- Hi, my name's Dustin Rynders.
I'm the Supervising Attorney of the Education Team
at Disability Rights Texas
and I'm happy to be with you today, talking about
guardianship and more importantly,
your other alternatives to guardianship,
including supported decision-making.
Any conversation about alternatives to guardianship
and supported decision-making in the U.S.
should start with a little bit of history.
And for us, that's the history
of a woman named Jenny Hatch,
who was the first person to
have a court case where she won the right to use
supported decision-making instead of a full guardianship
to make decisions for herself.
Let's listen to Jenny in her own words.
- [Man On Video] Jenny, what do you want to tell people
about the Jenny Hatch Justice Project?
- I just want to let you know that I am here
to help people with disabilities and special needs
and this is going to be the Jenny Hatch Center
that I always love.
- Jenny was an individual who
was living at first, in a group home.
She began working at a thrift store that she loved
over time, she wanted the right to live independently
with people who she met through through work.
And her parents at first were a little uncomfortable
with that, ended up filing for guardianship,
and then with help from the peoples...
for the Quality Trust for individuals with disabilities,
Jenny was able to fight for her right
to continue making her own decisions about where she lived,
and who she spent her time with, and whether she worked.
So why is it important for people
to make their own decisions?
You know, one thing to keep in mind is that making decisions
for yourself is a learned skill and people with disabilities
can learn too.
And so, we all learn to make better decisions
by having the opportunity to make mistakes.
And so, if we take away the right for people
to make decisions for themselves, we're also taking away
the opportunity for them to learn decision-making skills.
You know, making your own decision also promotes
responsibility and self-determination.
It makes people healthier and better prepared
to recognize and resist abuse.
You know, at first, that may not make sense,
but really, you know, when a person gets to a place
where others are always making decisions for them,
which is something that was common
in the disability community for many years.
There was an assumption that people, especially
with intellectual disabilities needed
to live in institutions.
And what is an institutional life?
It's a life where others make all your decisions for you.
Right?
On what you're going to eat
and what you're going to do during the day.
And so when people begin to make more and more decisions
for themselves, they're better able to recognize
that it doesn't feel right when someone tries
to take those decisions away from them.
You know, when others make decisions for someone,
that person over time can develop low self-esteem
and have more difficulty functioning.
They may decide not to even try as much.
So, some of the things to keep in mind about guardianship,
there are a lot of disadvantages to guardianship.
Guardianship is expensive and it's a lot of work.
It can be difficult to terminate or modify.
It requires a court order, which requires often
the expense of getting an attorney
to both establish the guardianship
and then ongoing court oversight.
Some people, when they file for guardianship,
don't immediately understand that they have to file
an annual report on how the person is doing
with the court every single year.
It also removes the person's self-determination
and their decision-making rights
and gives most decisions to another person,
who we call the guardian.
The guardian becomes responsible
for all the decision-making.
So, we have an opportunity now to hear from our friend,
Ricky Broussard, who's an important self-advocate here
in Texas and just disability rights advocate and friend.
So, we're going to hear for Ricky about how
supported decision-making has helped him in his life.
- [Narrator] What is supported decision-making?
A message from Disability Rights Texas.
- Hello, my name is Ricky Broussard
and I'm at Disability Rights Texas.
I'm here to talk to you today
about supported decision-making.
- [Narrator] Supported decision-making is a way for people
with disabilities to keep our rights
and make our own choices with help from others
instead of having a guardian who makes decisions for us.
Guardianship.
- People say guardians make it easier, but once you have
a guardian, that guardian has control over you.
A guardian is decided by a judge
and you do not have control over any important decisions
that you need to make.
It shouldn't be that way.
Because it's about the individual's life,
it's not about their life.
- [Narrator] Under guardianship, you can lose the right
to choose where you live, how you spend your money,
who your spend your time with,
and other important decisions.
Supported decision-making.
- Supported decision-making.
It's all about the individual.
It helps us make
the right decision for ourself
and our life.
If you need help making decisions,
choose someone that you trust.
It doesn't have to be a family member,
it could be somebody at school you trust
or somebody at work you trust.
After you choose somebody to support you,
you tell them what you need support on
and how they can help you.
Some of the things that your supporter can help you do
is going to the grocery store or make medical decisions
or with where you live or they could help
over your finances.
In my support team, I let everybody know,
okay, this is what I need decision on
and this is what I need you to help me with.
After I hear the pros and cons
of the decision,
that's when I make the final decision
on whatever choice I make.
We all need help to make decisions.
We have to make decisions every day.
