APRIL 5, 2010
VCU
PEATC WEBCAST

Services Provided By:  Caption First, Inc.

   >>  Hi, and welcome.  Thanks for joining us today.  I'm 
Cathy Healy, with PEATC's next steps transition training 
program.  We are here at VCU RRTC and partnership funded by a 
grant from the U.S. Department of Education Rehabilitation 
Services Administration. 
   We have dedicated a series of webinars to topics related to 
transition for secondary students with disabilities and 
families. 
   PEATC has been around for about 30 years.  We are the 
Virginia parent training and information center.  We field 
inquiries from families and professionals from all around the 
state, and we invite your questions as well.  We can help you 
with topics related to special education and general 
education, and generally how to cultivate a good support 
system for your young person with a disability. 
   You can reach us by phone, in the Commonwealth for parents, 
800-869-6782, or locally at 703-923-0010. 
   We invite you to visit our Website, www.peatc.org, where you 
will find information about the other webinar topics in this 
series. 
   We are offering CEUs and CRCs to professionals, and for 
parents we will issue a parent certificate of training to you 
as well. 
   Today, we hope that you will enjoy the presentation, and 
that you will at the end of it fill out a short evaluation.  
And if you would like to participate in a web board discussion 
with the presenter, we invite you to stay tuned for that as 
well. 
   In Virginia, and in other states across the nation, when 
students reach the age of majority, they must be apprised of 
their rights as adults.  And so many school districts are 
talking to families now about gaining guardianship for their 
young people, which we believe it may be the right thing for 
some families, but it may not be the best choice for all of 
our young people.  And today, we wanted to have a kind of 
thoughtful discussion about the things that a family should 
consider before they entertain a full guardianship for a young 
person with a disability. 
   It was very sad to us recently when we heard from a parent 
who had taken guardianship for her child to find that the 
child who wanted to vote in one of the national elections was 
barred from voting, because she had lost her right to vote, 
which is what the guardianship had done. 
   This mother, this parent was really upset about that, and 
didn't know what she was doing when she had signed on for 
guardianship.  It may be that in this young person's case, it 
might be the appropriate step.  But there are lots of options, 
and parents and family members really should know about those 
options before they launch into this very severe and very 
significant part of a person's life. 
   We have invited Sue Swenson to come and share some ideas 
with us, for us all to talk about it in a different way, think 
about it in an intelligent way, so that we can make the best 
decision with our loved ones. 
   Sue is the former commissioner for the administration on 
developmental disabilities under the Clinton administration.  
She is a former public policy Kennedy fellow.  She is the 
former executive director of the U.S. ARC, and she is with us 
today to provide insight.  She is an internationally renowned 
speaker.  She is a terrific intelligent spokesperson.  She is 
a mom, and she is a good friend of mine.  So we are very very 
happy to have her here today, to help us understand some of 
these issues and steps that we can take to best support our 
young persons with disabilities. 
   Please help me in welcoming Sue Swenson.  Thank you.  Sue? 
   
   >> SUE SWENSON:  Thank you, Cathy.  Hi, everybody.  I'm 
going to talk to you a little bit today about guardianship and 
decision support, mostly alternative to guardianship, other 
ways to think about it, basically how we think as parents 
about rights and risks and responsibilities. 
   First I want to be really clear that I am not a lawyer.  
Nothing that I'm saying to you today can in any way be 
construed as legal advice.  I want to point out that a lot of 
informational resources on the web, if you search decision 
support, supported decision-making, person centered planning, 
you will find a tremendous amount of information. 
   I want to also remind you that other parents are a source of 
wisdom.  I think the best way that we can as parents walk our 
way through this stuff is have a friend who is somebody we 
trust, who knows us, who knows our life, and really talks 
issues over with them.  Maybe our decisions will be different 
from their decisions, but it is useful to have the opportunity 
to think through what are the impacts of what we are thinking 
about.  My E-mail is Sue.Swenson@gmail.com, if you need to 
contact me for any reason. 
