Legislature(2017 - 2018)GRUENBERG 120
04/09/2018 01:00 PM House JUDICIARY
Note: the audio ![]()
and video ![]()
recordings are distinct records and are obtained from different sources. As such there may be key differences between the two. The audio recordings are captured by our records offices as the official record of the meeting and will have more accurate timestamps. Use the icons to switch between them.
| Audio | Topic |
|---|---|
| Start | |
| SB202 | |
| HB336 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | SB 202 | TELECONFERENCED | |
| + | HB 336 | TELECONFERENCED | |
| + | TELECONFERENCED |
HB 336-SUPPORTIVE DECISION-MAKING AGREEMENTS
2:51:52 PM
HANS RODVICK, Staff, Representative Charisse Millett, Alaska
State Legislature, advised that HB 336 is known as the
"Supported Decision-Making Agreements Act," (Indisc.). This
legislation basically creates a new legal framework to help
Alaskans with intellectual and developmental disabilities to
live fuller, happier, more individualized, and automatous lives.
He offered that this bill promotes a philosophy grounded in the
principles of equal rights and a belief that all individuals do
possess inherent capacities to make decisions and share opinions
regarding their lives. Working in conjunction with the
Governor's Council on Disabilities and Special Education, this
legislation is brought forward to create a new avenue to help
adults with intellectual and developmental disabilities (IDD)
receive necessary support and help those Alaskans avoid being
placed under full guardianship. Guardianship in Alaska is over-
utilized, he described, because currently there are over 100
wards per public guardian while the national recommendation
caseload is one public guardian for 40 wards. Full guardianship
is selected when there are no other less restrictive options for
individuals who need that support, and in Alaska, there are not
many other options outside of full guardianship. Individuals
with intellectual and developmental disabilities (IDD) many
times are placed under full guardianship even though they may
have the capacity to makes their own decisions. These high
caseload numbers can lead to the potential failure to meet on a
monthly basis as required by state law, and loss of independence
and self-expression and less employment opportunities for those
individuals with disabilities, he said.
2:54:10 PM
MR. RODVICK explained that HB 336 will assist the elderly in
Alaska with IDD issues and retain their inherent right to make
decisions for themselves. Likewise, he related, it will ensure
that the Office of Public Advocacy (OPA) is truly spending its
time helping and assisting those who require full guardianship.
The sponsor believes, he offered, that it is necessary to give
the Alaskans stuck in full guardianship the opportunity for
self-direction and restoring their inherent right to self-
decision making.
2:54:40 PM
REPRESENTATIVE KREISS-TOMKINS moved to adopt CS for HB 336,
labeled 30-LS1239\U, Bannister, 3/29/18 as the working document.
There being no objection, Version U was before the committee.
CHAIR CLAMAN opened invited testimony on CSHB 336.
2:56:24 PM
PROFESSOR HELEN GAEBLER, Senior Research Attorney, University of
Texas School of Law, advised that she is the Senior Research
Attorney for the William Wayne Justice Center for Public
Interest Law at the University of Texas School of Law. She
offered her appreciation for the opportunity to share some of
what they have learned in Texas about supported decision-making
following enactment of its own Supported Decision-Making (SDM)
legislation which went into effect on September 1, 2015. As
previously noted, supported decision-making (SDM) is an
important tool for persons who need some support but not
necessarily a guardianship. In Texas and elsewhere, limited
guardianship is seldom used as a lesser restrictive alternative,
and the SDM law in Texas has allowed for less restrictions on
the self-determination of persons with disabilities, and
provides an alternative that keeps families without resources
out of court. Her experience with SDM, she explained, stems
from work with her colleague, Lucy Wood who is a former
disability rights Texas attorney, and their law school's pro
bono program. Professor Gaebler then discussed the work they
have been able to accomplish that includes: SDM pro bono clinics
in and around Austin, including clinic each year at the Texas
School for the Blind and Visually Impaired, and in the Rio
Grande Valley; partnered with approximately 20 school districts;
counseled more than 360 clients and their families; facilitated
at least 78 Supported Decision-Making (SDM) agreements; provided
information about SDM and the Texas legal requirements around
guardianship alternatives for many more individuals and
families.