Your rights should not be taken away
just because you need help.
- [Narrator] To learn more, ask for the free book
called "Making My Own Choices," by calling 512-454-4816
or toll free at 800-252-9108
or by video phone, toll free at 866-362-2851
or by visiting www.DRTx.org/Choices.
This video was brought to you by Disability Rights Texas.
Find us on the web at www.DRTx.org.
- I love watching Ricky talk about
how we all make decisions.
You know, when we talk about decision-making options
for people with disabilities, it's easy for us
to forget that those of us without disabilities
also need help making decisions.
You know, at the age of 18,
I didn't have all the challenges of a person
with an intellectual disability,
but I still ended up calling my mom and dad
for advice and help with
many different decisions as most other people do as well.
And so there's everything is completely normal
about the basic underlying principle
of supported decision-making, which is just
when you're having trouble making a decision
or you need a little help, you can pick a person you trust
to help you make that decision.
We think about supported decision-making,
it's just what Ricky was describing.
Someone who helps you weigh the pros and cons
of making your decision,
but there are other alternatives to guardianship as well.
So here are our kind of a list
of main alternatives to guardianship.
So a Medical Power of Attorney.
This is a document where a person indicates
who they want to be able to make
a medical decision for them.
With a Power of Attorney, they can actually
make that decision, even if the person isn't, you know,
even if they were incapacitated at that time
and couldn't make the decision for themself anymore.
Now, it is important though,
for a person to be able to understand
that they're giving someone else the ability
to make decisions about medical issues for them.
Second, a Durable Power of Attorney.
A Durable Power of Attorney is the power of attorney
for everything else that's not medical.
So there's a list of things on a Durable Power of Attorney,
and you can choose one or you can choose all of them,
but it allows you to make educational decisions for someone.
You know, I work with a lot of families who
have special education meetings.
Sometimes the adult students still want their parents
to be involved and help make decisions after the age of 18.
A Power of Attorney is a way to accomplish that goal.
Again, as long as the young adult is able to say,
"Yes, I want my mom to make these decisions for me,"
and then sign the Power of Attorney.
So a Declaration of Mental Health Treatment
is just a document that allows someone
when they're doing well to make decisions for what kind
of mental health treatment that they would or wouldn't want,
should they be doing not as well in the future.
A Representative Payee, this is for social security.
And so, a lot of people who are considering guardianship,
the adult will end up receiving SSI payments
and the Social Security Administration can designate
another individual as the Representative Payee
who is then responsible for managing the individual's money
to take care of that person.
And so that's an alternative to guardianship
because you don't have to obtain a guardianship
to be able to receive and manage a person's
social security funds.
Now, for families who are fortunate enough
to have additional funds that they plan to use to support
an individual with a disability,
there are a couple other alternatives.
There are ABLE Accounts and Special Needs Trusts.
So these are really only required when a family expects
to be able to save money, that they want to protect
that money in a way that the person
keeps their Medicaid eligibility
and keeps their other disability-related benefits.
So if you put any savings that are going to be used
for an individual with a disability
in one of these accounts, then it keeps that person
eligible for Medicaid and eligible
for other important disability services.
So ABLE Accounts are just bank savings accounts,
especially for providing for the needs
of a person with a disability, that Congress created these
to make it easier for people to save a amounts of money,
up to about $100,000.
There's some higher amounts, but they come with more rules.
So for most people, this is a good alternative
to a Special Needs Trust if you're gonna be able to save
up to or less than $100,000.
Then you can just go to a bank and much like starting
a college savings account, you can start and ABLE account.
And no court has to be involved.
For families who are planning to be able to save
a little more money than $100,000
for individuals with disabilities,
then a Special Needs Trust is an important alternative
to guardianship, and that does usually require
hiring a lawyer to create the Special Needs Trust
and to designate a trustee to manage
that individual's money.
The important thing to keep in mind here
is that a lot of families think that they need guardianship
just for money management.
But money management is actually one of the easiest things
to accomplish for many individuals without a guardianship
because you can use the Representative Payees,
the ABLE Accounts, and the Special Needs Trusts.
Also, joint bank accounts and,
you know, at first, some people get confused about, well,
how is that an alternative to guardianship?
But you know, a good friend of mine,
his main need for support was in managing money.
And the way he received his support is he chose
a good friend to be on his bank accounts with him.
And they created a rule that when he got paid,
his money would go into his savings account.
That individual would help him pay bills,
and then they would leave about $40 in the checking account
and he would have a debit card.
