October 18, 2023 • 24 mins
ETB 58: What if the future of your loved one with a disability could be bright, secure, and filled with choices and alternatives? Envision a world where guardianship isn't the only path, where supported decision-making reigns supreme, and personal rights are preserved. This episode offers a detailed dissection of guardianship and its alternatives, shedding light on the game-changing Right to Make Choices supported-decision making toolkit - a Texas-based initiative.
We take you on a journey through the pivotal Jenny Hatch case and the subsequent reform of the Texas guardianship system in 2015, highlighting the importance of considering alternatives to guardianship such as medical power of attorney, durable power of attorney, and more. Hear the ins and outs of these alternatives, and how they can shape a brighter future for your loved ones. So, tune in, soak up the knowledge, and empower yourself to make informed decisions that truly make a difference.
Supported Decision-Making Toolkit:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf
Supported Decision Making Agreement - see page 89-90 in the link below:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf
Guardianship in Texas
https://www.hhs.texas.gov/regulations/legal-information/guardianship
Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sandy Deppisch (00:05):
Hey there, I'm Sandy Deppish, and this is the
Embrace the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Hey guys, welcome back.
So, thinking about what thisepisode today was going to be
about, it dawned on me thatsomething I think any parent
(00:50):
that has a child with adisability needs to know about
is guardianship and alternativesto guardianship.
So I wanted to think of this,or I want you to think of this,
as an audio book you'relistening to.
An amazing friend of mineprinted out lots of information
from the website and I'll postthe link below in the show notes
(01:12):
in case you want to go to thatwebsite yourself and find all
this information and print itout to read over at your leisure
.
She printed all thisinformation out and put it in a
binder for me, which is just sothoughtful, just really
excellent information that Ithink needs to be shared.
So if you're running errands,if you're driving in the car if
(01:32):
you're shopping, maybe justdoing chores at home.
You might want to listen tothis and, like I said, think of
it as an audio book.
I'm not going to readeverything to you.
I'm just going to read what Ithink are some key points, so
that it's kind of like aspringboard for you to look into
this further and make somedecisions about what it is you
want to do for your family.
(01:53):
Every family is different.
Every family makes choicesbased on what will work best for
them.
This is just information foryou.
If you have a child who's aboutto turn 18, guardianship an
alternative to guardianship willbe something you need to make a
decision about.
So this booklet is called theRight to Make Choices a
supported decision makingtoolkit for people with
(02:13):
disabilities and theirsupporters.
So in the introduction it saysall of us have the right to make
decisions about our lives, andgetting support to make
decisions from people we trustis something we all do.
If a decision is important tous, we may take longer to decide
and may ask other people forideas or information or to help
us make up our mind by talkingabout the options.
(02:35):
There may be times in our liveswhen we need extra support to
make decisions, especially whenwe have to make a major decision
.
People with disabilities havethe same rights to make
decisions as everyone else.
However, many people withdisabilities have not had the
same opportunities to makedecisions and develop the skills
and knowledge to direct theirown lives.
(02:56):
Texas was the first state torecognize supported decision
making as an alternative toguardianship.
Supported decision making is apractical way for a person with
a disability to get the helpthey may need to make their own
decisions and ensure that thosedecisions are heard by those
around them.
With supported decision making,a person with a disability
(03:18):
enters into a voluntaryagreement with someone he or she
trusts to help them makedecisions and communicate the
decisions to others.
The supporter could be a familymember, friend, service
provider or someone else chosenby the person.
Supported decision making maynot only help a person with a
disability avoid guardianship,but may also help the person
(03:39):
develop his or her decisionmaking skills and develop
confidence in his or her abilityto make decisions.
So guardianship is somethingthat I had heard all along, from
the time Josiah was little,that when he turns 18, we will
need to get guardianship of him.
I just figured that was kind oflike a rite of passage your
child turns 18, you become theirguardian.
(04:01):
I never questioned it.
I never read into it, readabout it, tried to educate
myself on it.
Granted, we were going throughsome major crises during most of
his earlier childhood anddefinitely during the adolescent
years, but it's something thatI should have thought to educate
myself on.
I didn't.
(04:22):
Thankfully, somewhere before heturned 18, I had someone talk
to me about options that wereavailable to us.
So another section I'm gonnasplit you in this booklet is the
section on guardianship, andhere's what it says Guardianship
is the legal process todetermine if a person is
incapacitated.
A court decides if, due to aphysical or mental condition, an
(04:46):
individual is substantiallyunable to manage their financial
affairs, care for theirphysical health or provide food,
clothing or shelter forthemselves.
Under a guardianship, someoneis appointed to make decisions
on behalf of the incapacitatedperson, referred to as the ward.
Guardianship severely limits anindividual's civil rights and
(05:07):
decision-making.
Therefore, guardianship shouldalways be the last resort for an
individual with a disability.
As I mentioned earlier, we justkind of understood as Josiah
was growing up that guardianshipwas going to be the next step
when he turned 18.