2:58:32 PM
PROFESSOR HELEN GAEBLER advised that for purposes of this
hearing, she attempted to gather additional information from
other legal providers and advocates. Specifically, she said,
she reached out to Disability Rights of Texas, Texas Rio Grande
Legal Aid, and the guardianship reform supported decision-making
stakeholder groups which first spearheaded the SDM movement in
Texas. As of this afternoon, she advised that she received the
following information: Disability Rights of Texas reports having
served an additional 158 clients and almost all having signed
SDM agreements as a result of meeting with the "RTX." The RTX
also performs much of the state's training pursuant to a Texas
Council on Developmental Disabilities Training Grant, and within
the first two years of that grant, the RTX reports having
trained almost 6,000 individuals on Supported Decision-Making
(SDM) and the Texas legal requirements. The training was for
self-advocates and families, legal professionals, schools,
parents, service providers, and other professionals. For its
part, she explained, Texas Rio Grande Legal Aid estimates it has
assisted approximately 100 individuals with SDM agreements and
most of these clients were transitioning use and it involved
families who were combining SDM agreements with other forms of
legal support, such as limited powers of attorney. Its lead
trial attorney advised that she has seen more and more
applicants specifically seeking SDMs and the power of attorneys
as opposed to guardianship, noting that the SDM reforms appear
to have done a lot to educate the larger population about
guardianship alternatives more generally.
3:00:17 PM
PROFESSOR HELEN GAEBLER said she would point out three trends
that have been quite consistent across all of these cases.
First, overwhelmingly the population Texas is serving is one of
transitioning use who are in or have recently graduated from a
transitional learning program. Second, the majority of clients
served, certainly through the law school, are individuals who
are on the autism spectrum, although many also may have a co-
occurring secondary diagnosis. Third, almost all of the law
school's clients have chosen their parents or other family
members to serve as their supporters, and she said that she
believes this is also the case for the RTX and (indisc.)
clients. Importantly, she commented, the feedback on these
agreements has been universally positive, the law school has not
received any complaints regarding use or misuse of the SDM
agreements, and a professor at Rio Grande Legal knows of only
two incidents from all of its client contacts and other outreach
where an agreement was not accepted by a third party. In at
least one of those cases and possibly both, the refusal to
accept was due to a lack of awareness about the SDM law in Texas
and not due to any substantive concern. In the case of
(indisc.) clients, the lead probate attorney reported that most
of the third parties she has been involved with have been happy
to have something "official" to rely upon in dealing with their
individual disability and their family. As to the challenges in
implementation, she offered, the one recurring comment has been
the challenge of educating the public about the statute and the
alternatives to guardianship more generally. Even with the
RTX's extensive training and programs like the law school's
clinics, it is slow work (coughing) all of Texas. (Audio
difficulties.) The comment she received from (indisc.) today
was that when families hear about SDM agreements, they "sigh
with relief" and are happy with the idea of not taking their
child's rights away. The consensus is that this helps families
in a meaningful manner, and she offered that this comment
certainly comports with the experience they have had at the law
school with clients. It is exciting that Alaska is
contemplating a SDM statute and, she reiterated that the
experiences in Texas have been positive and it continues to push
for implementation.
3:02:59 PM
MR. RODVICK paraphrased the sectional analysis as follows
[original punctuation provided]:
Section One: Amending AS 13, which related to
decedents' estates, guardianships, transfers, trusts
and health care decisions, by adding a new chapter
chapter 56
13.56.010: Authorizes adults to enter into a
supported decision-making agreement(SDMA) and spells
out reasons why an adult may not enter a SDMA.
13.56.020: Describes the requirements adults must
meet to be qualified as supporters in SDMAs.
13.56.030: Sets the parameters for what a SDMA
must contain to be legitimate. Also deals with
alternate supporters and sharing of information
amongst supporters.
13.56.040: This section lays out the precise
requirements for a SDMA to be valid, and how the
principal and supporter(s) may formalize the signing
of the SDMA.
13.56.050: Mandates that each supporter
acknowledge their relationship with the principal and
their responsibilities to support the principal.
13.56.060: Delineates who a witness to the
signing of the SDMA can and cannot be.
13.56.070: Clarifies when a SDMA becomes
effective and how long they last.
13.56.080: This section details how either a
principal or supporter(s) of a SDMA may terminate all
or portions of a SDMA. Likewise, explains what happens
to a SDMA if only portions of it are terminated.
13.56.090: States the general duties of
supporters.