But he knew that if he wanted to spend close to $40
or any more that he needed to check in with his friend
who helped him manage his money and have a conversation.
And the purpose of that conversation wasn't
for that individual to say,
"Oh, yes, you can do that," or,
"No, you can't do that."
It was just to help him weigh,
you know, the decision.
So I remember being with him one time
and he wanted to purchase--
and it was a number of years back--
so it was an iPod.
And so, he called that friend and that friend said,
"Well, you do have that amount of money
"in your savings account so I can move it over if you like,
"but you had also mentioned wanting to go to this event
"this weekend that's going to cost
"a good amount of money, too.
"It looks like you can only afford one or the other,
"which do you prefer?"
And, you know what...
the reason I like to take the time to give that example
is it just shows what supported decision-making
is all about.
It's about helping a person weigh their options,
but not make a decision for them.
And so, a joint bank account is one way you can do that.
Because in their arrangement, if he had decided,
"Well, yes, I want the iPod,"
she would have just moved the amount of money
it would cost into the checking account
where he could easily access it with his debit card.
So the supported decision-making agreements.
You know, this is what we have now in Texas.
We have a form created by a law
that allows us to communicate to people,
"Hey, I want to be supported in my decisions
"and have this particular individual support me."
In a way, it makes formal what people with disabilities
have been doing for many, many years,
which is to receive informal support from their friends
in making decisions.
So, a Power of Attorney, those first two we talked about,
it's a legal agreement, someone else helps the person
make a decision, but what's different here
is it actually allows someone to make a decision
for a person.
It doesn't take away the person's ability
to make a decision for themself,
but someone else can actually take the Power of Attorney
and make a decision for someone,
even if they're not with them.
And so it is different than supported decision-making
in that way.
And it allows
in areas where a person is no longer okay,
make the decision for themselves.
So for example, some people, even as they're getting older,
might choose to sign a Power of Attorney,
knowing that at some point, they won't be able
to make decisions for themselves anymore.
So they want to give that ability
to maybe their son or daughter, for example.
So, how is the Supported Decision-Making Agreement
different than a Power of Attorney?
You know, both let other people help you with decisions,
but in a Supported Decision-Making Agreement,
the supporter helps make decisions,
but the individual themself, the individual
with the disability makes the final decision.
In a Power of Attorney, the person makes decisions
for another person when that person no longer
can make them for themselves or if they're not available.
And an individual can have both agreements.
And so very often, we see young adults
who want a parent or a friend to help them
with Supported Decision-Making Agreements,
but also may sign a Power of Attorney,
knowing that there may be times that they're not available
or if they feel comfortable with someone
making a particular decision for them as well.
So now we're going to hear about a situation
of a mom and a young adult daughter
who made that decision to use supported decision-making
instead of guardianship
as their daughter turned 18.
- It was important that I raised
both of my girls to make decisions and live independently.
But I think right now, Timberly needs
a little bit added, extra support.
It would be easier to make decisions for her,
but that's just not the right thing to do.
- My mom thought about guardianship but then she was
searching and searching and then she finally found
Supported Decision-Making Agreement and that was
a good choice to make.
- [Narrator] Disability Rights Texas presents
Supported Decision-Making
For Young Adults With Disabilities.
- My name is Tonya Mouat
and I'm originally from the Dallas-Fort Worth area.
Timberly has what's called velo-cardio-facial syndrome.
It's also called 22-Q.
My goal was for Timberly
to be independent, regardless
of whether she has a disability or not.
- I'm Timberly Mouat, I'm 18, I go to Brendeis High School.
I'm graduating this year.
And I really like animation.
I wanna go to the Walt Disney Company
and be an animator for them.
That's always been my dream job.
- [Narrator] Often, when students with disabilities turn 18,
school districts and parents lean towards guardianship
because they think that is the only option they have.
- The only paperwork I got from the school system
was on guardianship.
They handed me a couple of pieces of paper
and the information on guardianship was one.
Once you obtain the powers of guardianship,
you lose all right to marry, you lose the right to vote,
you lose the right to enter a contract,
you lose the right to drive a car.
You don't want mom having that power over you
to make those decisions.
To read the information on guardianship
deflated me.
When you listen to what
the terms of guardianship are,
you're stripping away the rights of that person.
- [Narrator] With supported decision-making,
the young person with a disability maintains her right
to make choices and select someone she knows and trusts
to help her.
Both people complete and sign an agreement form.
- We do have
the Supported Decision-Making contract in place.
It has worked very well.
We've been utilizing it for, I guess,
four months now.
We work really well together, always have.
- My mom's always been there for me.
