaching it differently,

[1:04:16] but we've highlighted some trends

[1:04:18] here that we're seeing.

[1:04:19] Um, one common way, as I've

[1:04:21] said, in recognizing supported

[1:04:22] decision making in state laws has

[1:04:24] been codifying a legal

[1:04:25] framework of supported

[1:04:27] decision making agreements

[1:04:28] that includes certain safeguards

[1:04:30] and protections and try to

[1:04:31] promote third party,

[1:04:33] uh reliance upon

[1:04:35] those agreements, um,

[1:04:36] and also clarity of what

[1:04:38] those agreements mean.

[1:04:40] Um, those states are marked in purple

[1:04:41] or have a purple star

[1:04:43] and include 24 states and

[1:04:44] the District of Columbia.

[1:04:46] As Brian emphasized, that's what

[1:04:48] House Bill 3906

[1:04:49] in Oklahoma sought to

[1:04:50] do. And

[1:04:52] so we also have at least

[1:04:53] 23 states that have passed

[1:04:55] laws that formally

[1:04:56] recognize supported decision

[1:04:58] making as an auxiliator

[1:04:59] service to prevent

[1:05:01] discrimination and access to

[1:05:02] organ transplantation.

[1:05:04] and these are marked in

[1:05:05] yellow or with the yellow star,

[1:05:07] and these laws often

[1:05:09] require medical providers to

[1:05:10] facilitate the provision.

[1:05:12] Of these kinds of aids to ensure

[1:05:13] that people with disabilities have

[1:05:15] equal access

[1:05:17] to certain kinds of medical

[1:05:18] transplants. And as

[1:05:20] Brian said, Oklahoma is one of

[1:05:21] those states that have passed such

[1:05:22] laws and it recognizes

[1:05:24] supported decision making within a

[1:05:25] framework of being a

[1:05:27] reasonable accommodation for a

[1:05:28] person's disability.

[1:05:30] Um, at least 18

[1:05:32] states have passed laws that

[1:05:33] require courts or people

[1:05:35] petitioning for guardianship

[1:05:36] to consider supported decision

[1:05:38] making as a less restrictive

[1:05:39] option. These states are marked

[1:05:40] in green or with a green

[1:05:42] star on this map.

[1:05:43] Oklahoma is one such state,

[1:05:45] um, and it's also codified a

[1:05:47] definition of supported decision

[1:05:48] making that's modelled upon the

[1:05:49] Uniform Law

[1:05:51] Commission's 2017 model

[1:05:52] guardianship law,

[1:05:54] um, which requires core

[1:05:56] consideration of supported decision making

[1:05:57] as a less restrictive

[1:05:59] option.

[1:06:01] And then we have at least 9 states

[1:06:02] in DC that have passed laws that

[1:06:04] have recognized supported decision

[1:06:05] making within transition

[1:06:06] planning and transfer of

[1:06:08] right discussions for adult

[1:06:09] students with disabilities.

[1:06:11] Such laws typically enable

[1:06:13] adult students to include supporters

[1:06:15] in discussions about

[1:06:16] educational decision making.

[1:06:17] And they're seeking to kind

[1:06:19] of, you know, address

[1:06:20] some of what has been identified as

[1:06:22] a school to guardianship pipeline

[1:06:23] for people with disabilities to try

[1:06:25] to ensure the families

[1:06:26] know the full range of options that

[1:06:28] are available for

[1:06:29] young adults who are in

[1:06:31] a special education

[1:06:33] age. States that

[1:06:34] have passed such laws are marked

[1:06:35] in blue or with a blue

[1:06:37] star. And finally,

[1:06:38] we're seeing another emerging trend

[1:06:40] that's happened in at least 4

[1:06:41] states which are marked with an orange

[1:06:43] star, and these states have

[1:06:44] recognized supported

[1:06:46] decision making as a reasonable accommodation

[1:06:47] relevant to making informed

[1:06:49] healthcare decisions.

[1:06:50] And 3 of the 4,

[1:06:52] Delaware, Oklahoma, and Utah

[1:06:54] have enacted the uniform. Healthcare

[1:06:55] Decisions Act, which was updated

[1:06:57] in 2023,

[1:06:58] that really recognizes that

[1:07:00] individuals have capacity for

[1:07:01] the purpose of making covered

[1:07:03] healthcare decisions when

[1:07:04] they're able to communicate

[1:07:06] decisions independently or with

[1:07:07] appropriate services,

[1:07:09] including supported decision making

[1:07:10] or other reasonable accommodation.

[1:07:13] And as I said, Oklahoma was one of

[1:07:14] those states that passed this kind of

[1:07:15] legislation which was approved by the

[1:07:17] governor on May 12,

[1:07:18] 2026.

[1:07:20] So you can see from this map that there

[1:07:21] are different ways to codify

[1:07:23] supported decision making,

[1:07:24] but another thing you see in this

[1:07:26] map is that the

[1:07:27] majority of states that have passed

[1:07:29] these kinds of laws

[1:07:30] have also codified

[1:07:31] supported decision making

[1:07:33] in more than one way.

[1:07:34] And what I mean by that is that they're

[1:07:36] looking for gaps within their

[1:07:37] own system about really

[1:07:39] making supported decision

[1:07:40] making more of the norm,

[1:07:42] more considered, you know, part

[1:07:43] of that kind of toolkit,

[1:07:45] um, toolbox to be

[1:07:47] considering when supporting

[1:07:48] people with disabilities and others who

[1:07:50] might need support with decision

[1:07:51] making.

[1:07:54] Now I'm gonna take a deeper dive

[1:07:56] into those 24 states

[1:07:58] that are plus DC that have

[1:07:59] passed comprehensive supported

[1:08:01] decision making agreement legislation.

[1:08:03] And when I use that word

[1:08:04] comprehensive supported

[1:08:06] decision-making agreement legislation, I'm

[1:08:07] talking about

[1:08:09] state laws that have created

[1:08:10] legal frameworks for

[1:08:11] recognizing formal

[1:08:13] agreements between a

[1:08:14] decision maker and their supporters.

[1:08:16] And I think here terminology

[1:08:18] is really important. When I talk

[1:08:19] about a decision maker,

[1:08:21] I'm talking about

[1:08:22] kind of the principal, the person

[1:08:24] who is the

[1:08:25] person who makes decisions

[1:08:27] with the support of people that they

[1:08:28] trust. When I talk

[1:08:30] about supporters, I'm talking

[1:08:31] about those people that they trust.

[1:08:33] So I do think we have to be careful in

[1:08:35] our terminology and not use

[1:08:36] terms like supported decision

[1:08:37] maker. Supporters

[1:08:39] don't make decisions for the person.

[1:08:41] They support a person in

[1:08:42] making the making the

[1:08:44] decisions for themselves.

[1:08:45] Um, you know, I think this

[1:08:47] kind of, I think part of the

[1:08:48] reason why this kind

[1:08:50] of gained some

[1:08:51] real traction in the United

[1:08:53] States over the last decade had

[1:08:54] to do with the fact that the first

[1:08:56] supported decision making law that was

[1:08:57] passed in Texas in

[1:08:59] 2015.

[1:09:01] was a supported decision making

[1:09:02] agreement legislation and it was

[1:09:04] part of a kind of

[1:09:05] overhaul of the state's

[1:09:07] guardianship system.

[1:09:09] So it was also really

[1:09:10] focused about promoting

[1:09:12] less restrictive options and

[1:09:13] consideration of those options.

[1:09:15] And then it created a legal

[1:09:16] framework. for recognizing

[1:09:18] formally supported decision

[1:09:20] making agreements.

[1:09:21] And so since the now the

[1:09:22] most recent state has been Kansas

[1:09:24] in 2026. So

[1:09:26] there has been a kind of

[1:09:27] popularity associated

[1:09:29] with this particular kind of

[1:09:30] way of formally recognizing

[1:09:32] supported decision

[1:09:32] making.

[1:09:35] Now we've delved in with

[1:09:37] my office, we've delved and

[1:09:38] analyzed these kind of supported

[1:09:40] decision making agreement legislation

[1:09:41] very closely to kind

[1:09:43] of identify trends and

[1:09:44] some food for thought for

[1:09:45] states considering going down this

[1:09:47] path. Um,

[1:09:49] you know, just because something might be

[1:09:50] popular in terms of, uh, you

[1:09:51] know, being a a way of going,

[1:09:53] it doesn't mean that it works for

[1:09:55] everybody. And so really thinking

[1:09:56] critically. Um, and we've

[1:09:57] seen some really promising

[1:09:59] ways of thinking critically about

[1:10:00] those laws. So in the beginning,

[1:10:02] uh, people were just kind of or

[1:10:03] states were kind of adopting

[1:10:05] Texas's law without

[1:10:07] really thinking through

[1:10:08] how it would work in their states or

[1:10:09] their improvements that could be

[1:10:11] made. And I think when we

[1:10:12] look at

[1:10:14] You know, the Oklahoma legislation

[1:10:15] that was introduced, we see some of

[1:10:17] those promising trends of

[1:10:18] thinking about this kind of

[1:10:20] creatively and not just being cookie

[1:10:21] cutter about this.

[1:10:23] Um, we see that kind of entering

[1:10:24] into that legislation, and I think that's

[1:10:26] promising. I think you have to figure

[1:10:27] out what's going to work

[1:10:29] best in Oklahoma,

[1:10:30] what's gonna work best for the people

[1:10:32] here. Um, so

[1:10:33] the first thing I really think about

[1:10:35] is it, it goes back to,

[1:10:36] I think, um,

[1:10:38] someone who spoke here and it's

[1:10:40] difficult for me to see completely here,

[1:10:41] but talked about, well, how is

[1:10:43] this different than informal

[1:10:45] supported decision making.

[1:10:46] And I think in recognizing

[1:10:48] supported decision making, and if you're

[1:10:49] thinking about really trying to

[1:10:50] codify legal structures

[1:10:52] for it, I think it's important

[1:10:53] to recognize that

[1:10:55] supported decision making arrangements are

[1:10:57] not all formal in nature.

[1:10:58] Many more people use

[1:11:00] informal supported decision

[1:11:01] making every day.

[1:11:03] Including people with and without

[1:11:04] disabilities.

[1:11:06] And there are many ways that

[1:11:07] you can document those kinds

[1:11:08] of relationships short

[1:11:10] of formal supported decision making

[1:11:12] agreements. We

[1:11:13] need to make sure that in trying to

[1:11:14] promote recognition of supported

[1:11:16] decision making, we are not

[1:11:18] saying that everybody needs to have a

[1:11:19] supported decision making agreement to use

[1:11:20] it, OK? It's just another

[1:11:22] tool in the toolbox that

[1:11:23] people who want to have a written

[1:11:25] agreement like that

[1:11:26] can use if they

[1:11:28] want to use it.