We did not understand that itwas something that should have
(05:28):
been considered as a last resort.
To us, it was like the onlyresort.
We had no idea that there wereother options available.
That's why I want to share thisinformation with you.
Guardianship might be justexactly what you want for your
family, and that's great, but Ido think it's important to be
educated, to know that there areoptions available, and perhaps
there is something else thatyou'd like to do besides
(05:49):
guardianship.
So, to continue, it saysfortunately, there are many
alternatives to guardianshipavailable to help individuals
with disabilities make decisionswithout taking away their
rights.
There are two types ofguardianship guardian of the
person and guardian of theestate.
A guardian of the person isresponsible for the physical
well-being of the person underguardianship.
(06:10):
Their responsibilities mayinclude making medical decisions
, choosing where the personlives and ensuring that he or
she has food and clothes.
A guardian of the estate isresponsible for the person's
property and assets.
One person can be both guardianof the person and guardian of
the estate, or two differentpeople can assume those roles.
Not every person underguardianship will have both
(06:33):
types of guardians.
Both types of guardianship canbe either full or limited.
Under a limited guardianship,the judge gives the guardians
only certain rights andresponsibilities, while allowing
the individual with adisability to keep the rights
not granted to the guardian.
Under a full guardianship, anindividual loses many of his or
her civil rights, including theright to drive, choose where to
(06:55):
live and work, vote, choose toget married and consent to
medical treatment.
Guardianship is a legal processwhere decisions about whether an
individual needs a guardian and, if so, the scope of the
guardianship are made by a judge.
An individual seeking to becomeguardian is called an applicant
and must be represented by anattorney to obtain guardianship.
(07:17):
The applicant files anapplication for guardianship
stating the reasons he or shebelieves guardianship is
necessary.
However, whether guardianshipis appropriate for a particular
person is a medical decision,and a court will not grant a
guardianship application unlessa physician provides his or her
opinion about whether theindividual is unable to make
(07:38):
decisions on his or her own,with or without support.
Completing a physiciancertificate of medical
examination For the CMEcertificate of medical
examination, a doctor provideshis or her opinion about the
individual's ability to makedecisions with or without
support.
After the application has beenfiled, an attorney will be
appointed to represent thedesires of a person with a
(07:59):
disability.
In some cases, a guardian mayalso be appointed to advocate
for the best interest of theperson with a disability.
A court hearing is then held.
The judge has the ultimateauthority to decide whether or
not someone needs a guardian andif the guardianship should be
full or limited.
The judge also has the finalsay in who is appointed guardian
.
The judge may decide, forexample, that the applicant is
(08:22):
unfit to be guardian and canappoint someone else to fill
that role.
Texas law requires that probatecourts consider alternatives to
guardianships and supports andservices before a guardianship
is created Under the law.
Before appointing a guardian,the court must find, by clear
and convincing evidence, thatalternatives to guardianship and
(08:43):
supports and services have beenconsidered and determined not
to be feasible.
If the court grants a limitedguardianship, the court order
must specify the rights retainedby the proposed ward, with or
without supports and services.
The court must also statewhether the proposed ward has
ability to make decisions aboutresidents voting and operating a
(09:05):
motor vehicle.
Obtaining guardianship can bean expensive and complicated
process.
This must hire an attorney andpay a fee to file the applicant
for guardianship.
There may also be costsassociated with required medical
exam.
The guardian must also post abond with the court if the
application is granted.
Once a guardianship isestablished, the guardian has
many responsibilities.
(09:25):
Each year, a guardian of theestate must file an accounting
explaining what money wasreceived and how exactly money
was spent.
A guardian of the person mustfile an annual report on the
conditions of the person underguardianship.
In addition, guardians mustfulfill all duties granted to
them by the court and may beasked to justify decisions they
(09:45):
have made on behalf of theperson with a disability.
Another issue to consider isthat many people with
disabilities do not want aguardian.
People with disabilities desireto have decision-making power
over their own lives, even ifthey sometimes need additional
support.
Pursuing a guardianship when aperson does not agree can lead
to family conflict.
(10:06):
Additionally, once aguardianship is established,
changing or ending it can bedifficult.
This underscores the importanceof looking at all available
alternatives to guardianship,including supported
decision-making, before pursuingguardianship.
It is up to the judge to decidewhether to change or terminate
(10:26):
a guardianship.
Because guardianship takes awaya person's rights, a court must
consider less restrictivealternatives before granting a
guardianship.
Alternatives to guardianship canbe used to avoid the need for
guardianship.
In addition to supporteddecision-making, texas law
recognizes a number ofalternatives to guardianship,
including, but not limited tothe following Medical power of
(10:50):
attorney, cr, nel.
Durable power of attorney.
Declaration for mental healthtreatment representative payee
trusts and savings accounts.
Joint bank account.
Designation of guardian beforethe need arises.
Alternate forms of decisionmaking based on person-centered
planning.
Supported decision makingagreement.
