[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.