is guardianship the only option - university...
TRANSCRIPT
Supported Decision-Making Is Guardianship the Only Option?
Dana W. Traynham
VA Office for Protection and Advocacy [email protected]
Dana Yarbrough Partnership for People with Disabilities [email protected]
The freedom to make decisions – to be
self-determined –
plays an important role in defining all of us as human beings and
Americans, and determining our quality of life.
What we’ll talk about today…
Capacity
Guardianship
Alternatives to Guardianship
Ways I will support an individual’s
self-determination
How do we get families to think about
ways they will support an individual’s
self-determination?
Develop a one page profile
Use a tool like the Missouri checklist
Learn about options in their state
But first…
Brooke
Me
My name is Brooke.
I live in Virginia with my mom and dad.
I go to Varina High School.
I want to own a doggie day care when I graduate high school
My strengths and talents
I can occupy myself for long periods of time
I pay attention
I am physically strong
Words that describe me best
Always cheerful
Inquisitive
Funny
Cute
My favorite things
My favorite foods are chicken nuggets, potatoes and peanut butter crackers - and sweet iced tea
I like riding in the car with the window open blowing my hair
I love the sound of shaking a bottle of water
I like listening to music (pop, rock and rap)
I love going to Florida to visit my grandparents
My Worst Possible Day
Sitting at home all day with nothing to do
Not getting enough to eat or drink
Being ignored - especially when I use my body to "talk"
Having surgery
My fears and worries / Things I don't like
Sudden noises
When I don't know what's going to happen next
Angry, loud voices
Being ignored
Bright sun or lights in my eyes
Not having my dog (she died)
An Ideal Day
A big breakfast with OJ
Going to school
Quiet time throughout the day
Eating every couple of hours
Lots to drink
Sitting with friends in class or lunch
Chillin' in my room
Playing or shopping with my mom and dad
What you can do to help me
Pour drinks in my cup
Put food on a fork for me
Help me to the bathroom, get dressed
Help me at school "talk" to classmates
Help me understand and do activities
Push my wheelchair
Give me clear and simple one-step directions
Hold things close to me so I can see them
Person-Centered Approaches
Dreams
RELATIONSHIPS Partners, Family
Friends, Neighbors, Co-worker
RESOURCES Money, Places to go
Transportation, Tools, Supports
Services, Personal space
VALUES Influence, Social roles
Competencies, Support to others,
Productivity
HOW TIME SPENT Work, Play Learning,
With others, Alone
HOME Type of Home,
Location, Environment Roommate, Ownership
HEALTH Physical, Emotional,
Spiritual
Relationship Mapping
ME my school, church, mosque, synagogue, neighbors, local shops
my friends and non paid relationships
my paid supporters, day services
my family
Take a Picture of Yourself Think about your positive and not so positive features. Now, in the left hand column, list several of your most positive features. In the right column, list several things that you consider to be qualities that are not so positive.
My Positive Qualities My Not So Positive Qualities
Good Day/Bad Day
Important to Important for
Sorting Important To and Important For
Important to Important for
(When words and behavior are in conflict, listen to the behavior)
© The Learning Community for Person Centered Practices, Inc. 2008
Today I am 17
Who is my guardian?
Who makes health care decisions for me?
Do I have capacity to make my own decisions?
Today I am 18
Who is my guardian?
Who makes health care decisions for me?
Do I have capacity to make my own decisions?
What happened overnight??
Today I am an 18-year-old with an Intellectual Disability
Who is my guardian?
Who makes health care decisions for me?
Do I have capacity to make my own decisions?
How are my legal rights different from an 18-year-old without an intellectual disability?
Do I need a guardian?
Capacity
The ability to: take in information; make an informed decision; and communicate your decision.
Capacity is
Presumed
Capacity
Capacity is fluid: time and circumstance different levels needed capacity needed for an advance directive?
Capacity
Must specify whether person lacks capacity to make:
a particular health care decision a specified set of health care decisions all health care decisions
Guardianship
Court decides capacity
Court order
Often confused with Power of Attorney
Limited or complete
“Conservator” is appointed by court to make financial decisions
Why not skip alternatives and go straight for guardianship?
Guardianship: takes away basic rights is the most restrictive choice involves stigma because the person is declared incompetent is expensive is often unnecessary is usually permanent
Once declared incompetent, you lose the right to:
Make treatment decisions
Marry and divorce Enter contracts Revoke a will Possess a firearm
Decide how your money is spent (conservatorship)
Decide where you live Vote
Make a will or advance directive Drive Buy, sell or rent property
Is guardianship a bad thing?
No. Guardianship may be necessary and appropriate in some situations.
For a person who: has never had capacity and will probably
never gain capacity is facing a major decision for which he lacks
capacity (limited guardianship should always be considered)
Why are alternatives any better?
They are: inexpensive easy to revoke or change person-centered and allow the person to make his or her own decisions whenever possible often done without an attorney simple (“legalese” not necessary!)
Alternatives to Guardianship
Examples include: Advance Directives Authorized Representative Payee Release of Information Limited or Joint Accounts
Advance Directives
Instructions about end of life care: Living Will Naming an alternate decision maker: Power of Attorney
Medical decisions other than end of life:
Medical Directive
Advance Directives
An advance directive is easy to revoke. Prior AD is automatically revoked when you write a new one Tear up all copies Notify everyone who received a copy Oral versus written revocation New law says you must “understand the nature and consequences of your action”
Power of Attorney
Types: Health Care Financial Durable Springing
Power of Attorney
Things to consider when choosing an agent:
complete trust willingness availability alternate or co-agent beliefs and values conflict of interest
Power of Attorney
Specific or General Limitations
end of life decisions? visitation? organ or tissue donation? admission to psychiatric facility? treatment over protest? medical research?
Power of Attorney
Signing No attorney
necessary (but recommended)
Two witnesses Notary is optional
in many states (but recommended)
Provide copies to the following:
agent doctors local hospital school state registry (when available) family members and others
Remember who you gave copies to
But I haven’t done any of these things yet…
Health Care Decisions Act
Authorized Representative
Court-ordered Treatment
Guardianship
Health Care Decisions Act
Alternate decision makers are chosen in the following order:
guardian spouse adult child parent adult sibling any other relative of the patient in the descending order of blood relationship
What about financial decisions?
Representative Payee
Trust Fund
Direct Deposit
Automatic Bill Paying Program
Joint Accounts & Joint Property
Everyone is presumed competent to make choices about their lives.
Just because a person has a disability is not reason to assume the person
cannot make decisions.
Sometimes, because of limited intellectual or communication
skills, a person may simply need some help with making decisions