She has helped me make decisions through all my high school.
She helped me with
what classes to take, like with algebra.
I wanted to take it this year to get ready for college
and then she helped me make decisions on that
then she helped me through it.
- Throughout Timberly's life,
I've encouraged her to have a voice
in her opinion.
I tell her constantly that she has a right
to speak up and she has a right to be heard.
- It helps me because I have a mom on my side always,
if I don't want to, I can say no.
It's better than guardianship.
- [Narrator] If you are interested in finding out more
about alternatives to guardianship,
including how to create
a Supported Decision-Making agreement, visit SDM.DRTx.org.
Or if you would like assistance
in creating a Supported Decision-Making Agreement,
call Disability Rights Texas at 1-800-252-9108.
Financial support for this video is provided by
the Texas Council for Developmental Disabilities
with federal funds made available
by the U.S. Department of Health and Human Services
Administration on Intellectual
and Developmental Disabilities.
The views contained herein do not necessarily reflect
the position or policy of the funding agencies.
- So who can enter a Supported Decision-Making Agreement?
You know, these agreements are designed
for people with disabilities to be able to understand
and communicate that they want help with decisions.
And they're really designed for adults.
And so, you have to be at least 18 before you sign
the agreement and you have to be able to understand it.
in what I would say, functional terms,
what it means to sign that agreement.
And so, that's basically saying
that I want my mom or my friend
to help me with decisions at the doctor,
and at the bank, or in other places
And who can be a supporter?
It's any adult.
And so, it could be a parent, or another family member,
or it can be a friend.
It can actually be a professional service provider as well,
which can be an important support
for some people who don't have families
or other friends to choose.
The important thing is that it's the choice
is the person with the disability to choose
who is their supporter.
And what can a supporter do and what can they not do?
So, a supporter can assist people
in understanding their options,
their responsibilities and consequences,
assist in accessing important records.
So the agreement itself doesn't give the supporter
the ability to request records on their own,
but they can help the person with the disability
request their own records.
It can allow them to assist in communicating a decision
to other people, especially for example,
as someone who may have a communication disorder
of some type.
Now, it doesn't allow--
a Supported Decision-Making Agreement
does not allow someone to make decisions for the person
with the disability.
It's still ultimately that person with a disability
who makes decisions for themself.
So they can't, you know, obtain records without
that person's consent.
And obviously, they can't abuse or take advantage
of a person with a disability.
And any such conduct should always be reported.
So now we're gonna hear from another daughter and mom
who also use Supported Decision-Making,
Dawn and Belinda.
- Dawn was determined that she wanted to be independent.
Guardianship would've meant that she
would not have that opportunity.
I knew that that was not going to work for her.
I wanted her to be able to live her life.
That's why Supported Decision-Making was really important.
- [Narrator] Disability Rights Texas presents
Supported Decision-Making For Adults with Disabilities.
- My name is Dawn Carlton, I am 39 years old.
I live in Austin, Texas.
I'm very independent and I
enjoy having the freedom to be independent.
- [Narrator] Supported Decision-Making is a way
of helping a person with a disability
make their own choices.
A person can select someone in their life
that they know and trust to help them make decisions.
- Hi, my name is Belinda Carlton.
I live in Dale, Texas with my husband
and a huge dog named Henry.
I've been helping Dawn make decisions for a long time.
Dawn is 39 now and has been
living on her own for several years.
- I ask my mom for help
on medical decisions,
going to the doctor if I
need her to go with me.
She helps me read the mail or
questions that I need answered.
- If there's something to do, does she understand
what she needs to do?
There's a deadline, that sort of thing.
- [Narrator] In 2015, Texas became the first state
to pass a law recognizing supported decision-making
as an alternative to guardianship.
The new law also requires that the court consider
all possible alternatives to guardianship first.
- Well that's right, you have scoliosis
but it was that you had a...
- Herniated disc.
- A herniated disc.
That's right.
And you kept saying the pain...
- Was unbearable.
- So you wanted to go ahead and go see a neurosurgeon.
What did I keep telling you?
That you had the right to change your mind?
- Yes.
I had the right to change my mind.
- And you did it.
- Yes.
- It's her life
and her decision.
- [Narrator] Guardianship not only takes away
a person's right to make everyday choices,
it removes other important rights,
like the right to vote, drive, and get married.
- Guardianship would take away,
it would take away her right to vote,
her right to get married.
And she's done all those things.
So.
That's a good reason for why not guardianship.
Those basic rights that we all want to enjoy.
- My independence is important because
if you are out on your own you could, you know,
just basically be free.