   The struggle for rights for people with disabilities has 
been as you know a very long process.  I'm not going to go 
into it in depth.  I want to point out to you that in the last 
100 years, essentially, we have gone from the focus on 
deficit, different, deviants, to a focus on eugenics and 
trying to get rid of people with disabilities, to a focus on 
institutionalization and segregation, then to normalization, 
and from normalization to a program and plan and readiness, 
and now we are working hard on equality and inclusion.  That 
is the platform I'm going to be speaking to you today from, a 
platform of equality and inclusion.  What can we do to ensure 
that our sons and daughters enjoy as much equality and 
inclusion as we can possibly manage? 
   Paralleling this change, we see a change in the rights of 
people with disabilities, and what the movement has been.  The 
human rights movement after the second world war was a 
significant piece for us.  People with disabilities were 
horribly abused in the Third Reich.  And the U.N. universal 
declaration of human rights very much meant to address that.  
In the '50s and '60s we saw the beginning of the parent 
movement.  In the '60s and '70s we saw the civil rights 
movement and most of our disabilities laws. 
   We have seen a disability movement particularly with 
psychiatric survivors and people with other what are called 
mental disabilities coming out and saying, look, we have a 
disability but we are not broken and we don't want to be 
controlled.  The self-advocacy movement now, it's very 
important to understand that if your son or daughter has a 
cognitive or intellectual disability, it's very important to 
understand that the notion of self-advocacy, of them speaking 
for themselves is what we are aiming at, at all times. 
   You will find some statements of rights, if you look on the 
web.  I recommend you look at any of these, if you want to try 
to figure out what someone's rights are.  The Developmental 
Disability Services and Bill of Rights Act really has strong 
language about what we expect from citizens who have 
developmental disabilities.  Obviously the Americans with 
Disabilities Act, the Olmstead Supreme Court decision, IDEA 
has significant language about rights. 
   I'm going to recommend two other odd sources, the Montreal 
Declaration on the Rights of People With Intellectual 
Disabilities and Healthcare has a very significant piece on 
supported decision-making that was written under the auspices 
of the Pan-American Health Organization and World Health 
Organization.  It is quite useful.  You can find it on line.  
The U.N. Convention on the Rights of People With Disabilities, 
particularly the section on legal capacity is a really useful 
one to look at. 
   So, as a mom or dad, brother, sister, the thing that we need 
to think about is whose life is it anyway?  When we start out 
with a son or daughter who is newly diagnosed, sometimes we 
think that we have a right to treatment, or a right to cure.  
Sometimes we look at school and it says we have a right to 
free appropriate public education, and we are also looking for 
ways to get over the deficits.  And program and program and 
program is so important in somebody's life. 
   We also think the basic right to safety and security is 
something that we want for our sons and daughters.  We want 
that for all citizens in our communities, and certainly no 
less for folks who have disabilities. 
   But, I want to point you at really the seminal statement of 
rights, I think, in the disability field, which came from a 
blind advocate who, Mr. Tenbrook, who said, as people with 
disabilities, we have the right to live in the world.  That is 
what we are trying to work on as families of people with 
disabilities, is how can you have the rights to proceed in 
your ordinary life?  How do you have enough money in your 
pocket to buy your own lunch?  How do you have the right to 
have a job?  How do you have the right to use public 
transportation? 
   What are all of these other rights?  How do you have a right 
to control your own life?  When we start talking about 
decision-making and guardianship, often this is where we come 
right to the nub of it. 
   When we think of decisions we want to be able to support as 
parents, you have to think of a whole range of decisions.  
Simple decisions of personal taste, what color is my room 
painted?  Or what color is my clothing?  Don't think of these 
as unimportant.  These are decisions that people with 
significant disabilities for millennia have not been able to 
make because they have been thought not to have opinions.  Now 
we know people care very much.  They care what they wear.  
They care what color their room is.  Some do, some don't.  
They care, what do I do for fun?  How do I spend my time?  
What music do I listen to?  Who do I hang out with? 
   Who do I live with?  These are all questions that are 
personal.  Whom do I love?  No one, no one can support you in 
a decision to tell you whether you love someone or not.  That 
is a person with a disability making their own decisions about 
the things that are most personal and most close to the heart.  