(11:12):
While not all alternatives toguardianship may be appropriate
for the individual or his or hercircumstances, there is
information on severalalternatives to consider before
pursuing guardianship.
So all of those alternativesthat I just mentioned above
there are nine of them havedetailed information about what
those consist of and what isrequired in order to make that
(11:36):
happen.
I think I'm going to save thosefor another day, because this
is a lot to take in, and I thinkthe biggest thing is right now
for you to understand thatguardianship is not the only way
to go.
There are other optionsavailable.
So at the heart of supporteddecision making is a simple
premise Everyone receives helpfrom people they trust to make
(11:58):
important life decisions.
Even if people with disabilitiesneed extra support or a
different kind of support tomake decisions, it does not mean
that they cannot make decisionsor that their right to make
decisions should be taken awaythrough guardianship.
Supported decision making is aprocess of supporting and
accommodating an adult with adisability to make their own
(12:19):
choices, using a supporteddecision making agreement.
An adult with a disabilitychooses another adult they trust
to serve as their supporter andto help them make decisions and
live a more self determinedlife.
Under a supported decisionmaking agreement, the supporter
cannot make a decision for theperson with a disability.
The supporter can, however,help a person with a disability.
(12:41):
They can help them understandthe options, responsibilities
and consequences of theirdecisions.
They can help them obtain andunderstand information relevant
to their decisions, includingmedical, psychological,
financial, educational andtreatment records.
They can communicate theirdecisions to the appropriate
people.
Supported decision makingempowers people with
(13:04):
disabilities to use availablesupport to make their own
choices so they can live moreindependent and self directed
lives.
In 2009, the Texas legislaturepassed a law to create a
supported decision making pilotproject run by the arc of San
Angelo and administered by theTexas Department of Aging and
Disability Services.
Over three years, the pilottrained volunteers to assist
(13:26):
individuals with intellectual ordevelopmental disabilities
living in a state supportedliving center to make their own
decisions, using supporteddecision making as an
alternative to guardianship.
In 2013, the Jenny Hatch casereceived national attention when
she became the first person inthe country to have a court
order the use of supporteddecision making instead of
(13:47):
guardianship for a person with adisability.
The previous year, jenny Hatch,a 29 year old woman with Down
syndrome, was placed underguardianship and lost her right
to do many things she loved,including seeing her friends and
using her cell phone and laptop.
With the help of quality trustfor individuals with
disabilities, jenny won back herright to make her own decisions
(14:08):
using supported decision making.
She now lives and works whereshe wants and has the friends
she chooses.
In 2015, many advocates cametogether to work on reforming
the Texas guardianship system.
As a result, the Texaslegislature passed the nation's
first law specificallyidentifying supported decision
making as an alternative toguardianship.
(14:30):
Supported decision making can beused by any adult who has a
disability.
While supported decision makingis a good alternative to
guardianship for many peoplewith disabilities, it may not be
appropriate for everyone.
The person with a disabilitymust have the ability to
understand what supporteddecision making is, and must
have the capacity to choose whohe or she wants to be his or her
(14:51):
supporter and what kind ofdecisions he or she needs help
making.
The supporter can be any adultthe person with a disability
chooses.
However, the supporter shouldbe someone that the adult with a
disability trusts.
Often this will be a familymember or friend who knows the
person with a disability well.
After a supporter is selected,the person with a disability and
his or her supporter can thenfill out a supported decision
(15:13):
making agreement together.
The person with a disabilityand his or her supporter can use
the sample supporteddecision-making agreement found
in section 1357.056A of theTexas Estates Code, or any form
consistent with that one.
I'll post a link to a versionof that form in the show notes
(15:34):
so that you can take a look atthat and download it if it's
something that you're interestedin.
Filling out the form does notrequire going to court, having
an attorney or paying a fee.
For the agreement to be valid,it needs to be witnessed by two
people over the age of 14 or anoted republic.
On the supporteddecision-making agreement,
people with disabilities canspecify what kind of decisions
(15:56):
they want help making andwhether they want their
supporters to be able to accesstheir private health and
education records.
A person with a disability canhave multiple supporters to help
with different kinds ofdecisions.
The individual will just needto fill out a separate form with
each supporter.
The person with a disability orthe supporter can keep the
original form, and copies can beprovided to professionals who
(16:16):
work with the individual, suchas doctors, teachers, service
providers and others.
According to the law, people whoreceive a copy of the supported
decision-making agreementcannot be held to criminal or
civil liability or professionalmisconduct, as long as they act
in good faith to what is in theagreement.
Having a supporteddecision-making agreement does
(16:36):
not guarantee that someone canprovide informed consent.
The person with a disabilitystill needs to demonstrate that
he or she has the capacity tomake a particular decision.
The supporter's role is to helpthe person with a disability to
understand and communicate whatis needed to provide informed
consent.
Under Texas law, a supporteddecision-making agreement
(16:57):
creates a fiduciary relationshipbetween the supporter and a
person with a disability.