13.56.100: Outlines the areas of a principal's
life, including health, finances, education and
communication, that a supporter may provide support
in. Also provides a way for supporters to help the
principal deal with health information covered under
federal healthcare privacy laws.
13.56.110: Prohibits supporters from wrongfully
guiding and influencing the principal in a harmful
manner. This section also prohibits supporters from
using or obtaining the principal's personal
information without their consent.
13.56.120: Requires the supporter(s) of a
principal to keep all information related to the
principal confidential, protected and shielded from
unauthorized use.
13.56.130: Directs people who interact with
principals/supporter(s) to recognize the
communication, requests and decisions made by the
principal (with support from the supporter(s)) as if
that communication, request or decision was made
solely by the principal.
13.56.140: This section absolves a person (for
three distinct reasons) from civil or criminal
liability or discipline for unprofessional conduct if
they either comply or decline to comply with an
authorization in a SDMA.
13.56.150: Delineates the circumstances in which
a principal is capable and has capacity. A principal
doesn't lack capacity based on how they communicate.
Likewise, a principal may make decisions without the
support of a supporter(s). Lastly, the existence of a
SDMA doesn't mean a principal lacks capacity.
13.56.160: Deals entirely with the affairs of a
principal that a SDMA may cover. Work, healthcare,
support services education, finances, living
arrangements and more are all discussed.
13.56.170: This section spells out the multitude
of support services, as referenced in 13.56.160, that
supporter may provide the principal as agreed upon in
the SDMA.
New Section: 13.56.180: This section creates a
statutory form for supported decision-making
agreements as prescribed in the other sections of HB
336.
1) Introduction: Principal declares their desire
to enter a SDMA.
2) Supporters: Supporters fill out their
information and select what they will be helping the
principal with. Provides for an alternate supporter to
enter the SDMA.
3) Information Access Forms: Enables supporters
to obtain the principal's private information.
4) Guardians and Conservators: Principal must
declare whether they have a guardian or conservator.
5) Notice to Third Parties: Outlines the rights
and obligations of supporters and ensures that a third
party must recognize a principal's request or decision
as declared under AS 13.56.130.
6) Duration and Termination of Agreement:
Principals may end the agreement at any time by giving
notice to their supporters.
7) Signature of Principal: Recognition of
voluntary signature of the principal to enter the SDMA
8) Signatures of Supporters: Self explanatory
9) Declaration of Supporters: Supporters and
possible alternate supporter sign again and
acknowledge their role to help the principal with the
mutually agreed upon terms.
10) Notarization or Witnessing: Provides area for
notary or two witnesses to sign and make the SDMA
official.
11) Approval by Guardian: Space for the guardian
to approve the principal entering the SDMA.
12) Approval by Conservator: Space for a
conservator to approve the principal entering the
SDMA.
13.56.190: Definitions
13.56.195: The short title of House Bill 336 is the
Supported Decision-Making Agreements Act.
Section 2: Amends Alaska Court Rule 402, Alaska Rules
of Evidence, to clarify that the execution of a SDMA
cannot be used as evidence of a principal's
incapacity.
Section 3: Amends the uncodified law of Alaska by
amending Court Rule 402 and clarifies the two-thirds
majority vote of each house needed to achieve such
action.
3:09:05 PM
REPRESENTATIVE KOPP asked whether it is the intent of this
legislation to have a non-governmental private party support
persons regardless of the age of the adult. While noting that
this legislation is for adults, he said he could imagine an 18-
year old with certain disabilities to end of life situations to
have something outside of the standard guardian relationship.
It appears that no money is involved in this legislation, and it
is simply an agreement, he opined.
MR. RODVICK said that Representative Kopp "hit the nail on the
head," because the point of supported decision-making agreements
is that they are non-governmental agreements between private
citizens. Under this legislation there are no extraneous
regulations created, there is a zero-fiscal note, and the
sponsor was able to "smooth things out" with the Department of
Health and Social Services (DHSS). The goal is to ensure that
these individuals have support networks of their family, their
friends, and individuals they know, to help them throughout
their life whether it be dealing with their taxes or otherwise.
3:10:56 PM
REPRESENTATIVE EASTMAN commented that most of the public does
not know what these supported decision-making agreements are,
and if someone from the public were to ask whether it could be
used to help someone end their life, he asked how Mr. Rodvick
would respond.