[1:11:29] Uh, we really want to be promoting

[1:11:31] flexibility and

[1:11:32] individualization within those kinds

[1:11:33] of arrangements.

[1:11:36] Well some individuals may opt to

[1:11:38] create that kind of formal supported

[1:11:39] decision making arrangement that conforms

[1:11:41] with their state laws, others

[1:11:42] may prefer the more kind of flexible

[1:11:44] and informal approach, and I

[1:11:46] think that needs to continue to

[1:11:47] be allowed because supported decision

[1:11:49] making in many ways is human

[1:11:50] decision making. I think perhaps

[1:11:52] we give it a special or

[1:11:54] special kind of phrase when

[1:11:55] we're talking about people with disabilities

[1:11:57] or older adults just to

[1:11:58] remind ourselves that

[1:11:59] people may need more support in

[1:12:01] making decisions, but that doesn't mean

[1:12:02] they can't make decisions at

[1:12:03] all. Um,

[1:12:05] creating a kind of legal framework

[1:12:07] can really help with third-party

[1:12:08] enforceability,

[1:12:10] as well as addressing

[1:12:11] concerns which we live in a

[1:12:12] in a litigious liability

[1:12:14] fields concerned

[1:12:16] society. And so it addresses

[1:12:17] that piece of this as

[1:12:18] well. Um,

[1:12:20] several state laws

[1:12:22] recognize that

[1:12:23] people may prefer to

[1:12:25] act independently

[1:12:27] without using their supporters in certain

[1:12:28] circumstances, even if they have

[1:12:30] a supported decision making

[1:12:31] agreement. And they recognize

[1:12:33] that possibility

[1:12:34] expressly, and that's

[1:12:35] what the, the House

[1:12:37] bill that was introduced did.

[1:12:38] It recognized that people

[1:12:40] just because you have a supportive decision-making

[1:12:41] agreement doesn't mean that you

[1:12:43] don't, can't, you know,

[1:12:44] act independently of your

[1:12:46] supporters because you haven't ceded

[1:12:47] any type of authority

[1:12:49] to someone else.

[1:12:51] Um, and so, you know, I

[1:12:52] think that's a very positive trend

[1:12:54] in recognizing that people can

[1:12:55] continue to use informed

[1:12:57] decision making support as well as

[1:12:58] act independently.

[1:13:00] This is, you know, it's just creating

[1:13:02] a legal framework for those who

[1:13:03] want to use it.

[1:13:05] Um,

[1:13:06] However, you know, the other piece I

[1:13:08] think is really important to kind of

[1:13:09] keep in mind is

[1:13:11] when you're when you're balancing

[1:13:13] safeguards versus

[1:13:14] barriers to access. And what I mean

[1:13:15] when I say this is that,

[1:13:17] you know, we need to think

[1:13:19] really carefully

[1:13:20] about How,

[1:13:22] you know, um, in

[1:13:23] seeking to try to safeguard

[1:13:25] people that we may see as

[1:13:26] vulnerable, are we

[1:13:27] actually creating barriers

[1:13:29] to access? And when

[1:13:31] I talk about this, I talk

[1:13:32] about, you know, we have to remember what

[1:13:34] a supported decision making

[1:13:35] agreement does and doesn't

[1:13:36] do.

[1:13:38] And that's what a legal framework can

[1:13:39] help with in understanding what

[1:13:41] it does and doesn't do.

[1:13:43] So the supporters under

[1:13:44] a supported decision making agreement

[1:13:46] do not have the authority to

[1:13:47] make decisions on behalf of the

[1:13:49] person who's who

[1:13:51] who who they're supporting.

[1:13:52] In that sense, they have very

[1:13:54] little authority. They can't

[1:13:55] sign on the dotted line of a

[1:13:57] document on behalf of someone. They

[1:13:58] can't enter into a loan.

[1:14:00] They're not the guardian of the person

[1:14:02] overseen by the court with all the

[1:14:03] fiduciary responsibilities

[1:14:05] associated with that.

[1:14:06] They are assisting the person

[1:14:08] in understanding the

[1:14:09] choices that they face

[1:14:11] to be able to ask

[1:14:12] questions, to be able to get

[1:14:14] advice, to access information

[1:14:15] they need to make a decision,

[1:14:17] and then help communicating

[1:14:18] that decision for others.

[1:14:20] So when we talk about kind of

[1:14:22] the safeguards for that,

[1:14:24] why would the safeguards

[1:14:25] be, they certainly

[1:14:26] wouldn't have to be what they would have to

[1:14:28] be for a power of attorney,

[1:14:29] where the power of attorney is actually

[1:14:31] giving the agent under a power

[1:14:33] of attorney the authority to act

[1:14:34] for the person under

[1:14:36] certain circumstances, and

[1:14:37] instead of the person in certain

[1:14:39] circumstances. So I

[1:14:40] think it's a really careful balance

[1:14:42] in thinking through

[1:14:42] that.

[1:14:44] Another piece to really think

[1:14:46] about carefully when thinking

[1:14:47] about supported decision making and

[1:14:49] agreement laws is their applicability

[1:14:51] and whether certain individuals are

[1:14:52] excluded from the

[1:14:54] law's protections.

[1:14:55] So while many of the SDMA

[1:14:57] laws that are on the books

[1:14:58] allow a decision maker to be any

[1:15:00] adult, others are

[1:15:02] limited to people with disabilities

[1:15:03] or people with particular types of

[1:15:05] disabilities.

[1:15:06] For example, in at least 11

[1:15:08] states in DC, they the

[1:15:10] supported decision making agreement law only

[1:15:11] applies to people

[1:15:12] disabilities. And

[1:15:13] another two are limited to people with

[1:15:15] intellectual or developmental disabilities.

[1:15:17] And I really think that those kinds of

[1:15:18] exclusions

[1:15:19] create access barriers by

[1:15:21] preventing individuals who don't

[1:15:22] necessarily satisfy that statutory

[1:15:24] criteria from benefiting from

[1:15:25] the law's protections.

[1:15:27] And they also move away from the

[1:15:29] principles of universal

[1:15:30] design and may stigmatize

[1:15:32] the use of SDMAs or

[1:15:33] SDM agreements through

[1:15:35] the ableism or biases against

[1:15:36] people with disabilities. And so we're

[1:15:38] seeing a trend

[1:15:39] to make Supported

[1:15:41] decision making agreements available to

[1:15:42] all, and that's

[1:15:44] what um Oklahoma's

[1:15:45] proposed legislation would have

[1:15:46] done.

[1:15:50] I think if I had to

[1:15:51] characterize

[1:15:53] like the biggest

[1:15:54] reason why

[1:15:56] states are considering creating

[1:15:57] legal frameworks for supported

[1:15:59] decision-making agreements that are

[1:16:00] formal

[1:16:01] arrangements, um, it's

[1:16:03] it's about effective

[1:16:04] third party recognition and

[1:16:05] enforceability

[1:16:07] and the existing laws that are out

[1:16:08] there very widely and the

[1:16:10] extent to which they prescribe

[1:16:12] requirements for a legally valid

[1:16:13] supported decision making

[1:16:14] agreement. Some laws,

[1:16:16] for example, require

[1:16:17] individuals to substantially

[1:16:19] follow a statutory

[1:16:20] form like a power of

[1:16:22] attorney, like when

[1:16:23] you have to follow, substantially

[1:16:25] follow that kind of form,

[1:16:26] while others simply set forth

[1:16:28] categories for information

[1:16:30] that the SDM agreement

[1:16:31] must include.

[1:16:33] Laws also um

[1:16:34] impose various execution

[1:16:36] requirements, such as the presence

[1:16:37] of a witness to satisfy

[1:16:39] certain criteria or

[1:16:40] notarization or

[1:16:42] the inclusion of certain kind of

[1:16:43] supporter declarations.

[1:16:45] And while those kinds of execution

[1:16:47] and validity requirements may enhance

[1:16:49] the credibility of the

[1:16:50] supported decision-making agreement in the

[1:16:52] eyes of third parties, they

[1:16:53] also have and they also come

[1:16:55] with costs that you need to

[1:16:56] think through. For

[1:16:58] example, a notarization

[1:16:59] requirement may pose

[1:17:00] accessibility issues for people

[1:17:02] who don't have easy access to

[1:17:03] transportation or

[1:17:05] funds to pay a notary.

[1:17:07] Similarly, statutory

[1:17:08] forms can create useful

[1:17:09] templates for people drafting

[1:17:11] supported decision making agreements,

[1:17:13] and like Brian said, easy

[1:17:15] recognizability for

[1:17:16] third parties, like we know what this

[1:17:18] form looks like.

[1:17:19] But requiring a universal

[1:17:21] adoption of those kinds of

[1:17:22] forms can also result in barriers

[1:17:24] for people with different communication

[1:17:26] modes or needs. And so

[1:17:27] some states have taken steps to

[1:17:29] try to promote accessibility of

[1:17:30] those forms and really allow

[1:17:32] supported decision making agreements

[1:17:34] to take different forms

[1:17:35] based on the needs of the decision maker.

[1:17:37] And so that's something to consider when

[1:17:38] you're thinking about this kind of

[1:17:39] legislation.

[1:17:43] When I also think about like

[1:17:45] enforceability, it

[1:17:46] comes down to the

[1:17:48] strength of the

[1:17:49] indemnity clauses

[1:17:51] that are in the

[1:17:52] legislation. And when I say that

[1:17:54] I'm, I'm trying to respond

[1:17:55] to third parties

[1:17:57] real fears related to

[1:17:58] liability.

[1:18:00] And so supported decision-making

[1:18:01] agreement laws can play a really critical

[1:18:03] role in mitigating those

[1:18:04] concerns by incorporating

[1:18:06] provisions that shield third

[1:18:08] parties from liability when they

[1:18:09] rely on supported decision-making

[1:18:11] agreements in good faith.

[1:18:13] And to answer another question that

[1:18:14] had come up

[1:18:16] about whether or not laws

[1:18:17] ever indemnify

[1:18:19] supporters who act in good

[1:18:20] faith, there

[1:18:21] are there are

[1:18:23] a couple of statutes

[1:18:24] that do include specific

[1:18:26] provisions to try to protect

[1:18:27] supporters from liability as

[1:18:29] well in those

[1:18:30] cases.