This fiduciary duty requiresthe supporter to act loyally, in
good faith and withoutself-interest.
The supporter must also avoidconflicts of interest.
A supporter could be heldliable for violating these
duties.
Through supporteddecision-making, an adult with a
(17:17):
disability can authorize his orher supporter to help him or
her access confidentialinformation.
This includes things likemedical and school records.
While the agreement mayauthorize the supporter to
assist with obtaining records.
The adult with a disabilitywill need to fill out an
authorization to releaseconfidential information form.
The supporter must make surethe information obtained is kept
(17:39):
confidential and is only usedto support the adult with a
disability.
The person with a disabilitycan also get confidential
information on his or her ownwithout the assistance of the
supporter.
Here are the four reasons.
A supported decision-makingagreement can end the adult with
a disability or the supportercan choose to end the agreement
at any time.
The adult with a disability andthe supporter can put a
(18:02):
termination date on thesupported decision-making
agreement.
The agreement endsautomatically if the Department
of Family and ProtectiveServices finds that the
supporter has abused, neglectedor exploited the adult with a
disability.
The agreement endsautomatically if the supporter
is found criminally liable forthe abuse, neglect or
exploitation of the individualwith a disability.
(18:24):
Supported decision-making canbe used along with other
alternatives to guardianship.
For example, an adult with adisability may need a
representative payee for SSI, aspecial needs trust to protect
assets and to help plan for thefuture, or a medical power of
attorney for medical decisionsif he or she becomes
(18:44):
incapacitated, while having asupported decision-making
agreement to get support withother kinds of decision-making.
It is important to remember thatthere is no one-size-fits-all
alternatives to guardianship.
The key is to take aperson-centered approach so that
the adult with a disability canchoose alternatives to
guardianship that provide thesupport they need to help them
(19:06):
reach their goals.
If a person who receives or isaware of a supported
decision-making agreement hasreason to believe that the
supporter is abusing, neglectingor exploiting the adult with a
disability, the person mustreport this information.
So now let me go over thesupported decision-making
agreement and what that lookslike.
It's a two-page form oractually just one page if you do
(19:29):
front and back and it says thisagreement is governed by the
Supported Decision-Making Act,chapter 1357 of the Texas Estate
Code.
This supported decision-makingagreement is to support and
accommodate an individual with adisability to make life
decisions, including decisionsrelated to where and with whom
the individual wants to live,the services, supports and
(19:51):
medical care the individualwants to receive, and where the
individual wants to work,without impeding the
self-determination of theindividual with a disability.
This agreement may be revokedby the individual with a
disability or his or hersupporter at any time If either
the individual with a disabilityor his or her supporter has any
questions about the agreement,he or she should speak with a
(20:14):
lawyer before signing thesupported decision-making
agreement.
And then it says I the name ofthe adult with a disability is
written in am entering into thisagreement and voluntarily
choose they enter the name ofthe supporter to be my supporter
.
The supporter's address islisted, their phone number and
their email address.
My supporter may help me withlife decisions about and then
(20:37):
there's an option to choose yesor no for each of these
categories Obtaining food,clothing and a place to live, my
physical health, my mentalhealth, managing my money or
property, getting an educationor other training, choosing and
maintaining my services andsupports finding a job.
(20:58):
Other.
My supporter does not makedecisions for me.
To help me make decisions, mysupporter may help me get the
information I need to makemedical, psychological,
financial or educational choices, help me understand my choices
so I can make the best choicefor me, or help me communicate
(21:19):
my decision to the right people.
Yes or no, my supporter may seemy private health information
under the Health InsuranceSupportability and
Accountability Act of 1996.
I will provide a signed release.
Yes or no?
My supporter may see myeducational records under the
Family Educational Rights andPrivacy Act of 1974.
(21:39):
I will provide a signed release.
This agreement starts whensigned and will continue until
and there's a space to put adate or until my supporter and I
end the agreement or theagreement ends by law.
Sign this day, you put themonth and the year.
The adult with the disabilitysigns and the printed name of
(22:03):
the adult with the disability islisted there.
It says important informationfor supporters when you agree to
provide support to an adultwith a disability under the
supported decision-makingagreement, you have a duty to
one act in good faith.
Two, act loyally and withoutself-interest and three, avoid
conflicts of interest.
Then on the back it's theconsent of the supporter.
(22:24):
So the supporter lists his orher name, says consents to act
as a supporter under thisagreement.
The supporter signs their nameand prints it.
This agreement must be signedin front of two witnesses and
there's a space for twowitnesses to sign, or a notary
public and there's a spot forthe notary public to sign, and
that's it.
That's all that's involved insupported decision-making.
(22:46):
So those are the two majoroptions guardianship or
supported decision-making.
I might, at a later date, gointo depth on some of those
other alternatives toguardianship that I mentioned
earlier.
It just depends on how lengthy.
I haven't read through all ofthose, so it depends how lengthy
those are, but again, I willput the link below to all this
(23:07):
information that you candownload online and you can read
over it so that you can makethe best decision for your
family.