We get expert input on a whole bunch of other things, whether 
to have surgery, how to manage our money, whether to marry, 
not whom to marry.  These are questions we ask for input a lot 
of times. 
   If I marry, how will it affect my SSI?  Good question and 
one which it doesn't hurt to have a little bit of expert 
opinion on.  As parents we worry about a whole bunch of risks.  
When we are talking about guardianship or supported decision-
making, often we are talking about trying to reduce people's 
risks to as close to zero as we can get them.  So we worry 
about, you know this as well as I do, worry about health 
status.  Somebody's condition is going to cause a different 
problem or secondary disability. 
   We worry about someone having an accident or getting injured 
doing something in an ordinary life, being in a car accident.  
We worry about abuse and neglect, financial abuse, physical 
abuse, sexual abuse, emotional abuse.  We worry about how 
people are spoken to.  We want to control those things, 
because we love our son or daughter.  We don't want them to be 
hurt. 
   We worry about loneliness and isolation.  We worry about 
what does it mean to be shut away?  How do I balance the risk 
of loneliness versus the risk of maybe being too much in the 
world and being exposed to all of the other risks that are out 
there.  We worry about violence and even more now we need to 
worry about crime.  We are finally realizing a lot of the 
things we used to call abuse really are crimes, and we need to 
stand up for people with disabilities and make sure they are 
not victims of crimes.  It's easy as a person, as a mom or dad 
or family member of somebody with a disability to say, I'm 
just going to wrap them up in cotton and keep them safe, tuck 
them away in a nice house with nice furniture and make sure 
nobody ever hurts them. 
   Good luck with that.  That is not how it works with our kids 
without disabilities, and that is not going to be how it works 
with our kids with disabilities. 
   Important thing to remember is that overprotection is also 
dangerous.  Robert Perske did some of the earliest and most 
impactful thinking on the dignity of risk for people with 
intellectual disabilities.  He said overprotection may appear 
on the surface to be kind.  But it can be really evil. 
   Making decisions is part of life, getting through your day 
and learning and choosing, and engaging, being part of the 
world, is how we have the right to live in the world. 
   If we are overprotected, if someone else is making all of 
our choices for us, we can't do that.  Because I'm a mom, 
before I get into some of the legal models and other ideas, I 
want to talk about what I think is what drives us most, when 
we are thinking about guardianship or supported decision-
making or other models. 
   And that is, as parents, we have a strong sense of our duty 
to love our son or daughter.  I often tell young parents, if 
you can help your kid understand that you love him or her, 
with her disability, just the way she is without changing 
anything, you will have made an enormous contribution. 
   So I want to remind you, I don't know if you have ever read 
"A River Runs Through It" or seen the movie, it's an amazing 
story.  And it has a sentence that I think is incredibly 
important.  It says it is true we can seldom help those 
closest to us.  Either we don't know what part of ourselves to 
give, or more often than not, the part we have to give is not 
wanted.  We can love completely, without complete 
understanding. 
   I don't have to tell you this.  If you are a parent of a 
person with a disability, you already know that you are loving 
somebody without necessarily being able to understand what 
their experience is from their point of view.  The more we do 
that, the stronger it gets I think, but not easy to do. 
   The goal as we look at models of decision support is to move 
from the least restrictive to the most restrictive, to move 
from temporary kinds of supports to permanent support, to move 
from specific supports and specific life areas to plenary 
supports or supports that affect someone's entire life, and 
always with a goal of preserving the person's rights. 
   Supported decision-making is a phrase that you will hear 
from a lot of advocates.  Basically, the idea is to use 
accommodations to support someone to decide and communicate.  
A lot of people are quite able to make decisions.  They are 
just not able to communicate those decisions.  If you think of 
using a communication device, or alternate communication or 
augmented communication, obviously that is an accommodation.  
For some folks like my son Charlie, the accommodation to 
communicate is really having other people around you who 
understand the little signals that you put out and can try to 
read what is in your mind. 
