Guardianship is Not Your Only Option: Supported Decision-Making On-Demand Webinar

- 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