You know, having a child with adisability changes everything.
It makes life just a littlemore.
Just a little more, I guess, isthe best way to say that.
And when it comes todetermining the future for your
(23:28):
young adult with a disability, Ithink it requires a lot more.
So you owe it to yourself, youowe it to your young adult, you
owe it to your family to makethe best educated choice that
you can, and I hope thisinformation has been helpful.
Thanks for listening to theEmbrace the Blessing podcast.
Visit embracetheblessingcomslash podcast for show notes and
(23:50):
links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
Hey there, I'm Sandy Deppish, and this is the
Embrace the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Hey guys, welcome back.
So, thinking about what thisepisode today was going to be
about, it dawned on me thatsomething I think any parent
(00:50):
that has a child with adisability needs to know about
is guardianship and alternativesto guardianship.
So I wanted to think of this,or I want you to think of this,
as an audio book you'relistening to.
An amazing friend of mineprinted out lots of information
from the website and I'll postthe link below in the show notes
(01:12):
in case you want to go to thatwebsite yourself and find all
this information and print itout to read over at your leisure
.
She printed all thisinformation out and put it in a
binder for me, which is just sothoughtful, just really
excellent information that Ithink needs to be shared.
So if you're running errands,if you're driving in the car if
(01:32):
you're shopping, maybe justdoing chores at home.
You might want to listen tothis and, like I said, think of
it as an audio book.
I'm not going to readeverything to you.
I'm just going to read what Ithink are some key points, so
that it's kind of like aspringboard for you to look into
this further and make somedecisions about what it is you
want to do for your family.
(01:53):
Every family is different.
Every family makes choicesbased on what will work best for
them.
This is just information foryou.
If you have a child who's aboutto turn 18, guardianship an
alternative to guardianship willbe something you need to make a
decision about.
So this booklet is called theRight to Make Choices a
supported decision makingtoolkit for people with
(02:13):
disabilities and theirsupporters.
So in the introduction it saysall of us have the right to make
decisions about our lives, andgetting support to make
decisions from people we trustis something we all do.
If a decision is important tous, we may take longer to decide
and may ask other people forideas or information or to help
us make up our mind by talkingabout the options.
(02:35):
There may be times in our liveswhen we need extra support to
make decisions, especially whenwe have to make a major decision
.
People with disabilities havethe same rights to make
decisions as everyone else.
However, many people withdisabilities have not had the
same opportunities to makedecisions and develop the skills
and knowledge to direct theirown lives.
(02:56):
Texas was the first state torecognize supported decision
making as an alternative toguardianship.
Supported decision making is apractical way for a person with
a disability to get the helpthey may need to make their own
decisions and ensure that thosedecisions are heard by those
around them.
With supported decision making,a person with a disability
(03:18):
enters into a voluntaryagreement with someone he or she
trusts to help them makedecisions and communicate the
decisions to others.
The supporter could be a familymember, friend, service
provider or someone else chosenby the person.
Supported decision making maynot only help a person with a
disability avoid guardianship,but may also help the person
(03:39):
develop his or her decisionmaking skills and develop
confidence in his or her abilityto make decisions.
So guardianship is somethingthat I had heard all along, from
the time Josiah was little,that when he turns 18, we will
need to get guardianship of him.
I just figured that was kind oflike a rite of passage your
child turns 18, you become theirguardian.
(04:01):
I never questioned it.
I never read into it, readabout it, tried to educate
myself on it.
Granted, we were going throughsome major crises during most of
his earlier childhood anddefinitely during the adolescent
years, but it's something thatI should have thought to educate
myself on.
I didn't.
(04:22):
Thankfully, somewhere before heturned 18, I had someone talk
to me about options that wereavailable to us.
So another section I'm gonnasplit you in this booklet is the
section on guardianship, andhere's what it says Guardianship
is the legal process todetermine if a person is
incapacitated.
A court decides if, due to aphysical or mental condition, an
(04:46):
individual is substantiallyunable to manage their financial
affairs, care for theirphysical health or provide food,
clothing or shelter forthemselves.
Under a guardianship, someoneis appointed to make decisions
on behalf of the incapacitatedperson, referred to as the ward.
Guardianship severely limits anindividual's civil rights and
(05:07):
decision-making.
Therefore, guardianship shouldalways be the last resort for an
individual with a disability.
As I mentioned earlier, we justkind of understood as Josiah
was growing up that guardianshipwas going to be the next step
when he turned 18.
We did not understand that itwas something that should have
(05:28):
been considered as a last resort.
To us, it was like the onlyresort.
We had no idea that there wereother options available.
That's why I want to share thisinformation with you.
Guardianship might be justexactly what you want for your
family, and that's great, but Ido think it's important to be
educated, to know that there areoptions available, and perhaps
there is something else thatyou'd like to do besides
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guardianship.
So, to continue, it saysfortunately, there are many
alternatives to guardianshipavailable to help individuals
with disabilities make decisionswithout taking away their
rights.