   That is not perfect.  We are still working for ways for him 
to communicate.  But you use what you've got.  The idea is you 
use more accommodation for more important or difficult 
decisions.  That you allow for choice, so you don't just say, 
is it okay if we do this.  But you explain these are the 
options, here is where you can and cannot make a choice. 
   That you allow for trust, try to build relationships with 
the person so that you can tell whether they trust you to make 
a decision or not, whether they trust you to support them in 
their decision-making process or not. 
   And to allow for relationships, and that is a plural.  
Supported decision-making is almost impossible to do if it's 
just you and your son or daughter.  You really need to think 
about how do I bring together a circle of support, how do I 
bring together a person-centered team? 
   I want to point something out to you, because when we talk 
about decision support, sometimes we think it's something just 
for people with disabilities, but we all use decision support.  
Anyone who ever calls an expert like a lawyer or a doctor or 
accountant and asks for advice, anyone who seeks advice from 
friends or family, read "Dear Abby" or write a letter to an 
advice columnist, if you seek counsel from wise people, such 
as clergy members, it's all a form of decision support.  It's 
all a form of reaching out to other people, and getting 
advice. 
   Now, classically, the legal rule is that only the person who 
decides can decide whether to take the advice or not.  So the 
point is, you don't want to force advice on someone with a 
disability.  You certainly don't want to say, well, because 
you have a disability and I don't my advice is better than 
whatever your idea is. 
   Often people with disabilities invent wonderful solutions to 
things that people without disabilities don't even think 
about.  So very important to sit back and listen.  Given 
decision support, and given the notion of person centered 
planning, the really important question to ask as a parent is, 
why should people with a disability need a guardian just 
because they can't manage alone? 
   None of us manage alone.  So, being pushed into having a 
guardian, having total control, giving up your civil rights 
and your personal rights and your legal rights, just because 
you can't do it all by yourself, seems like a bit of overkill. 
   Person-centered thinking means you have circles of supports.  
You have shared decision-making.  You are open to challenge 
from other people.  With Charlie we might sit in a team and 
when he was little, we would sit in the team and let his 
little brother come forward and say, mom, I don't think Johnny 
would like that and here is why. 
   Good advice comes from a lot of places.  It came from kids 
in the neighborhood, and other folks, people that he trusts in 
his life, people that he liked. 
   It involves having the right support for the right task.  So 
when Charlie interviews people to be his personal assistants, 
we just watch him.  He interviews and he will scoot his chair 
over, and touch somebody that he wants to trust, to work in 
that very highly personal situation of being a personal 
assistant. 
   If he doesn't scoot over and touch someone, he may like them 
but he just doesn't feel quite comfortable in the highly 
personal relationship.  Well, that is a form of person-
centered thinking, and supported decision-making. 
   He needs the team.  He needs all of us sitting around him 
noticing who he touches, and who he responds to, and we are 
the ones who translate that.  But he is the one actually 
making the decision.  We are watching. 
   So trying to understand that, trying to understand how does 
someone show what they are happy with or what they are 
interested in, is really important.  What are the signs of 
someone being stressed out?  These are important signs to 
know, if you don't have verbal communication in place. 
   Be open to questions, be open to rethinking what, are you 
sure this isn't your own convenience or interest here?  Are 
you sure you don't want him to do this just because it's 
easier for you?  I'm going to talk about that a little because 
we talk so much about people with disabilities having self-
determination, sometimes we forget families should have self-
determination too. 
   And just because you have a son or daughter with a 
disability doesn't mean you give up your life to manage their 
life.  But the reality of it is most of us are doing more than 
we thought we would be doing and for longer periods of time.  
Your thinking is important.  It is an important piece of the 
mix, being able to say honestly, you are right, that is for my 
convenience, or it is so that I'm able to keep my job, or 
whatever it is.  It does involve me.  But I'm part of the 
team, and here is how we come at that decision. 