[1:18:32] Uh, it's really important to have a

[1:18:34] strong statutory definition

[1:18:35] of supported decision making.

[1:18:37] Um, unfortunately, not all

[1:18:39] laws do.

[1:18:40] Um, and it's, it's good. I

[1:18:42] think that Oklahoma does have

[1:18:44] already in the books a law that

[1:18:45] defines supported decision-making

[1:18:46] agreement to have kind of a

[1:18:48] comprehensive definition and

[1:18:50] describe its kind of core principles,

[1:18:52] and doing so can really

[1:18:53] help to make sure it aligns with

[1:18:55] the principles of supported decision

[1:18:56] making and avoid

[1:18:58] what I call unintended

[1:18:59] unintended consequences associated

[1:19:01] with codification.

[1:19:02] OK. Like everything, there can be

[1:19:04] unintended consequences

[1:19:06] when you take something that

[1:19:07] has worked informally,

[1:19:09] um, and, and try to formalize

[1:19:11] it. If you make it

[1:19:12] too prescriptive, if you make your

[1:19:14] law too prescriptive,

[1:19:15] and I think we have to be really careful

[1:19:17] not to mutate

[1:19:18] what supported decision making

[1:19:20] means when we seek to formalize

[1:19:21] it. I have seen formal

[1:19:23] definitions of supported decision

[1:19:25] making and proposed legislation

[1:19:26] that aren't faithful to

[1:19:28] the true meaning of the term.

[1:19:29] Um, you know, I think we have to

[1:19:31] remember, I call it the curse

[1:19:33] of too many SDM

[1:19:34] acronyms.

[1:19:35] Supported decision making is

[1:19:36] different than substitute

[1:19:38] decision making when someone

[1:19:40] else, like an agent

[1:19:41] under a power of attorney

[1:19:43] or a guardian makes the decision

[1:19:44] for the person,

[1:19:46] and supported decision making is

[1:19:47] different than shared decision

[1:19:48] making, where there's a

[1:19:50] decision is only made when

[1:19:51] the person and their supporters all

[1:19:53] agree. So

[1:19:54] really thinking very closely

[1:19:56] about that when you're thinking about

[1:19:57] putting in these kind of guardrails

[1:19:59] to assist people in enforcing these

[1:20:01] arrangements is very

[1:20:02] important.

[1:20:04] I also think another thing to be

[1:20:05] very important, uh, to think

[1:20:07] through very carefully

[1:20:08] about, you know, the safeguards that

[1:20:10] are built into bills

[1:20:11] like this is

[1:20:13] not to be overprotective,

[1:20:15] um, in thinking about

[1:20:16] supported decision-making

[1:20:17] arrangements as

[1:20:19] I've said, you know, I think it's

[1:20:20] important to keep in mind

[1:20:22] when you're thinking about those safeguards,

[1:20:23] what supported decision-making

[1:20:25] agreements do and what they

[1:20:26] don't do. And supported

[1:20:28] decision-making agreements really don't give

[1:20:29] a lot of power to

[1:20:30] supporters. Supporters

[1:20:32] are advisors. They

[1:20:33] help the person.

[1:20:35] Um, in making certain kinds of

[1:20:37] decisions. powers of

[1:20:38] attorney give far more

[1:20:39] authority to agents

[1:20:41] to actually act

[1:20:43] instead of the person.

[1:20:44] Um, I've heard powers of

[1:20:45] attorney called within the elder

[1:20:47] justice, um,

[1:20:48] space a license to

[1:20:50] steal because they give so much

[1:20:51] authority to the agents.

[1:20:53] That's not the case with a supported

[1:20:54] decision-making agreement. It

[1:20:56] doesn't give those supporters that kind of

[1:20:57] authority. And so really thinking

[1:20:59] carefully before you impose

[1:21:00] any kind of disqualifying

[1:21:02] provisions or anything

[1:21:03] like that on who can serve as a

[1:21:05] formal supporter for someone

[1:21:07] is really important. And that's why

[1:21:08] I really do recommend when we're

[1:21:09] thinking about safeguards,

[1:21:11] um, to be think about incorporating

[1:21:13] in supported decision-making agreement

[1:21:15] legislation.

[1:21:16] is reminding people,

[1:21:17] is reminding people like House Bill

[1:21:19] 3906 does

[1:21:20] that there is

[1:21:21] already existing

[1:21:23] mandatory reporting

[1:21:24] requirements for suspected

[1:21:25] abuse under state

[1:21:26] laws. OK. Those

[1:21:28] are already existing and on

[1:21:29] the books. And

[1:21:31] so, let's not

[1:21:32] be too overly robust

[1:21:33] in so-called safeguards that can

[1:21:35] in practice be barriers to

[1:21:36] access for people and

[1:21:38] prevent them from choosing people they

[1:21:40] trust to help them under

[1:21:41] a formal supported

[1:21:43] decision-making agreement

[1:21:43] legislation.

[1:21:46] I also think we have to

[1:21:47] find ways to measure

[1:21:48] the impact of reforms

[1:21:50] when these kinds of initiatives

[1:21:52] are undertaken. cause I

[1:21:54] know I'm gonna get questions about which

[1:21:55] of these supported decision-making

[1:21:57] agreement laws have been most

[1:21:58] successful, um, cause

[1:21:59] I get that question all the time. And the

[1:22:01] reality is, is that

[1:22:02] states aren't really measuring

[1:22:04] it as well as they should be measuring

[1:22:05] it. You know, I

[1:22:07] think, you know, what I can say,

[1:22:08] like for example, Wisconsin,

[1:22:10] who was one of the early

[1:22:11] supported decision-making agreement.

[1:22:13] Um, adopters,

[1:22:15] um, they did look to

[1:22:16] see the impact on the number of

[1:22:17] guardianship petitions that were

[1:22:19] filed, and over the course of a

[1:22:20] three-year period after

[1:22:22] the bill to create

[1:22:23] STM

[1:22:24] agreements existed

[1:22:26] and was introduced, they saw a

[1:22:27] 20% decrease in

[1:22:28] petitions.

[1:22:30] Um, you know, so they, there

[1:22:31] is some efforts to

[1:22:32] measure the impact

[1:22:34] of these legislations

[1:22:35] on guardianship petitions and

[1:22:37] whether it's making it so that

[1:22:38] those guardianship petitions that are

[1:22:40] unnecessary or not

[1:22:41] really needed, um,

[1:22:43] it's addressing that particular

[1:22:45] problem, um, but we have

[1:22:46] to, as a state, we should

[1:22:48] figure out a way to really

[1:22:49] measure, um, what the

[1:22:51] impact on this is because I always

[1:22:52] say in consulting on these

[1:22:53] kinds of projects, we collect, we as

[1:22:55] a society collect data about

[1:22:56] things we care about.

[1:22:58] And we should care about people's

[1:22:59] rights to make decisions.

[1:23:01] And unfortunately, kind of across

[1:23:03] the country, guardianship data

[1:23:04] is very

[1:23:05] uneven,

[1:23:07] um, and there really does need

[1:23:08] to be a kind of concerted

[1:23:10] effort to see the real

[1:23:11] impact of these laws and how they can

[1:23:13] be improved upon, uh,

[1:23:14] and tweaked if need be over

[1:23:16] time.

[1:23:18] I'm happy to answer any

[1:23:20] questions. Um, I included within

[1:23:21] these slides my contact

[1:23:23] information as well. Um,

[1:23:24] and I wanted to open the

[1:23:26] floor for questions now,

[1:23:27] or if you wanted to wait, I,

[1:23:29] um, Representative,

[1:23:30] I saw that you had

[1:23:32] allotted questions later

[1:23:33] on the in the,

[1:23:35] in the agenda, so I'll defer

[1:23:36] to

[1:23:36] you.

[1:23:40] >> Representative Deck,

[1:23:42] you're ready or

[1:23:43] who?

[1:23:46] >> Thank you, Chairman.

[1:23:48] Um, thank you. That was

[1:23:50] excellent. Um, I do have

[1:23:51] a, uh, really

[1:23:52] one question. Are there any other states

[1:23:54] doing any kind of

[1:23:55] education process,

[1:23:57] um, for the

[1:23:59] deci, uh,

[1:24:00] supportive decision makers?

[1:24:02] Is there continuing education?

[1:24:03] How does, how does that operate?

[1:24:05] >> You know, we're seeing more and

[1:24:07] more states actually

[1:24:08] incorporate into

[1:24:10] their supported decision making

[1:24:11] agreement legislation

[1:24:13] specific educational

[1:24:14] components. So for

[1:24:16] example, in Illinois,

[1:24:17] um, there was

[1:24:19] a commission that was

[1:24:21] tasked with providing

[1:24:23] education to supporters and

[1:24:24] decision makers about

[1:24:26] what supported decision making

[1:24:27] agreements were or weren't.

[1:24:29] In California, there was a

[1:24:31] specific kind of technical assistance

[1:24:32] center that was created that was going to

[1:24:34] be providing wider

[1:24:36] education. I would say

[1:24:37] that's one of the more

[1:24:38] promising

[1:24:39] practices I would say

[1:24:41] because I think, you know,

[1:24:42] you need, I think there needs to be a

[1:24:44] real understanding

[1:24:45] in communities

[1:24:47] about what supported decision making

[1:24:48] agreements are and

[1:24:50] aren't.

[1:24:51] And A

[1:24:53] concerted effort,

[1:24:55] um, and provisions

[1:24:56] for that in legislation,

[1:24:58] I think are very

[1:24:59] promising.

[1:25:11] >> Thank you so much. um,

[1:25:12] appreciate if you just hang on a little bit there

[1:25:14] may be some other questions as

[1:25:15] we get to the end. Um,

[1:25:17] I would like to, uh,

[1:25:18] recognize our next presenters.

[1:25:20] Um, I

[1:25:22] have known, uh,

[1:25:24] um, Heather Pike and Leighton

[1:25:25] Pike for a while

[1:25:27] and as Leighton's

[1:25:28] grown up, uh,

[1:25:30] these questions have come up

[1:25:31] with his mom and I have

[1:25:32] talked about it. So

[1:25:34] Leighton, there's a a button that you

[1:25:35] wanna push uh

[1:25:36] to have the

[1:25:37] microphone.

[1:25:39] And you and your mom are both gonna

[1:25:40] speak, but Leighton, will

[1:25:41] you introduce

[1:25:42] yourself?

[1:25:46] >> I um, I'm

[1:25:47] waiting

[1:25:49] and

[1:25:50] um I've

[1:25:51] just been looking

[1:25:53] for a job

[1:25:55] and

[1:25:57] >> how you are and

[1:25:57] >> I'm

[1:26:00] 28.