There are two types ofguardianship guardian of the
person and guardian of theestate.
A guardian of the person isresponsible for the physical
well-being of the person underguardianship.
(06:10):
Their responsibilities mayinclude making medical decisions
, choosing where the personlives and ensuring that he or
she has food and clothes.
A guardian of the estate isresponsible for the person's
property and assets.
One person can be both guardianof the person and guardian of
the estate, or two differentpeople can assume those roles.
Not every person underguardianship will have both
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types of guardians.
Both types of guardianship canbe either full or limited.
Under a limited guardianship,the judge gives the guardians
only certain rights andresponsibilities, while allowing
the individual with adisability to keep the rights
not granted to the guardian.
Under a full guardianship, anindividual loses many of his or
her civil rights, including theright to drive, choose where to
(06:55):
live and work, vote, choose toget married and consent to
medical treatment.
Guardianship is a legal processwhere decisions about whether an
individual needs a guardian and, if so, the scope of the
guardianship are made by a judge.
An individual seeking to becomeguardian is called an applicant
and must be represented by anattorney to obtain guardianship.
(07:17):
The applicant files anapplication for guardianship
stating the reasons he or shebelieves guardianship is
necessary.
However, whether guardianshipis appropriate for a particular
person is a medical decision,and a court will not grant a
guardianship application unlessa physician provides his or her
opinion about whether theindividual is unable to make
(07:38):
decisions on his or her own,with or without support.
Completing a physiciancertificate of medical
examination For the CMEcertificate of medical
examination, a doctor provideshis or her opinion about the
individual's ability to makedecisions with or without
support.
After the application has beenfiled, an attorney will be
appointed to represent thedesires of a person with a
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disability.
In some cases, a guardian mayalso be appointed to advocate
for the best interest of theperson with a disability.
A court hearing is then held.
The judge has the ultimateauthority to decide whether or
not someone needs a guardian andif the guardianship should be
full or limited.
The judge also has the finalsay in who is appointed guardian
.
The judge may decide, forexample, that the applicant is
(08:22):
unfit to be guardian and canappoint someone else to fill
that role.
Texas law requires that probatecourts consider alternatives to
guardianships and supports andservices before a guardianship
is created Under the law.
Before appointing a guardian,the court must find, by clear
and convincing evidence, thatalternatives to guardianship and
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supports and services have beenconsidered and determined not
to be feasible.
If the court grants a limitedguardianship, the court order
must specify the rights retainedby the proposed ward, with or
without supports and services.
The court must also statewhether the proposed ward has
ability to make decisions aboutresidents voting and operating a
(09:05):
motor vehicle.
Obtaining guardianship can bean expensive and complicated
process.
This must hire an attorney andpay a fee to file the applicant
for guardianship.
There may also be costsassociated with required medical
exam.
The guardian must also post abond with the court if the
application is granted.
Once a guardianship isestablished, the guardian has
many responsibilities.
(09:25):
Each year, a guardian of theestate must file an accounting
explaining what money wasreceived and how exactly money
was spent.
A guardian of the person mustfile an annual report on the
conditions of the person underguardianship.
In addition, guardians mustfulfill all duties granted to
them by the court and may beasked to justify decisions they
(09:45):
have made on behalf of theperson with a disability.
Another issue to consider isthat many people with
disabilities do not want aguardian.
People with disabilities desireto have decision-making power
over their own lives, even ifthey sometimes need additional
support.
Pursuing a guardianship when aperson does not agree can lead
to family conflict.
(10:06):
Additionally, once aguardianship is established,
changing or ending it can bedifficult.
This underscores the importanceof looking at all available
alternatives to guardianship,including supported
decision-making, before pursuingguardianship.
It is up to the judge to decidewhether to change or terminate
(10:26):
a guardianship.
Because guardianship takes awaya person's rights, a court must
consider less restrictivealternatives before granting a
guardianship.
Alternatives to guardianship canbe used to avoid the need for
guardianship.
In addition to supporteddecision-making, texas law
recognizes a number ofalternatives to guardianship,
including, but not limited tothe following Medical power of
(10:50):
attorney, cr, nel.
Durable power of attorney.
Declaration for mental healthtreatment representative payee
trusts and savings accounts.
Joint bank account.
Designation of guardian beforethe need arises.
Alternate forms of decisionmaking based on person-centered
planning.
Supported decision makingagreement.
(11:12):
While not all alternatives toguardianship may be appropriate
for the individual or his or hercircumstances, there is
information on severalalternatives to consider before
pursuing guardianship.
So all of those alternativesthat I just mentioned above
there are nine of them havedetailed information about what
those consist of and what isrequired in order to make that
(11:36):
happen.
I think I'm going to save thosefor another day, because this
is a lot to take in, and I thinkthe biggest thing is right now
for you to understand thatguardianship is not the only way
to go.
There are other optionsavailable.