   I'm not writing a plan for my son that is a peeling a grape 
plan.  I'm not writing a plan for him that is going to solve 
every problem before he knows he has a problem.  He has to 
live with the family and with everything else that is going on 
in the world.  He is not a prince.  Nobody died and made him 
king.  He is going to negotiate with the team on what the 
choices are, and we are going to go with what works best. 
   When you are doing person-centered thinking, you are always 
thinking about the person's strengths and support needs, 
accommodation needs.  You are thinking about the dreams and 
nightmares of the team too.  This is obviously a process and 
it's something that you make your way into over years.  When 
your child is little, you can start asking questions and 
offering choices early.  You can start saying, do you want to 
wear purple socks or red socks?  And trying to watch which one 
they really want to do. 
   It's never too late to start giving people options.  It is 
never too late.  Lots of people with disabilities have spent 
time learning to be compliant, learning to do what other 
people want them to do.  They haven't learned to speak up and 
say, here is what I want. 
   If your son or daughter is a teenager, and you can get them 
connected to a self-advocacy group, they will begin to learn 
those skills.  Sometimes they can learn them from you as a 
parent.  Sometimes they can't. 
   Sometimes you need to give people a chance to go out there 
in the world and try, before they can really figure out how to 
do it themselves. 
   You have got to figure out how to learn to listen.  It is 
not easy, and you have to keep reminding yourself, at least in 
my experience, you have to keep reminding yourself.  You have 
got to develop your confidence. 
   So you have to feel like when you say, you know, I think 
when he does that, I think it means he really likes this.  You 
have to be confident that you are right about that. 
   And it takes a while to get there.  You want to also 
encourage others to participate in the process, because you 
don't want to be in this by yourself.  You want to be able to 
have significant others in your life, neighbors, friends, 
siblings, your family, your extended family, you want people 
to be able to step up and say, I think we are overdoing this, 
or I think you might be going a little bit too far down that 
road. 
   Sometimes those are trusted providers.  Sometimes it's 
people in school or staff in organizations.  But you can't 
always expect people in school to tell you what is going to 
work best for your kid.  Because believe me, they are up to 
their eyeballs trying to figure out what is best for your kid 
in school, and they may not be thinking about, what are the 
long term impacts if this family seeks a guardianship order? 
   What are the long-term impacts if the family tries to take 
on person-centered planning and do supported decision-making 
and really try to listen to what is going on with their son or 
daughter?  These are tough things to think through and you 
need your buddies around you. 
   Some other strategies, and for some of these you are going 
to need to get a lawyer, besides beyond person-centered 
planning or in addition to person-centered planning, you may 
want to seek power of attorney.  Power of attorney is 
interesting, because it can be very specific to purposes such 
as healthcare or a particular situation.  You need to 
understand the legal structure of power of attorney is that it 
is given to you by the person with a disability, and they may 
take it back whenever they wish. 
   So setting up situations where you go in and review whether 
they are still comfortable with it, whether they wish to have 
it taken back.  It is a really good way to do it, because you 
end up with some decision-making power that can be recognized 
by healthcare providers and others, without needing to seek a 
guardianship order.  A guardianship order once it's in place 
is a court order.  And to have it reversed is a significant 
process.  It can't just be initiated always by the person with 
the disability. 
   Think about how you use a special needs trust.  A special 
needs trust is a financial arrangement that allows you to 
appoint a trustee who really acts almost as a guardianship of 
someone's money. 
   So they make decisions about how money is managed and 
disbursed from someone's account.  Very important when you are 
talking about special needs trusts to have a lawyer, because 
every state's laws are different.  And one wrong word and you 
have probably just put their benefits under SSI or Medicaid in 
jeopardy. 
   So think through where you can get advice about a special 
needs trust, but if you are really worried about managing 
someone's financial situation, that is probably a much better 
way to go than a full-fledged guardianship is. 
   You can use a trust to do all kinds of things.  You can use 
it to support person-centered planning.  I've heard of trusts 
where it makes an argument that every year, every other year, 
the person with the disability will go spend a vacation with 
their brother in a different state, and the reverse year the 
brother and his family will be funded to come and stay with 
the person with the disability.  That gives everyone a chance 
to stay in touch, even though they live in different states.  