MR. RODVICK responded that the legislation does not presume that
individuals will be using supported decision-making agreements
to terminate their lives, its intent is to help people make
decisions to promote and ensure that they have positive lives
and positive outcomes. He referred to CSHB 366, Sec.
13.56.140(3) "Limitation of liability," page 3, lines 12-18,
which read as follows:
(3) declining to comply with an
authorization related to health care in a supported
decision-making agreement, if the person is declining
because the action proposed to be taken under the
supported decision-making agreement is contrary to the
good faith medical judgment of the person or to a
written policy of a health care institution that is
based on reasons of conscience.
MR. RODVICK explained that if the doctor has the good conscience
and the written policy of a health care institution that does
not believe in terminating life before its natural end, they can
certainly object. He opined that Alaska has not gone down the
road of permitting [end of life efforts].
3:12:58 PM
REPRESENTATIVE EASTMAN offered a scenario of a series of people
who all want to be involved in helping someone end their life
and they decide to use this process to pursue that goal, he
asked whether anything in the bill would prohibit those actions.
MR. RODVICK deferred to Anne Applegate of the Governor's Council
on Disabilities and Special Education, and opined that the
protections currently outlined in law would protect people from
going down that road and it is not currently under the purview
of the legislation.
3:14:07 PM
REPRESENTATIVE LEDOUX opined that under current Alaska law
assisting someone with suicide is a crime and suicide itself is
considered a crime.
REPRESENTATIVE KOPP clarified (Indisc.) would already be a crime
so anyone assisting someone in terminating their life would be
in trouble, and this bill is neutral on that issue, it does not
facilitate suicide.
3:15:16 PM
CHAIR CLAMAN opened public testimony on HB 366.
3:16:00 PM
ANNE APPLEGATE, Program Coordinator, Governor's Council on
Disabilities and Special Education, explained that the
Governor's Council on Disabilities and Special Education is the
inner-agency coordinating council for the infant learning
program, and is also the special education and (Indisc.) panel
for the Department of Education and learning development. The
council's members are the real movers behind HB 336, and the
majority of its members are those who experience disabilities or
are the family members of people with disabilities. It is their
commitment to SDMAs that brought HB 336 to the House Judiciary
Standing Committee, and continues to be the compelling force
behind this legislation. Ms. Applegate, in response to
Representative Eastman's concern, advised that the section that
dictates what type of decision-making assistance can be made is
under AS 13.56.100. Beyond looking at the specific language in
each of those subsections which provides detailed types of
support, the theme running through those subsections is about
providing assistance for a thought process, not for any type of
action. Therefore, she pointed out, in the event the discussion
was about something that was a legal action, there would not be
that type of assistance from someone supporting a thought
process.
3:18:29 PM
IAN MINER advised he is representing himself, and when he turned
18, his high school recommended that his parents obtain
guardianship in order to make his decisions as to his education,
medical entities, and finances. (Audio difficulties) 10-minute
hearing with the judge and that his parents/guardians could not
make decisions without discussing it with him first. His
parents have always helped him with his goals, he moved into his
own home, has a full-time job, and a car. He advised that when
he turned 23, his family hired a lawyer and began the two-year
process of having the order removed. (Indisc.) power of
attorney for his finances, and Supported Decision-Making
Agreements were not even an idea in Alaska when he turned 18.
In the event it had been an option, that is probably the road
they would have taken so he could have described the help and
information he wanted with the financial decisions that made him
secure. He also would have retained his rights. He
acknowledged that he does not know how his life would have been
different, but he now knows that he did not need a full
guardianship.
3:20:42 PM
KEN HELANDER, Advocacy Director, American Association of Retired
Persons (AARP), explained that the American Association of
Retired Persons Alaska is the state's largest member
organization. He related that he has the privilege of working
with the American Bar Association's Working Interdisciplinary
Networks of Guardianship Stakeholders (WINGS) project, which
looks for alternatives to court appointed guardianship. While
SDMAs are more and more common for people with developmental
disabilities, the concept is also increasingly recognized as a
useful tool for older people and advanced planning. He stressed
that AARP fully supports SDMAs and was involved in the other
states, notably Texas and Delaware, where similar legislation
was passed and implemented. The AARP works with stakeholder
groups for the assistance and development of tools to guide
named supporters in their roles and offer families and affected
individuals a framework tailored for the types of problems older
people can face that could lead to the need for a guardian. He
related that AARP Alaska will certainly do the same for this
state. He said SDMA are particularly useful for people with a
diagnosis of early stage dementia, such as Alzheimer's Disease.