So at the heart of supporteddecision making is a simple
premise Everyone receives helpfrom people they trust to make
(11:58):
important life decisions.
Even if people with disabilitiesneed extra support or a
different kind of support tomake decisions, it does not mean
that they cannot make decisionsor that their right to make
decisions should be taken awaythrough guardianship.
Supported decision making is aprocess of supporting and
accommodating an adult with adisability to make their own
(12:19):
choices, using a supporteddecision making agreement.
An adult with a disabilitychooses another adult they trust
to serve as their supporter andto help them make decisions and
live a more self determinedlife.
Under a supported decisionmaking agreement, the supporter
cannot make a decision for theperson with a disability.
The supporter can, however,help a person with a disability.
(12:41):
They can help them understandthe options, responsibilities
and consequences of theirdecisions.
They can help them obtain andunderstand information relevant
to their decisions, includingmedical, psychological,
financial, educational andtreatment records.
They can communicate theirdecisions to the appropriate
people.
Supported decision makingempowers people with
(13:04):
disabilities to use availablesupport to make their own
choices so they can live moreindependent and self directed
lives.
In 2009, the Texas legislaturepassed a law to create a
supported decision making pilotproject run by the arc of San
Angelo and administered by theTexas Department of Aging and
Disability Services.
Over three years, the pilottrained volunteers to assist
(13:26):
individuals with intellectual ordevelopmental disabilities
living in a state supportedliving center to make their own
decisions, using supporteddecision making as an
alternative to guardianship.
In 2013, the Jenny Hatch casereceived national attention when
she became the first person inthe country to have a court
order the use of supporteddecision making instead of
(13:47):
guardianship for a person with adisability.
The previous year, jenny Hatch,a 29 year old woman with Down
syndrome, was placed underguardianship and lost her right
to do many things she loved,including seeing her friends and
using her cell phone and laptop.
With the help of quality trustfor individuals with
disabilities, jenny won back herright to make her own decisions
(14:08):
using supported decision making.
She now lives and works whereshe wants and has the friends
she chooses.
In 2015, many advocates cametogether to work on reforming
the Texas guardianship system.
As a result, the Texaslegislature passed the nation's
first law specificallyidentifying supported decision
making as an alternative toguardianship.
(14:30):
Supported decision making can beused by any adult who has a
disability.
While supported decision makingis a good alternative to
guardianship for many peoplewith disabilities, it may not be
appropriate for everyone.
The person with a disabilitymust have the ability to
understand what supporteddecision making is, and must
have the capacity to choose whohe or she wants to be his or her
(14:51):
supporter and what kind ofdecisions he or she needs help
making.
The supporter can be any adultthe person with a disability
chooses.
However, the supporter shouldbe someone that the adult with a
disability trusts.
Often this will be a familymember or friend who knows the
person with a disability well.
After a supporter is selected,the person with a disability and
his or her supporter can thenfill out a supported decision
(15:13):
making agreement together.
The person with a disabilityand his or her supporter can use
the sample supporteddecision-making agreement found
in section 1357.056A of theTexas Estates Code, or any form
consistent with that one.
I'll post a link to a versionof that form in the show notes
(15:34):
so that you can take a look atthat and download it if it's
something that you're interestedin.
Filling out the form does notrequire going to court, having
an attorney or paying a fee.
For the agreement to be valid,it needs to be witnessed by two
people over the age of 14 or anoted republic.
On the supporteddecision-making agreement,
people with disabilities canspecify what kind of decisions
(15:56):
they want help making andwhether they want their
supporters to be able to accesstheir private health and
education records.
A person with a disability canhave multiple supporters to help
with different kinds ofdecisions.
The individual will just needto fill out a separate form with
each supporter.
The person with a disability orthe supporter can keep the
original form, and copies can beprovided to professionals who
(16:16):
work with the individual, suchas doctors, teachers, service
providers and others.
According to the law, people whoreceive a copy of the supported
decision-making agreementcannot be held to criminal or
civil liability or professionalmisconduct, as long as they act
in good faith to what is in theagreement.
Having a supporteddecision-making agreement does
(16:36):
not guarantee that someone canprovide informed consent.
The person with a disabilitystill needs to demonstrate that
he or she has the capacity tomake a particular decision.
The supporter's role is to helpthe person with a disability to
understand and communicate whatis needed to provide informed
consent.
Under Texas law, a supporteddecision-making agreement
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creates a fiduciary relationshipbetween the supporter and a
person with a disability.
This fiduciary duty requiresthe supporter to act loyally, in
good faith and withoutself-interest.
The supporter must also avoidconflicts of interest.
A supporter could be heldliable for violating these
duties.
Through supporteddecision-making, an adult with a
(17:17):
disability can authorize his orher supporter to help him or
her access confidentialinformation.
This includes things likemedical and school records.
While the agreement mayauthorize the supporter to
assist with obtaining records.
The adult with a disabilitywill need to fill out an
authorization to releaseconfidential information form.