[1:26:04] and I live in Edmond,

[1:26:05] Oklahoma.

[1:26:09] What >> what do you just tell him some things

[1:26:11] you like to

[1:26:11] do.

[1:26:13] >> Um,

[1:26:16] I just like to

[1:26:18] um

[1:26:21] detail cars

[1:26:22] and.

[1:26:24] And all

[1:26:25] and all that

[1:26:26] stuff.

[1:26:28] Yeah.

[1:26:30] I actually work at

[1:26:32] um Jackie Cooper

[1:26:33] BMW.

[1:26:35] And I haven't been there

[1:26:37] since like

[1:26:39] October

[1:26:41] of 2

[1:26:42] years.

[1:26:45] So I've been looking for a

[1:26:47] job everywhere.

[1:26:49] >> What are some things you like to do for

[1:26:50] fun?

[1:26:52] >> Um, hang out with my

[1:26:53] nephews,

[1:26:54] um,

[1:26:56] And my sister

[1:26:57] and

[1:26:59] And I like hanging out with my

[1:27:00] dog,

[1:27:01] Marley.

[1:27:04] Uh, what are some things

[1:27:05] you

[1:27:09] Oh, and

[1:27:11] I would

[1:27:12] I always want to get a

[1:27:14] driver's license.

[1:27:16] Yeah.

[1:27:20] huh? where do you want to

[1:27:20] live?

[1:27:23] Um, and I would like

[1:27:24] to live um

[1:27:26] by myself while I'm

[1:27:27] like 32 or

[1:27:29] 33

[1:27:30] years old.

[1:27:32] >> Heather, you have him till 32 or

[1:27:33] 33. That's great.

[1:27:35] It's funny because >> he

[1:27:36] said

[1:27:38] >> I remember, I

[1:27:39] remember,

[1:27:40] I remember, I

[1:27:41] remember.

[1:27:43] How long have you been interested in cars,

[1:27:45] Leighton?

[1:27:46] >> Um,

[1:27:48] I've been

[1:27:50] Uh, since you were

[1:27:52] a baby, baby,

[1:27:54] since when I was like,

[1:27:55] baby, >> your whole

[1:27:57] life. I like as long as I've

[1:27:58] known you since you were little, you've always

[1:28:00] talked and brought cars with

[1:28:01] you and talking about

[1:28:03] cars. Yeah.

[1:28:05] So currently, do you have

[1:28:06] a job or you're looking for a

[1:28:08] job? >> I'm looking

[1:28:09] for a a

[1:28:10] second job.

[1:28:12] >> How many hours do you get a week?

[1:28:14] >> Um,

[1:28:16] right now. None

[1:28:18] right now.

[1:28:20] >> Heather, do you want to give us a

[1:28:22] little information about,

[1:28:23] especially talking with the,

[1:28:25] introduce yourself and then tell

[1:28:26] us a little bit about the

[1:28:28] conversations about Leighton, especially a

[1:28:29] job and living at 32

[1:28:31] or 33 by himself,

[1:28:33] um, and, uh, guardianship

[1:28:34] and support of decision making.

[1:28:36] >> Sure, so my name is Heather.

[1:28:38] Pike, I am Leighton's

[1:28:39] mom. Leighton also has an

[1:28:41] older sister, and he mentioned

[1:28:42] his two nephews that he spends a

[1:28:43] lot of time with.

[1:28:45] Um, and she's definitely,

[1:28:47] you know, one of his bigger

[1:28:49] supporters and helping him

[1:28:50] make decisions

[1:28:51] and things like that. But the older he

[1:28:53] gets, the bigger those decisions

[1:28:54] get. Um,

[1:28:56] and the bigger his goals,

[1:28:57] you know, get that we want to help

[1:28:59] him achieve those goals.

[1:29:01] Um, so being his mom and

[1:29:02] speaking on behalf of

[1:29:03] just informal

[1:29:05] and potentially more

[1:29:06] formal supported

[1:29:08] decision making is something that I'm

[1:29:09] really interested in.

[1:29:11] Um, as his mom,

[1:29:12] we're my husband and I

[1:29:14] try to take care of ourselves because

[1:29:15] we know we need to live as long as,

[1:29:17] you know, we want to live as long as we

[1:29:18] can to make sure Leighton

[1:29:20] has the best life possible

[1:29:21] and we're around to see that

[1:29:23] through. But, you know, we

[1:29:24] need as families

[1:29:26] a safety net

[1:29:27] for that.

[1:29:28] Currently, we have

[1:29:30] power of attorney for medical and

[1:29:31] financial for Leighton,

[1:29:33] um, but having another

[1:29:34] option would be, um,

[1:29:36] you know, beneficial and

[1:29:37] also kind of, you

[1:29:39] know, give us, um, like I

[1:29:40] said, that safety net

[1:29:42] of making sure that he

[1:29:43] is surrounded by people that know

[1:29:45] him and love him and

[1:29:46] can support him in those

[1:29:47] decisions, such as living by

[1:29:49] himself someday.

[1:29:50] Um. We use

[1:29:52] this supported decision

[1:29:54] making and I these

[1:29:55] conversations have been helpful in, you

[1:29:57] know, helping me gather

[1:29:58] some thoughts too that maybe I didn't

[1:30:00] write down, but we all

[1:30:01] use those informal

[1:30:03] supported decision making, you know, on

[1:30:04] a daily basis with our

[1:30:06] spouses, with our neighbours, with

[1:30:07] our, you know, siblings,

[1:30:09] with our parents, um, and

[1:30:10] it's no different in the

[1:30:12] lives of those with

[1:30:13] disabilities,

[1:30:14] um, and we want them

[1:30:16] to be as independent as

[1:30:17] possible, um, you know, some

[1:30:18] of those simple things could

[1:30:20] be Um,

[1:30:21] just today, as Leighton

[1:30:23] was getting dressed to come up

[1:30:24] here, he was putting on

[1:30:26] shorts, which it's hot

[1:30:27] outside, so I'm fine with,

[1:30:29] but had a North

[1:30:30] Face graphic t-shirt

[1:30:32] and I was like, we're

[1:30:33] going to the Capitol. Do you

[1:30:35] think that's the, you know,

[1:30:36] the right shirt you should be wearing

[1:30:38] today? So he pulls out

[1:30:39] a collared shirt, as he

[1:30:41] refers to as a, I have

[1:30:42] to wear a church

[1:30:43] shirt.

[1:30:45] And, um, put that on

[1:30:47] and, you know, I just

[1:30:48] tried to support him in that decision.

[1:30:50] Is that the best decision for

[1:30:51] you to make today?

[1:30:52] Um, something else we do a

[1:30:54] lot on a daily basis

[1:30:55] is talk about

[1:30:57] our choices as we get

[1:30:59] older for, um, what

[1:31:00] we put in our bodies.

[1:31:02] Um, do we need to drink Doctor

[1:31:03] Pepper every

[1:31:05] time that

[1:31:06] we, and

[1:31:07] he's laughing because

[1:31:09] he stopped by Chick fil A on the

[1:31:10] way here and

[1:31:12] Requested a Dr. Pepper. And I

[1:31:13] was like, Well, did you drink

[1:31:15] your water this morning?

[1:31:16] Yes, I drank a big cup of

[1:31:18] water this morning. So,

[1:31:19] just trying to help support him

[1:31:20] in those decisions, not

[1:31:22] telling him, you can't have

[1:31:23] this or you can't do this,

[1:31:25] but you're an adult,

[1:31:26] so let's figure out the best,

[1:31:28] you know, the best

[1:31:29] decisions that that you can make,

[1:31:31] um, for the goals that you have for

[1:31:33] yourself.

[1:31:33] Um, In

[1:31:35] looking at just, you

[1:31:36] know, some of the building

[1:31:38] up to being a 28

[1:31:40] year old adult,

[1:31:41] um, you know, he does have

[1:31:43] some goals, um,

[1:31:45] I will say that,

[1:31:46] um, we try to be very

[1:31:48] intentional in setting

[1:31:49] like his IEP goals and

[1:31:51] things like that throughout his school

[1:31:52] career of

[1:31:54] being an advocate for

[1:31:55] himself, um, being able

[1:31:57] to, if mom and dad

[1:31:58] aren't there to, you

[1:32:00] know, repeat

[1:32:01] a question that you don't

[1:32:02] understand or not

[1:32:04] there to help you navigate

[1:32:05] an environment or,

[1:32:07] you know, it's OK to ask

[1:32:09] questions or to find someone

[1:32:10] to help you find the answers that

[1:32:12] you need. Um, and I

[1:32:13] think in Doing that

[1:32:14] intentionally.

[1:32:16] Um, and one of the things I want to be

[1:32:18] sure and mention is using the

[1:32:19] charting the life course

[1:32:20] tools. Um, those

[1:32:22] tools are so

[1:32:23] complementary

[1:32:24] in, um, self-directed

[1:32:26] and self, um, you

[1:32:27] know, just

[1:32:28] self-supported,

[1:32:29] um, self-

[1:32:30] determination.

[1:32:32] Things that go right

[1:32:34] along with

[1:32:35] supported decision making,

[1:32:37] but those that trajectory

[1:32:39] is a tool I always have in my

[1:32:40] mind for him for goals

[1:32:42] and one of our goals

[1:32:43] for him all through school was

[1:32:45] to be as independent as

[1:32:46] he could be. he

[1:32:48] wants to live by himself,

[1:32:49] so daily, you

[1:32:51] know, we're we teach those

[1:32:52] life skills. he

[1:32:54] receives developmental disability

[1:32:55] services and those goals

[1:32:57] are in. Um,

[1:32:58] his individual plan,

[1:32:59] you know, you want to live

[1:33:01] by yourself, but you got to do

[1:33:02] your laundry, you know,

[1:33:04] you want to live by yourself when you

[1:33:06] see the trash needs to be taken

[1:33:07] out, we shouldn't have to

[1:33:09] tell you to do that. You're a

[1:33:10] contributor in this house, not

[1:33:12] just a consumer, and

[1:33:13] so being sure to instill those

[1:33:15] kinds of things, um,

[1:33:16] and setting that foundation for

[1:33:18] that. but he's really

[1:33:20] good at, um, you

[1:33:21] know, just He'll

[1:33:23] he was the little kid in Target.

[1:33:24] If he wanted to know where something

[1:33:26] was, I could hear him

[1:33:27] three aisles away asking

[1:33:29] someone with the Target, you know,

[1:33:30] tag on their shirt,

[1:33:32] where do I find the Hot

[1:33:33] Wheels or, you know, whatever,

[1:33:35] um, going up and doing that.