These individuals have enough impairment to make a diagnosis,
but also have sufficient capacity to continue to make most of
their decisions. Nevertheless, whether by such a diagnosis or
simply by age, often these individuals become invisible to
medical providers, banks, and even family members and friends.
He offered that people will often direct conversations to the
spouse or to an adult child as though the older person was not
present and could not possibly understand anyway. Not only is
this a gross misunderstanding of the disease, it denies the
older person the dignity and respect of self-determination and
making choices. The SDMA utilizes the practice familiar to
everyone seeking council from trusted family, friends, and
professionals. The SDMAs simply structure that practice into a
legal framework which can guide decisions that must be made when
the older person's capacity may diminish as the disease
progresses. Rather than becoming invisible and ignored, SDMAs
keep the affected individual at the center of the decision-
making process. He encouraged the passage of HB 336 as a useful
tool for advanced planning.
3:23:34 PM
HEIDI KELLY advised that she represents herself as a self-
advocate for the Governor's Council on Disabilities and Special
Education. She stressed that she is honored to voice how this
legislature's actions directly affect Alaskans with
disabilities, including her and her son. Their lives are
impacted by the decisions of this legislature, and she offered
testimony as follows:
You cannot wait another second to pass this bill into
law. To understand my passion for testifying today,
my son, my daughter, and I are all on the autism
spectrum. Autism doesn't define who I am or who I
continue to become (Audio difficulties.) I am a part
of the Council appointed to use my voice for the
Governor's Council on Disabilities and Special
Education. I am an autistic speaker advocate
(indisc.) professionals and different community
members at many venues throughout Alaska with the help
of people expanding me to become a national speaker.
I have an autism-based business and have accomplished
many other things, and I hope to simply inspire
others. People never thought it would be possible
since I was the typical autistic kid that people
assume autism is all about. But I have grown up, I
learn along the way, and I continue to make a
difference. This is to simply show that if people
decided to take full guardianship of me, and not
(indisc.) my side support and teach me to use my voice
to make my own decisions with proper education, I
would not be who I am today. Full guardianship takes
away your voice when you have one to use. When my son
turned 17, I was structured to become his guardian.
Full guardianship does not work for my family, but a
Supported Decision-Making Agreement allows us to have
a voice of our own lives, yet receive all of the
information and support we need to make proper
decisions for ourselves and live our lives to the
fullest, and what would be the best route for us.
Being who I am, what I've gone through, and knowing
what my son can become, I will not take his voice
away. If any person with disabilities has any form of
communication, they should not have a court system or
a family member take their voice away from them. We
deserve a community that helps us do everything
possible to achieve our very best. Because people
allowed me to make my own decisions and give me help
with what I need, I'm here today to make a difference
because people came along my side to help me to do
that. Passing this bill is a must to help Alaskans
with disabilities have better lives. When you do what
you need to do today, you help all of us become the
best we can be. (Audio difficulties) logical part of
autism, it is still logical to use the power you have
to do the job you signed up for, which is to make a
difference for the Alaskan people. So, I thank you
ahead of time from me and many others when you move
forward with this bill. Don't wait another second or
push this off one more minute because the most
important decision you make starts right now. Thank
you.
3:27:17 PM
CHAIR CLAMAN, after ascertaining no one wished to testify,
closed public testimony on HB 336.
3:27:28 PM
CHAIR CLAMAN asked Mr. Rodvick whether the Commission on Uniform
Laws has taken a position or performed any work on this
particular concept.
MR. RODVICK responded that he did not believe so, but his office
has not heard from the Commission on Uniform Laws.
CHAIR CLAMAN noted that the Commission on Uniform Laws typically
does not perform outreach and may not contact his office. He
asked that prior to the next hearing to research whether this a
particular subject within which the commission has performed
work because it is always interesting to see whether there is
any evolving consensus that would be reflected in model
legislation.
3:27:59 PM
REPRESENTATIVE KOPP asked Chair Claman to explain to Mr. Rodvick
the types of directives involved with the Commission on Uniform
Laws.
CHAIR CLAMAN advised that he would speak with Mr. Rodvick after
this meeting.
[HB 336 was held over.]