The supporter must make surethe information obtained is kept
(17:39):
confidential and is only usedto support the adult with a
disability.
The person with a disabilitycan also get confidential
information on his or her ownwithout the assistance of the
supporter.
Here are the four reasons.
A supported decision-makingagreement can end the adult with
a disability or the supportercan choose to end the agreement
at any time.
The adult with a disability andthe supporter can put a
(18:02):
termination date on thesupported decision-making
agreement.
The agreement endsautomatically if the Department
of Family and ProtectiveServices finds that the
supporter has abused, neglectedor exploited the adult with a
disability.
The agreement endsautomatically if the supporter
is found criminally liable forthe abuse, neglect or
exploitation of the individualwith a disability.
(18:24):
Supported decision-making canbe used along with other
alternatives to guardianship.
For example, an adult with adisability may need a
representative payee for SSI, aspecial needs trust to protect
assets and to help plan for thefuture, or a medical power of
attorney for medical decisionsif he or she becomes
(18:44):
incapacitated, while having asupported decision-making
agreement to get support withother kinds of decision-making.
It is important to remember thatthere is no one-size-fits-all
alternatives to guardianship.
The key is to take aperson-centered approach so that
the adult with a disability canchoose alternatives to
guardianship that provide thesupport they need to help them
(19:06):
reach their goals.
If a person who receives or isaware of a supported
decision-making agreement hasreason to believe that the
supporter is abusing, neglectingor exploiting the adult with a
disability, the person mustreport this information.
So now let me go over thesupported decision-making
agreement and what that lookslike.
It's a two-page form oractually just one page if you do
(19:29):
front and back and it says thisagreement is governed by the
Supported Decision-Making Act,chapter 1357 of the Texas Estate
Code.
This supported decision-makingagreement is to support and
accommodate an individual with adisability to make life
decisions, including decisionsrelated to where and with whom
the individual wants to live,the services, supports and
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medical care the individualwants to receive, and where the
individual wants to work,without impeding the
self-determination of theindividual with a disability.
This agreement may be revokedby the individual with a
disability or his or hersupporter at any time If either
the individual with a disabilityor his or her supporter has any
questions about the agreement,he or she should speak with a
(20:14):
lawyer before signing thesupported decision-making
agreement.
And then it says I the name ofthe adult with a disability is
written in am entering into thisagreement and voluntarily
choose they enter the name ofthe supporter to be my supporter
.
The supporter's address islisted, their phone number and
their email address.
My supporter may help me withlife decisions about and then
(20:37):
there's an option to choose yesor no for each of these
categories Obtaining food,clothing and a place to live, my
physical health, my mentalhealth, managing my money or
property, getting an educationor other training, choosing and
maintaining my services andsupports finding a job.
(20:58):
Other.
My supporter does not makedecisions for me.
To help me make decisions, mysupporter may help me get the
information I need to makemedical, psychological,
financial or educational choices, help me understand my choices
so I can make the best choicefor me, or help me communicate
(21:19):
my decision to the right people.
Yes or no, my supporter may seemy private health information
under the Health InsuranceSupportability and
Accountability Act of 1996.
I will provide a signed release.
Yes or no?
My supporter may see myeducational records under the
Family Educational Rights andPrivacy Act of 1974.
(21:39):
I will provide a signed release.
This agreement starts whensigned and will continue until
and there's a space to put adate or until my supporter and I
end the agreement or theagreement ends by law.
Sign this day, you put themonth and the year.
The adult with the disabilitysigns and the printed name of
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the adult with the disability islisted there.
It says important informationfor supporters when you agree to
provide support to an adultwith a disability under the
supported decision-makingagreement, you have a duty to
one act in good faith.
Two, act loyally and withoutself-interest and three, avoid
conflicts of interest.
Then on the back it's theconsent of the supporter.
(22:24):
So the supporter lists his orher name, says consents to act
as a supporter under thisagreement.
The supporter signs their nameand prints it.
This agreement must be signedin front of two witnesses and
there's a space for twowitnesses to sign, or a notary
public and there's a spot forthe notary public to sign, and
that's it.
That's all that's involved insupported decision-making.
(22:46):
So those are the two majoroptions guardianship or
supported decision-making.
I might, at a later date, gointo depth on some of those
other alternatives toguardianship that I mentioned
earlier.
It just depends on how lengthy.
I haven't read through all ofthose, so it depends how lengthy
those are, but again, I willput the link below to all this
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information that you candownload online and you can read
over it so that you can makethe best decision for your
family.
You know, having a child with adisability changes everything.
It makes life just a littlemore.
Just a little more, I guess, isthe best way to say that.
And when it comes todetermining the future for your
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young adult with a disability, Ithink it requires a lot more.
So you owe it to yourself, youowe it to your young adult, you
owe it to your family to makethe best educated choice that
you can, and I hope thisinformation has been helpful.
Thanks for listening to theEmbrace the Blessing podcast.
Visit embracetheblessingcomslash podcast for show notes and
(23:50):
links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
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