[1:33:37] And along those lines, do you want

[1:33:38] to tell them about flying

[1:33:40] by yourself?

[1:33:41] Yeah, OK, I'll let you do

[1:33:43] that.

[1:33:47] >> Um, I

[1:33:48] just, um, I

[1:33:50] like to fly by

[1:33:51] myself to,

[1:33:52] um, to

[1:33:53] Iowa sometimes

[1:33:55] and,

[1:33:57] um, and I just

[1:33:58] got back from,

[1:34:00] um, Florida

[1:34:01] last

[1:34:02] February.

[1:34:05] Yeah, and stayed with

[1:34:06] um with

[1:34:07] my dad's

[1:34:09] dad and his girlfriend

[1:34:11] so for a few

[1:34:12] days

[1:34:13] to

[1:34:15] Yeah, and I had to change

[1:34:16] planes and I

[1:34:18] go, I had to go

[1:34:19] through like

[1:34:21] um Saint

[1:34:22] Louis on on

[1:34:24] the way back home.

[1:34:25] And I ask people,

[1:34:27] um, I need

[1:34:29] help to find to

[1:34:30] get the gate, and

[1:34:32] no one's never helped

[1:34:34] me.

[1:34:35] So I found it by

[1:34:37] myself.

[1:34:42] >> Uh, no, one of,

[1:34:44] one of his goals was to fly

[1:34:45] by himself and so,

[1:34:47] um, in

[1:34:47] 2018,

[1:34:50] um, several

[1:34:51] years ago, um, I guess

[1:34:52] almost now,

[1:34:54] almost seven years ago now,

[1:34:56] um, my husband

[1:34:58] is a first responder

[1:34:59] firefighter and he's a what

[1:35:00] if guy, so he's

[1:35:02] like, nope.

[1:35:03] Not gonna fly by himself, like

[1:35:05] what happens if he has a seizure?

[1:35:06] what happens if there's a

[1:35:08] crazy shooter,

[1:35:09] active shooter in the airport,

[1:35:11] like he's always going to the worst

[1:35:12] case scenario and

[1:35:13] so Um, I

[1:35:15] kind of talked him into

[1:35:17] it a little bit slowly,

[1:35:18] um, little bits at a time.

[1:35:20] Ellen, you probably know this

[1:35:21] story. but there's a

[1:35:22] tool in charting the life course tools

[1:35:24] called a star chart.

[1:35:25] And that star chart, you can put

[1:35:27] a goal, you can put a problem, you

[1:35:28] can put whatever in the middle of that chart,

[1:35:30] and you look at all of those

[1:35:31] natural supports that people

[1:35:33] have, um,

[1:35:34] access to, and you look at their

[1:35:36] strengths, and you look at their assets

[1:35:37] and their abilities.

[1:35:39] And, um of Leighton's

[1:35:40] strengths is he doesn't know a

[1:35:42] stranger. He's not afraid to ask

[1:35:43] questions. In

[1:35:45] looking at another part of the

[1:35:46] chart, it uses

[1:35:48] technology. Leighton is profoundly

[1:35:50] deaf. He uses

[1:35:51] cochlear implants to listen

[1:35:53] and talk and does very well with

[1:35:54] that. his deafness

[1:35:56] is caused by meningitis as

[1:35:57] a baby, so we didn't start

[1:35:58] out having a disability, but he

[1:36:00] acquired a disability later in

[1:36:01] life, in addition

[1:36:03] to seizures. And

[1:36:04] so,

[1:36:06] Um, you know, as long as his

[1:36:07] implants are charged, he's able to

[1:36:09] communicate and, you know,

[1:36:10] do, and the kid,

[1:36:12] like all of our kids, if you guys

[1:36:13] have kids, has cell

[1:36:15] phone.

[1:36:16] That is like a huge

[1:36:18] resource for them. So Leighton uses

[1:36:19] his cell phone in lots of different ways

[1:36:21] and and lots of

[1:36:22] communication. So

[1:36:24] just looking at all those

[1:36:25] pieces, I talked

[1:36:27] my husband into it and I was like,

[1:36:28] listen, we can prep

[1:36:29] him. He has his

[1:36:31] cell phone. he's not afraid

[1:36:32] to ask for help. And

[1:36:34] then the last thing that I proposed

[1:36:35] to him, which I think is what won him

[1:36:37] over is, you know,

[1:36:38] Southwest Airlines, as well as

[1:36:40] the others have, you know,

[1:36:41] accommodations for people with

[1:36:42] disabilities. So we

[1:36:44] can, you know, go through

[1:36:45] with them through security.

[1:36:47] We can sit with him, he can

[1:36:49] preboard the plane,

[1:36:50] um, they will have somebody at the

[1:36:52] gate, um, you know, to

[1:36:53] help him access, which

[1:36:55] they didn't this last

[1:36:56] time. they got

[1:36:57] a phone call from me,

[1:36:58] but to help him

[1:37:00] access and to find his

[1:37:01] connecting flight and make sure that

[1:37:03] he gets on that flight. And then on

[1:37:04] the other end his grandparents would

[1:37:06] be there to get him, you know, from the

[1:37:07] airport, and he's

[1:37:09] used to travelling. We love to

[1:37:10] travel and so, you know,

[1:37:11] any time we're at an airport we

[1:37:13] did auditory verbal therapy.

[1:37:15] Um, for him to listen and

[1:37:16] talk at Hearts for Hearing.

[1:37:18] And so I was

[1:37:19] constantly the, the,

[1:37:20] um, emce everywhere

[1:37:22] we went as a mom. I'm just

[1:37:23] like, explaining

[1:37:25] everything, you know, talking him through

[1:37:27] everything. So he's very comfortable in

[1:37:28] that environment and

[1:37:29] knows how to access that.

[1:37:31] But when it that was

[1:37:32] a goal he had, and I'm

[1:37:34] like, we need to make this happen.

[1:37:35] And Ellen recently did this with

[1:37:37] William too, did you not? last

[1:37:38] fall. So, Um,

[1:37:40] you know, we want to give our kids

[1:37:41] those opportunities and also

[1:37:43] opportunities to fail

[1:37:45] sometimes. We don't

[1:37:46] always make the best choices

[1:37:48] for ourselves, and we

[1:37:49] learn from those choices. And

[1:37:51] I think so many times with

[1:37:52] individuals with disabilities,

[1:37:54] we don't want them to

[1:37:55] fail, and we

[1:37:57] protect them so much that

[1:37:59] we, they don't sometimes

[1:38:00] learn those consequences

[1:38:02] from those choices that they've

[1:38:03] made. So,

[1:38:05] um, that informed

[1:38:06] decision making is really

[1:38:07] important.

[1:38:08] Um, Another

[1:38:10] goal Leighton has and I'll let him

[1:38:11] talk a little bit about, hey,

[1:38:13] William.

[1:38:15] I'll let him talk about

[1:38:17] is, um, he wants

[1:38:18] a girlfriend

[1:38:20] as bad as he wants a job,

[1:38:22] so >> more than he wants

[1:38:23] a job.

[1:38:25] >> well, probably maybe, maybe

[1:38:27] ultimately I don't know he likes

[1:38:28] he likes to work and have his money

[1:38:30] too.

[1:38:33] Um, but you know we

[1:38:35] we try to provide him

[1:38:36] opportunities, you know just

[1:38:38] for socialization and

[1:38:39] so um

[1:38:41] Leighton, do you want to tell them

[1:38:42] about um

[1:38:44] some of the things that you've done

[1:38:45] recently to try to find a

[1:38:47] girlfriend?

[1:38:50] You did the speed dating

[1:38:51] thing.

[1:38:53] >> Um,

[1:38:58] that >> embarrass you?

[1:38:59] Did I embarrass you? >> I can't

[1:39:00] remember. >> Do you want >> me to

[1:39:02] talk about it? Yeah, I can't

[1:39:03] remember. OK.

[1:39:05] >> Well, we, we try to

[1:39:07] encourage, but we don't force

[1:39:08] him to do these

[1:39:10] things. But you know,

[1:39:11] there's social

[1:39:12] things that he can be involved

[1:39:13] in. Um, he's

[1:39:15] done some things at Wings,

[1:39:17] um, decided

[1:39:19] that wasn't necessarily for

[1:39:20] him. He was socializing with

[1:39:21] the volunteers, the

[1:39:23] cute high school

[1:39:25] college girl volunteers more than

[1:39:26] he was socializing. So I'm

[1:39:27] like, If you don't want to

[1:39:29] do that, you don't have to do that.

[1:39:30] Um, he recently did a

[1:39:32] speed dating event at

[1:39:33] Social Capital, which was an

[1:39:35] inclusive speed

[1:39:36] dating event. He got

[1:39:38] a match and

[1:39:40] we showed him like,

[1:39:41] hey, you got this match, you

[1:39:43] know, do you want to follow up with her?

[1:39:44] I don't know yet. So

[1:39:46] he hasn't followed up with that.

[1:39:47] So um we're we're

[1:39:49] just going to keep trying to encourage

[1:39:51] that and let him take the

[1:39:52] lead on that and we'll

[1:39:54] be his Uber drivers for

[1:39:55] any of those kinds of things,

[1:39:56] but

[1:39:58] >> I have a question. um,

[1:39:59] Heather Leighton, thank you for

[1:40:01] being here.

[1:40:02] Heather, how would, and I know you're

[1:40:04] still thinking about the

[1:40:05] formal, but

[1:40:07] like no one here knows the

[1:40:08] charted lifespan. I

[1:40:09] just wanna say

[1:40:11] we all know that and they don't know the

[1:40:13] star chart, but you are

[1:40:14] the one that's putting that

[1:40:16] you're the one that's putting

[1:40:17] all those strengths

[1:40:19] in there for him.

[1:40:21] Leighton, since you

[1:40:22] have all

[1:40:23] that. You

[1:40:25] know, um, you've given your

[1:40:26] mom and she's raised you

[1:40:28] to be so independent,

[1:40:29] um, interdependence is,

[1:40:31] is what we call it,

[1:40:32] you know, maybe the star chart

[1:40:34] would look different, Heather,

[1:40:35] if Leighton was given

[1:40:37] more of that formal,

[1:40:39] um, and I know saying this

[1:40:40] that Rod's gonna be mad at me,

[1:40:42] his dad,

[1:40:43] um, but, um, it

[1:40:45] is that that

[1:40:46] sort of tug

[1:40:48] and pull that parents go through

[1:40:49] when your kids are getting

[1:40:51] older. Um,

[1:40:52] and if you would have put a guardianship at

[1:40:54] 18,

[1:40:55] Leighton may not

[1:40:57] have been given those opportunities

[1:40:58] to think more

[1:41:00] independently.