- Just because she has a disability, just because she's
has a label of intellectual disability,
doesn't mean that she cannot make her own decisions.
- [Narrator] If you are interested in finding out more
about alternatives to guardianship, including how to create
a Supported Decision-Making Agreement,
visit SDM.DRTx.org.
Or if you would like assistance in creating
a Supported Decision-Making Agreement,
call Disability Rights Texas at 1-800-252-9108.
Financial support for this video is provided by
the Texas Council for Developmental Disabilities
with federal funds made available by
the U.S. Department of Health and Human Services
Administration on Intellectual
and Developmental Disabilities.
The views contained herein do not necessarily
reflect the position or policy of the funding agencies.
- So, one of the most common questions that I receive
when I give this presentation is, you know,
if people want to talk about their own child
for good reasons.
And some people ask questions about,
"You know, what if my son or daughter
"doesn't make good decisions?"
And really, with respect to making good decisions,
I think it's important to know that
it is a learned skill that we all learn by making mistakes
and that guardianship alone
doesn't change behaviors.
Many of the decisions that people make
are behavioral decisions of
am I gonna try to run away?
Or am I gonna, you know, things that are behaviors.
Guardianship doesn't change a behavior,
but another line of questions is
what if my son or daughter or the person I'm worried about
can't communicate that she wants help with a decision?
And so, if a person can't communicate
that they want help with decisions,
then they're not going to be able to sign
a Supported Decision-Making Agreement
or a Power of Attorney.
Now, when I say communicate, I don't mean
that they're able to,
you know,
to explain in legal terms what these things mean,
but they at least need to be able,
out of basic...
in a basic way to understand and communicate
that they want help with decisions at the bank,
at the doctor, and other places.
You know, if they understand that,
then I believe they should be able to complete
these documents and use these alternatives to guardianships.
Now, if you do have someone you're worried about
who is not able to communicate that they want help
with decisions, then that person can still use
some other alternatives to guardianship.
They can still have you appointed as a Representative Payee
to manage their social security,
you can still save money on that person's behalf
in an ABLE Account, protecting that money,
protecting their Medicaid benefits,
and you can still save money on their behalf
in a Special Needs Trust without taking away
any rights from that person in a guardianship proceeding.
The tougher issue for such individuals
who aren't able to communicate that they want help
with decisions is that if they
need non-emergency medical care at some point,
the doctor will likely
need consent to provide that service.
Doctors really vary in
how they feel about
whether they can get enough consent from a person
to provide a service and talk to the individual's doctors,
and decide if you may need a limited guardianship
just for medical decisions.
It's important that if you do go down that route,
that you keep the guardianship as limited as possible.
At least keep the right to vote and think through
every single right you might be taking away and think,
"Is there really a reason to take this right away?"
Do people have to follow
Supported Decision-Making Agreements?
The truth is that Texas law encourages businesses
to follow the agreements.
Doctors and other professionals
can't be sued or held responsible.
They can't be disciplined by their professions
if they're relying on agreement in good faith.
And, you know, I've given this presentation
to doctors before and they love that
because there have always been a lot of individuals
with intellectual disabilities who don't have guardians.
That's nothing new.
And doctors sometimes kinda want an insurance policy
in feeling like they're able to honor
that person's decisions
to make decisions for themselves.
And they feel like the protection given to them
allows them to use these
Supported Decision-Making Agreements and allow friends
and family members to assist people in making decisions
for themselves and for them relying on it.
You know, also allowing someone support
is a reasonable accommodation as well.
Ever since this law was passed,
our office has really been on the forefront
of promoting these agreements, and training people
about them, and helping families execute the agreements
and we have received very few complaints
of people having any trouble.
The reality is that most businesses
want to allow people to receive help when they need it
and people just understand that adults with disabilities
are going to need support and should be allowed
to have someone help them with the decisions
when it's needed.
So, if you need help,
executing a Supported Decision-Making Agreement
or need more information on other alternatives
to guardianship, visit our website
at DRTx.org and then go to /SDM
for Supported Decision-Making.
We have a comprehensive Supported Decision-Making toolkit
that has the forms that you can complete on your own.
We also are happy to offer assistance for people
who need help getting those forms signed
and filled out.
And so, feel free to request our services if you need.
Our statewide intake line for Disability Rights Texas
is 1-800-252-9108.
And you can also always do an intake on our website
at DisabilityRightsTexas.org.
And we have a sign language video phone
and a Purple 2 video phone that's numbers
are on the screen.
Thank you for listening today.