[1:41:03] thinking through the formal part

[1:41:04] of supported decision making,

[1:41:06] how would that help you

[1:41:07] and Leighton?

[1:41:10] >> So I think

[1:41:12] You know, when I, I think we've

[1:41:13] gotten better as a state

[1:41:15] and as a, as a

[1:41:16] society, but, um, you

[1:41:18] know, I remember when he turned

[1:41:19] 18, 1 of

[1:41:21] the first things people told

[1:41:22] us within the school system

[1:41:24] was, oh, you need to go get a

[1:41:25] guardianship.

[1:41:26] Um, and I'm like, I,

[1:41:28] he, he doesn't need

[1:41:30] a guardianship.

[1:41:31] and so we, that's why we opted

[1:41:33] for the power of attorney.

[1:41:35] but in thinking about

[1:41:36] supported decision making

[1:41:38] and just having that

[1:41:40] more formal and

[1:41:41] more recognized

[1:41:43] as

[1:41:44] something in addition

[1:41:46] to a power of attorney.

[1:41:47] Um, if something were to

[1:41:49] happen to my husband and I,

[1:41:51] Leighton has great

[1:41:52] supporters. Um, his sister

[1:41:54] being one of them, his brother-in-law

[1:41:55] being one of them,

[1:41:57] neighbours that have known him and

[1:41:58] grown up with him, my parents,

[1:42:00] my sister, my

[1:42:01] brother, you know, just extended

[1:42:03] family. But

[1:42:04] Normalizing that and making

[1:42:06] sure that everybody is on the

[1:42:07] same team, that's all

[1:42:09] knowledgeable

[1:42:10] about what

[1:42:11] what he needs for his

[1:42:13] supports when my husband and

[1:42:14] I maybe aren't going to be

[1:42:16] able to be there.

[1:42:17] My biggest

[1:42:18] fear for him is

[1:42:20] that I'm going to cry.

[1:42:21] Um, Is that

[1:42:23] someone, if something happened

[1:42:24] to us and someone

[1:42:26] were to come in and just

[1:42:27] automatically

[1:42:29] just put him in a group

[1:42:30] home or in a setting

[1:42:32] where he's just going to

[1:42:33] deteriorate

[1:42:35] and not have

[1:42:36] choices and not have

[1:42:38] options and not have those

[1:42:39] freedoms, um, and

[1:42:41] a voice in his care and

[1:42:42] where he lives and what he

[1:42:43] does, um,

[1:42:45] would be

[1:42:46] devastating.

[1:42:47] So I feel that a

[1:42:49] more formalized

[1:42:50] support Aci

[1:42:51] making option.

[1:42:53] Again, I go back to that

[1:42:54] safety net. It's just

[1:42:56] another safety net

[1:42:57] for families that

[1:42:59] is a great

[1:43:00] alternative to that

[1:43:01] full-fledged guardianship.

[1:43:03] Um, but also, I,

[1:43:05] in my mind, it kind of

[1:43:06] accentuates and it's just

[1:43:08] another piece,

[1:43:10] um, for POA.

[1:43:11] Um, and I, I'm not

[1:43:13] legal. I don't know how all

[1:43:14] that works together. But in

[1:43:16] my mind, that's how I see it as a

[1:43:17] mom.

[1:43:19] >> So even formalizing it maybe

[1:43:21] the conversation would

[1:43:22] sooner would be instead of just talking

[1:43:24] about guardianship

[1:43:25] but talking about supported decision

[1:43:27] making with families

[1:43:29] earlier

[1:43:30] and giving that

[1:43:32] understanding about the decision making a person

[1:43:33] with a disability can

[1:43:35] have would

[1:43:36] um and that

[1:43:38] maybe formalizing it

[1:43:39] I'm assuming also

[1:43:41] would mean that other people would

[1:43:42] understand what that was if they don't have a child

[1:43:44] with a disability and

[1:43:45] about how those decisions are

[1:43:47] supported even if

[1:43:48] they have a disability.

[1:43:51] >> I agree with

[1:43:52] that.

[1:43:54] I, I'm not one

[1:43:55] to, I, I don't like

[1:43:56] paperwork.

[1:43:58] I don't like, you know,

[1:43:59] um, big government

[1:44:01] and, you know, all those things,

[1:44:03] but um,

[1:44:04] I just feel like

[1:44:06] this could be done in a way

[1:44:07] that would be

[1:44:09] again, kind of that safety

[1:44:10] net, um

[1:44:12] and an

[1:44:13] option

[1:44:14] for families and individuals

[1:44:16] to be able to utilize.

[1:44:18] >> Thank you, Leighton.

[1:44:20] I'm How would

[1:44:21] you feel? Like, do you like,

[1:44:23] do you like it when

[1:44:24] People listen to you and support

[1:44:26] your decisions.

[1:44:28] So how did that make you

[1:44:29] feel when after talking

[1:44:31] about wanting to fly

[1:44:32] alone for a very long time

[1:44:34] that your mom and dad both

[1:44:35] supported your decision in doing

[1:44:37] that?

[1:44:38] Uh, >> how did that make

[1:44:40] you feel to be able to fly by

[1:44:41] yourself? >> I

[1:44:43] just like wine

[1:44:44] by

[1:44:45] myself.

[1:44:47] >> You've taken several trips now,

[1:44:49] haven't you?

[1:44:50] Yeah.

[1:44:52] Is there anything else that you guys

[1:44:54] would like to say before I move on to

[1:44:55] those that Oklahoma

[1:44:57] State University students?

[1:44:59] >> Um,

[1:45:01] Oh. >> No, you

[1:45:02] still want to live by yourself someday?

[1:45:04] Yeah, you're still working toward

[1:45:05] that. >> Mhm, yeah,

[1:45:07] yeah, my friend

[1:45:08] keeps telling texting

[1:45:10] me, so

[1:45:12] thanks for that. >> You

[1:45:13] have a friend that, yeah, that wants

[1:45:15] to do that too, don't you?

[1:45:17] >> Yeah.

[1:45:19] Anyone have any other

[1:45:20] questions? OK.

[1:45:22] thank you so much for

[1:45:23] being here. I appreciate

[1:45:24] it.

[1:45:28] Uh, next, um,

[1:45:30] there's, uh, I'd like

[1:45:31] to, uh,

[1:45:32] I asked, uh, Doctor

[1:45:34] Emily Tucker from

[1:45:35] Opportunity Orange Scholars to come. She

[1:45:37] was unable to be here today, but

[1:45:38] she asked me to read

[1:45:40] something, um,

[1:45:41] about Opportunity Orange Scholars,

[1:45:43] and they do a

[1:45:44] circle, um,

[1:45:46] of support and so that's,

[1:45:47] uh, she asked

[1:45:49] me to read this. So, uh,

[1:45:50] before we get to our next.

[1:45:52] Uh participants

[1:45:54] here, um,

[1:45:55] opportunity and scholars is a two year

[1:45:57] academic certificate program at

[1:45:58] Oklahoma State University

[1:46:00] for students with intellectual

[1:46:01] disabilities. Students

[1:46:03] have a range of guardianship

[1:46:04] arrangements from no

[1:46:05] guardianship to

[1:46:06] partial or full

[1:46:08] guardianship. Like

[1:46:09] all young adults, OOS

[1:46:11] students make decisions every day

[1:46:12] about school, work,

[1:46:13] relationships, where they

[1:46:15] wanna live and what they want their

[1:46:16] future to look like. They

[1:46:18] may need advice from family,

[1:46:19] friends, professors and

[1:46:21] mentors just as any

[1:46:22] of us did at that age.

[1:46:24] Needing support does not mean

[1:46:25] someone is unable to make

[1:46:27] decisions. Supported

[1:46:28] decision making allows people with

[1:46:30] intellectual disabilities to remain

[1:46:31] at the center of decisions

[1:46:33] about their own lives while

[1:46:35] receiving the guidance and support

[1:46:36] they need. OOS

[1:46:38] puts this into practice through its circle

[1:46:39] of support meetings. Each

[1:46:41] student chooses who

[1:46:42] participates, identifies

[1:46:44] what they want to discuss, and leads

[1:46:45] the meeting. Family,

[1:46:47] faculty, mentors, and other provide

[1:46:48] guidance, but the student

[1:46:50] remains at the center of the

[1:46:51] conversation. That is the heart of

[1:46:53] supported decision making. It does

[1:46:54] not mean making difficult

[1:46:56] decisions alone. It

[1:46:57] means having support without

[1:46:59] automatically giving up the right

[1:47:00] to make choices,

[1:47:02] learn from mistakes, grow and

[1:47:03] build a life based on your own

[1:47:05] goals and preferences.

[1:47:07] So thank you so much, opportunity orange

[1:47:08] scholars students.

[1:47:10] If you could, could

[1:47:11] you give us your

[1:47:12] name and

[1:47:14] uh.

[1:47:15] And um then

[1:47:17] tell us how long you've been at Oklahoma

[1:47:19] State University.

[1:47:21] >> OK,

[1:47:22] um

[1:47:23] Yes I'll go first.

[1:47:25] OK, I'm, I'm

[1:47:27] Jeffrey. I'm Jeffrey

[1:47:28] Harter and

[1:47:30] I've been here for now a year

[1:47:32] and this is my last

[1:47:32] year.

[1:47:38] >> OK.

[1:47:40] >> I

[1:47:45] I, I

[1:47:46] am

[1:47:46] William

[1:47:49] uh

[1:47:49] Hefner.

[1:47:52] I,

[1:47:53] uh

[1:47:57] Um,

[1:47:59] I

[1:48:01] I can

[1:48:02] hear.

[1:48:08] >> Thank you so much for being

[1:48:09] here. I have a few

[1:48:11] questions to ask. Um,

[1:48:12] number one, do you like being at

[1:48:14] Oklahoma State

[1:48:15] University?

[1:48:16] >> Yes, yeah,

[1:48:17] yeah. >> How

[1:48:19] was that game last Saturday

[1:48:20] night?

[1:48:21] >> It

[1:48:23] was

[1:48:28] one of

[1:48:29] the

[1:48:31] best it

[1:48:32] was

[1:48:37] >> Oh >> good. >> I'm glad you

[1:48:38] guys enjoyed yourselves.

[1:48:40] Um. So

[1:48:41] tell me, um,

[1:48:43] can you

[1:48:45] explain what circle of

[1:48:46] support means to

[1:48:47] you?

[1:48:49] >> Um, I

[1:48:51] think circle support

[1:48:52] means this, I

[1:48:54] think.

[1:48:56] How would you describe it, William kind

[1:48:57] of just like just having

[1:48:59] some you know a lot of people

[1:49:00] there to help you,

[1:49:02] yeah, so

[1:49:03] yeah, there's a lot of people there to help

[1:49:05] you like your like for

[1:49:06] example, your

[1:49:07] parents,

[1:49:09] friends, guardians,

[1:49:10] who you wanna call

[1:49:11] them and

[1:49:13] they're just there to help you in

[1:49:14] whatever you

[1:49:15] need.

[1:49:18] >> So, so do

[1:49:20] you decide who attends the

[1:49:21] meetings or does someone else pick

[1:49:23] those? >> Yes, we

[1:49:24] decide, um, well,

[1:49:26] me or William decide who

[1:49:28] gets to come to our

[1:49:29] meetings.

[1:49:32] >> So,

[1:49:33] um,

[1:49:35] do either of you have a

[1:49:36] guardian?

[1:49:37] >> Uh, no,

[1:49:39] >> no. We,

[1:49:40] I'm, I, I

[1:49:42] have the power of

[1:49:43] attorney

[1:49:44] thing.

[1:49:51] >> Who

[1:49:53] >> Have you, have you talked to your

[1:49:54] parents about guardianship,

[1:49:56] Jeffrey, have you talked to your

[1:49:57] parents?

[1:49:58] >> Um,

[1:49:59] yes, um, a

[1:50:01] little bit. I don't talk too

[1:50:02] much about it very much

[1:50:04] because we don't really like

[1:50:05] talking about it because it can

[1:50:07] just creates an argument in the

[1:50:08] family a little

[1:50:09] bit.

[1:50:11] >> How about you, William? have you talked

[1:50:13] to your parent

[1:50:14] about guardianship?

[1:50:16] Uh-huh.

[1:50:19] How does, how do those

[1:50:21] conversations go?

[1:50:23] >> Uh,

[1:50:24] not

[1:50:27] because

[1:50:29] cause

[1:50:32] And

[1:50:35] No

[1:50:39] all of

[1:50:41] Play

[1:50:42] lot

[1:50:47] >> I'm really afraid to ask what that

[1:50:48] three-letter word

[1:50:49] is.

[1:50:52] What's the three-letter word?

[1:50:54] >> Uh

[1:51:05] >> Oh OK so

[1:51:06] when we talk about guardianship

[1:51:08] you mean when you and

[1:51:09] I talk about guardianship

[1:51:11] they're uncomfortable. I,

[1:51:13] I think it's uncomfortable

[1:51:15] for me with

[1:51:16] you because um

[1:51:18] sometimes we agree

[1:51:20] and sometimes we disagree would

[1:51:21] you agree with that?

[1:51:22] Uh-huh.

[1:51:24] OK and

[1:51:25] for you Jeffrey

[1:51:27] it's is

[1:51:28] your your

[1:51:29] parents are wanting to talk

[1:51:31] about guardianship and are

[1:51:32] you wanting guardianship

[1:51:33] or. >> Uh,

[1:51:35] no, no,

[1:51:36] >> and, and why wouldn't, why

[1:51:38] wouldn't you want guardianship,

[1:51:40] >> um, because I feel like I

[1:51:41] can do stuff for

[1:51:43] myself and I feel

[1:51:44] like

[1:51:45] I can make my own

[1:51:47] choices for

[1:51:48] myself.

[1:51:49] And

[1:51:51] and I just, I

[1:51:52] feel like I can just take care of

[1:51:54] myself.

[1:51:55] better than someone who can take care of

[1:51:57] me.

[1:51:59] >> William, how about you? Do

[1:52:01] you want, do you think

[1:52:02] a guardianship would be appropriate

[1:52:04] for you

[1:52:05] and

[1:52:08] >> Um

[1:52:09] now >> Why

[1:52:11] is that? Why don't you think a guardianship

[1:52:13] is appropriate for

[1:52:13] you?

[1:52:19] >> I don't

[1:52:20] think it

[1:52:21] is appropriate

[1:52:23] for

[1:52:23] me.

[1:52:27] I

[1:52:28] wouldn't

[1:52:31] I

[1:52:33] Like be able

[1:52:35] to

[1:52:37] Travel

[1:52:39] He would

[1:52:41] always have to take

[1:52:42] someone

[1:52:43] with

[1:52:45] You

[1:52:47] you

[1:52:48] wouldn't

[1:52:50] Like make your

[1:52:52] own

[1:52:53] decisions,

[1:52:55] they would have

[1:52:55] to make

[1:52:57] the decisions.

[1:52:59] Oh

[1:53:00] you

[1:53:02] and

[1:53:04] that

[1:53:05] is

[1:53:10] >> Also why I do not

[1:53:11] want

[1:53:13] A

[1:53:14] audience

[1:53:15] because

[1:53:18] Uh

[1:53:21] I

[1:53:25] like

[1:53:28] Uh,

[1:53:30] Being my

[1:53:32] own

[1:53:35] guardian d

[1:53:38] I can

[1:53:39] make

[1:53:43] >> it's

[1:53:47] And

[1:53:49] >> OK, well, thank you. I, I'm

[1:53:51] sorry to cut you off, but I wanted

[1:53:53] to ask, like,

[1:53:54] are there some

[1:53:55] decisions

[1:53:56] that you would like

[1:53:58] help with?

[1:54:00] >> Oh yeah, yeah, >> yeah,

[1:54:02] yeah, >> yeah,

[1:54:03] >> yeah.

[1:54:06] >> How about you, Jeffrey? Is there

[1:54:07] some decisions you would like to have help

[1:54:09] with?

[1:54:10] >> Some, but not

[1:54:11] many.

[1:54:13] But nothing that requires a guardian,

[1:54:14] I don't

[1:54:15] think.

[1:54:17] >> I, I'll tell you, you know, I,

[1:54:19] I like getting, I like

[1:54:20] asking for help, um,

[1:54:22] and so that's sometimes what

[1:54:23] that, that, that

[1:54:25] looks like to that

[1:54:26] informal way of getting

[1:54:28] help, um, is

[1:54:29] and support from other people,

[1:54:31] um, what, what would

[1:54:33] be something that you

[1:54:34] would think you

[1:54:36] both mentioned that you have a power

[1:54:37] of attorney is there

[1:54:39] something that especially in

[1:54:40] circle of support that you

[1:54:42] counted on the

[1:54:43] support of the people to be in that

[1:54:45] room to help you?

[1:54:46] Is there something specific?

[1:54:48] >> Mm,

[1:54:49] just not

[1:54:51] really. How about you,

[1:54:52] William? I can't think

[1:54:54] of anything that

[1:54:55] would That,

[1:54:56] that, that helped me

[1:54:58] that I really needed specifically

[1:54:59] needed help with.

[1:55:01] >> Uh

[1:55:05] That's not for

[1:55:07] me.

[1:55:08] >> No. >> But

[1:55:09] having those, well, but

[1:55:11] having those people in that circle

[1:55:12] of support, do you count

[1:55:14] on them?

[1:55:16] >> I mean we ask

[1:55:18] questions to him and maybe ask him

[1:55:19] for an opinion, but other than

[1:55:21] that,

[1:55:22] we can't just make our own

[1:55:24] decisions.

[1:55:27] >> I, I like that. So you're

[1:55:29] asking for their

[1:55:30] opinions and sometimes

[1:55:32] you go with their opinions

[1:55:33] and sometimes maybe you

[1:55:35] don't, correct?

[1:55:36] Correct.

[1:55:39] So let's see William

[1:55:41] um if you

[1:55:43] um had a circle

[1:55:44] of support away

[1:55:46] from college and they called

[1:55:47] it supported decision

[1:55:48] making do you

[1:55:50] have an idea of some

[1:55:51] people that you would

[1:55:53] maybe put in that

[1:55:55] circle of support outside of

[1:55:56] college that could help

[1:55:58] you if you lived by

[1:55:59] yourself?

[1:56:01] >> Oh yeah yeah

[1:56:03] yeah yeah yeah yeah yeah

[1:56:04] yeah.

[1:56:08] Uh,

[1:56:11] I would

[1:56:12] have

[1:56:14] Uh

[1:56:18] I would

[1:56:19] have

[1:56:21] Uh

[1:56:26] Uh,

[1:56:38] um

[1:56:42] Uh

[1:56:43] my

[1:56:48] And the

[1:56:48] in

[1:56:52] I am.

[1:56:53] Mhm.

[1:56:55] >> How about you Jeffrey? Do you think

[1:56:57] outside, you know, moving away

[1:56:58] from Oklahoma State University,

[1:57:00] you're a second year student

[1:57:02] and the circle of support

[1:57:03] stays with Oklahoma

[1:57:05] State University,

[1:57:06] do you think that there's, if

[1:57:08] you live independently

[1:57:09] by your by yourself

[1:57:10] that you

[1:57:12] would have a group of

[1:57:13] people that you could count on to

[1:57:14] ask.

[1:57:18] for some support.

[1:57:20] >> Yeah, there's some

[1:57:21] people,

[1:57:22] um,

[1:57:24] That would could help me

[1:57:26] with my stuff,

[1:57:27] but only people I

[1:57:28] have right now is my parents

[1:57:30] and my grandparents.

[1:57:32] And maybe a few of my friends,

[1:57:33] but that ain't

[1:57:34] many.

[1:57:36] >> Those people could be on

[1:57:37] your your circle

[1:57:39] of support outside of

[1:57:41] OSU

[1:57:42] but not make the decisions

[1:57:44] for you you would

[1:57:45] accept help

[1:57:47] and.

[1:57:49] Thank you.

[1:57:50] Is there anything that you would like

[1:57:52] to say either of you

[1:57:53] on um

[1:57:55] being at Oklahoma State

[1:57:56] University and um

[1:57:58] having

[1:57:59] the your

[1:58:01] own decision making

[1:58:02] abilities as you're at

[1:58:03] college?

[1:58:06] >> You

[1:58:07] first.

[1:58:10] All

[1:58:10] righty.

[1:58:14] Well,

[1:58:15] I just

[1:58:17] I just,

[1:58:18] I, I'm just like

[1:58:20] being

[1:58:21] Independent for myself

[1:58:23] and I just don't

[1:58:25] think there's no need for a

[1:58:26] guardian when

[1:58:27] you can just make decisions for

[1:58:29] yourself and

[1:58:31] not just a matter of not just

[1:58:32] a matter of opinion,

[1:58:33] but That's

[1:58:35] just me

[1:58:36] You,

[1:58:38] >> Uh,

[1:58:46] Uh

[1:58:50] Um, what was the

[1:58:51] question?

[1:58:54] >> How do you like being a

[1:58:55] a student at Oklahoma State

[1:58:57] University and having the ability to make

[1:58:59] your own decisions?

[1:59:00] >> Oh.

[1:59:02] I answered that question

[1:59:03] wrong.

[1:59:09] >> Probably

[1:59:10] uh

[1:59:11] this

[1:59:13] >> Like just how like how you like

[1:59:14] it.

[1:59:16] >> Oh, I love

[1:59:17] it.

[1:59:20] >> Yeah, we both love it

[1:59:21] here and just having our own

[1:59:23] decisions.

[1:59:25] >> Well, I hope you both made great

[1:59:27] decisions Saturday night

[1:59:28] after the game

[1:59:30] storming the field.

[1:59:32] Yeah

[1:59:34] right, OK, I

[1:59:36] see it,

[1:59:37] um, any

[1:59:38] other, anything else you'd like

[1:59:40] to say or any questions that you

[1:59:41] have for us?

[1:59:43] >> Um,

[1:59:44] I can't, I can't think of

[1:59:46] any, do you?

[1:59:47] >> Uh

[1:59:50] Well, all >> right,

[1:59:52] I guess we don't have any questions.

[1:59:54] >> All right, thank you guys for being

[1:59:55] here. Is there anyone that has

[1:59:56] any questions here?

[1:59:58] That are

[1:59:59] present

[2:00:03] All right well thank you guys.

[2:00:05] I appreciate you uh

[2:00:06] coming on thank you

[2:00:07] William for making this very painless

[2:00:09] for me um

[2:00:11] no

[2:00:12] and uh I appreciate you

[2:00:14] being here. >> All

[2:00:15] right, thank

[2:00:16] you. Thank

[2:00:17] you.

[2:00:20] >> Well, it looks like we

[2:00:22] may um be able to end

[2:00:23] early um

[2:00:25] if uh if there are

[2:00:27] no other

[2:00:27] questions.

[2:00:29] Any questions?

[2:00:31] OK. Well,

[2:00:33] I, I would love to,

[2:00:34] uh thank you,

[2:00:36] uh, Chairman Dell

[2:00:38] and, uh, Vice Chairman

[2:00:39] Culver for,

[2:00:40] um, for

[2:00:42] allowing this. I know that there

[2:00:43] is a lot said.

[2:00:45] Um, about supported decision

[2:00:46] making and a lot of

[2:00:47] questions still so grateful

[2:00:49] to, um

[2:00:51] to have you here, uh,

[2:00:53] Morgan and I

[2:00:54] hope to contact you

[2:00:55] again, uh, maybe

[2:00:57] for some more technical assistance

[2:00:58] there. I like the idea

[2:01:00] of taking a while

[2:01:01] to to get a bill

[2:01:02] drafted. Because

[2:01:04] then it it has us put all

[2:01:05] these different things maybe

[2:01:07] there's something that we need

[2:01:08] to change and I

[2:01:10] appreciate your, uh,

[2:01:12] commentary on that. Um,

[2:01:13] thank you so much and

[2:01:15] giving us the examples

[2:01:16] of other states as well.

[2:01:18] Um, thank you to,

[2:01:19] uh, uh, Brian for being

[2:01:21] here. I appreciate that.

[2:01:23] Heather, thank you for

[2:01:24] coming. uh thank you Leighton

[2:01:26] for being here and then of

[2:01:27] course the students from Oklahoma

[2:01:28] State University it looks like they're

[2:01:30] gone. Um,

[2:01:31] but I appreciate them being here

[2:01:33] as well. Um,

[2:01:34] supported decision making. thank

[2:01:36] uh thank you again to

[2:01:37] the staff, uh thank you

[2:01:39] for being here, Representative,

[2:01:40] uh, uh, Stinson,

[2:01:42] um.

[2:01:44] This, this is kind of

[2:01:45] difficult, you know, there's some of

[2:01:47] us that feel

[2:01:49] That yeah guardianship

[2:01:50] is way too restrictive

[2:01:52] and even the least restrictive

[2:01:53] guardianship is

[2:01:55] way too restrictive

[2:01:57] for some of our kids

[2:01:58] um I think that leaving

[2:02:00] it without any sort

[2:02:01] of rules on it if I

[2:02:03] can say that leave it

[2:02:04] open to our vulnerable.

[2:02:07] Young adults

[2:02:08] to maybe have someone

[2:02:09] putting themselves on a team

[2:02:11] that's not really formalized

[2:02:13] by the person with a

[2:02:14] disability um

[2:02:15] that could be I

[2:02:17] mean that was a question I had in

[2:02:18] my head this is also

[2:02:20] something if we're not too restrictive

[2:02:21] we could look at aging

[2:02:23] adults and I think there's

[2:02:24] some of us that have

[2:02:25] had an experience with

[2:02:27] or will have an

[2:02:28] experience with an aging

[2:02:30] adult where.

[2:02:32] They may need the support

[2:02:33] of someone else on their team

[2:02:35] in that they

[2:02:37] can go to

[2:02:38] for help. I'm

[2:02:39] thinking of a neighbour of

[2:02:41] mine who um

[2:02:42] with a roofer because I was you

[2:02:44] brought up that example Brian and it

[2:02:46] reminded me of that that

[2:02:47] she felt she had to do

[2:02:48] something and if there

[2:02:50] was and

[2:02:51] and felt she got into

[2:02:53] something that she shouldn't have because she

[2:02:54] didn't understand and

[2:02:56] so if we

[2:02:57] formalize something maybe

[2:02:58] other people

[2:03:00] besides

[2:03:01] um. It'll make

[2:03:02] it more

[2:03:04] I don't know what is that

[2:03:05] social to talk

[2:03:07] about it and I think that's

[2:03:08] probably what's needed in this

[2:03:10] conversation helps that

[2:03:12] that um it's not just

[2:03:13] for disability we we don't want to

[2:03:15] be that narrow especially

[2:03:16] what defines that

[2:03:18] but I need help

[2:03:19] all the time and

[2:03:20] formalizing that I may need in

[2:03:22] the near future so

[2:03:23] knowing that it's offered to us

[2:03:25] elderly people as

[2:03:26] well and

[2:03:28] historically guardianship has been

[2:03:29] applied too broadly.

[2:03:31] And from my own experience

[2:03:32] knowing how and

[2:03:34] Heather expressed that as

[2:03:35] well about having that

[2:03:37] be the only

[2:03:38] option and then we put ourselves

[2:03:40] in there what are we not doing to

[2:03:41] protect our kids

[2:03:43] um and then of

[2:03:44] course you met William

[2:03:46] he's got ideas of his own

[2:03:48] and um.

[2:03:49] It's, it's

[2:03:51] kind of kind of those hard

[2:03:52] conversations that we've had about that as

[2:03:54] well so

[2:03:55] having this option could

[2:03:57] help. I understand the liability,

[2:03:58] but thank you for

[2:04:00] explaining that a little bit more.

[2:04:02] Um, I know that a

[2:04:03] notary is not

[2:04:05] required for a power of attorney. You would think

[2:04:06] it would be, but

[2:04:08] it's not. is that

[2:04:09] correct,

[2:04:09] Brian?

[2:04:13] Yes, yeah,

[2:04:14] so there again, you

[2:04:16] know, there's those

[2:04:17] I, I remember someone saying you

[2:04:19] should get a notary for this

[2:04:20] and I mean all these things

[2:04:22] that I don't, I don't want

[2:04:23] unintended consequences,

[2:04:25] but I think these questions and all these

[2:04:26] things that come up are really

[2:04:28] great for us to be thinking

[2:04:29] of and then I want everyone

[2:04:30] to know that this isn't easy for

[2:04:32] me, um, or

[2:04:34] Heather for that matter. I mean

[2:04:35] we, we've talked about

[2:04:36] this for a long time,

[2:04:38] uh, ever since our kids

[2:04:39] were young,

[2:04:40] um.

[2:04:42] The difference is really significant

[2:04:43] about taking someone's rights

[2:04:44] away, and that I think

[2:04:46] was just mentioned to touch,

[2:04:48] but for for my son,

[2:04:49] I know that he knows he has

[2:04:51] these rights.

[2:04:52] What, what, what are we doing if

[2:04:54] we take away that too

[2:04:55] soon?

[2:04:57] If we start that in too soon

[2:04:58] and where they could go

[2:05:00] if they know that they have that

[2:05:02] opportunity and the rights

[2:05:03] to make a choice,

[2:05:05] um, again I wanna thank the

[2:05:06] house staff,

[2:05:07] um, I'd love and

[2:05:09] especially my legislative

[2:05:11] assistant Chelsea all who have

[2:05:12] helped with this, the

[2:05:14] students at OOS

[2:05:15] OSU, Doctor

[2:05:16] Tucker, thank you

[2:05:18] for having them here,

[2:05:20] um, and of course I'd like to

[2:05:21] thank William. Um,

[2:05:23] thank, thank him for not saying

[2:05:24] anything that would embarrass

[2:05:26] me. It, it almost

[2:05:27] was, I'll tell you that,

[2:05:29] um, but even

[2:05:30] then, you know, he's the only one that

[2:05:32] helps me understand the barriers

[2:05:34] and all the gaps,

[2:05:35] and, um, and I

[2:05:37] know I'm not just doing this

[2:05:38] for myself.

[2:05:40] I know I'm not,

[2:05:41] um, so I'm having

[2:05:43] him and then especially

[2:05:44] the students and then

[2:05:45] Leighton to help

[2:05:47] all of us understand that

[2:05:49] you know these are difficult

[2:05:50] conversations and uh

[2:05:52] and um.

[2:05:53] And there's more out there that we can

[2:05:55] do. Um,

[2:05:57] thanks again for listening and,

[2:05:58] uh, again, I

[2:06:00] appreciate your time and

[2:06:01] attention.

[2:06:04] >> Well, thank you, representative

[2:06:06] and all the presenters

[2:06:08] and everybody here

[2:06:09] today, uh.

[2:06:11] Something that we need to take a

[2:06:12] deep dive in

[2:06:13] and I can't

[2:06:15] think of a better one to do it

[2:06:16] than you, Representative.

[2:06:18] So with that, we're adjourned.

Civil Judiciary

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