And it's ongoing.  It's a way of looking at the future.  It 
keeps person-centered planning in place.  And yet it's 
supported by the trust and managed by the trustee. 
   A trust allows you to fund what is important to you or what 
you think is important to your son or daughter.  So living 
situation, access to spending money, those kinds of things.  
Fund what is important to them.  And I want to point you at 
something.  As far as I know, there is only one state in the 
United States, Washington State, that has a pool trust that is 
state sponsored.  So people in Washington state can create 
special needs arrangements, and have their money managed by 
the state money managers.  And it's really pretty interesting, 
if you want to look at it.  I think other states may want to 
start looking at that. 
   I'm really interested in what happens now in this financial 
downturn, if we are going to see that people who are part of 
that special needs trust have access to better supports than 
folks who are outside of it. 
   Other strategies to think about, that really is easy to do, 
if your son or daughter has SSI, and you are worried about 
managing their financial situation, set yourself up as a 
representative payee.  It's very easy to be a payee on 
someone's SSI.  It means you have to do the paperwork.  You 
have to do the reporting.  You manage the money and you are 
responsible for the money. 
   But if money is your big worry, what is going to happen if 
my son or daughter has too much cash?  Then this is a good way 
to do it.  Electronic banking and technology gives you all 
kinds of ways to control money that you didn't used to have.  
So you can have a prepaid debit card, where your son or 
daughter can have access to ten or $20 at a time.  You can 
download it over the phone, and refill the account if they 
suddenly need more money. 
   But meanwhile, you don't have to worry if they lose the card 
or if someone steals it from them, they don't have access to 
an entire account. 
   Really important way to support somebody, and give them 
freedom, give them a little bit of plastic in their wallet, 
without overdoing it.  You don't want to be handing out a 
dollar at a time as that is not too adult.  Use technology to 
connect and communicate. 
   Use cell phones.  Think of the use of cell phones, and how 
we support decisions in this modern age.  If we can have a son 
or daughter who can carry a cell phone or GPS device or chip 
in their wheelchair that opens their front door and locks it 
behind them, there is a lot of technology like this that helps 
us avoid risk and keep people safe.  Monitoring systems in the 
house, Night Owl Services out of Madison, Wisconsin, is one 
great one.  Rest Assured, out of Indiana, is another great 
one. 
   There is, I think we are going to see a lot of advances in 
terms of technologies that people can use to stay safe. 
   And use technology to supplement information.  So make sure 
that you know what you need to know, and you can have accounts 
where your son or daughter has access and so do you.  And you 
use the web to manage that. 
   We have to be thinking more and more in those directions. 
   A new way of thinking about guardianship is that at one 
time, it was seen as a benign way to protect people with 
disabilities.  It is now seen as an intrusion into a person's 
basic civil and human rights, and a legal process to be 
avoided. 
   One of the foremost experts on alternatives to guardianship 
in the United States is Don Hoyle, from the ARC of Michigan.  
Don wrote this in an article called Alternatives to 
Guardianship you can find on-line with an easy web search.  He 
does workshops all over the country.  There are a lot of other 
people who do too.  Lawyers like Stan Hare who, Stan did 
foundational work on what are some of the alternatives, trying 
to keep track of how other countries and how all of the states 
in the United States are beginning to create more and more 
alternatives to guardianship, and finding ways to keep people 
with disabilities from needing to have a guardianship order. 
   It's a very important piece.  Remember those first slides, 
where I talked about the changes in our society, and the 
people who give you advice as a mom or dad are not necessarily 
people who are completely up to date on what's the new 
thinking in disability and disability advocacy.  So, for 
example, one of Charlie's teachers at school said, of course, 
you are going to need guardianship orders now that he is 18 
years old. 
   And I struggled with that, and I thought about that, and I 
talked to other people about it.  And you know, I don't need 
guardianship orders.  We don't have guardianship orders for 
Charlie.  But from her way of thinking, that was the state-of-
the-art and it was the best advice that she could give.  What 
she didn't realize is that if he had a guardianship order in 
the state we are living in, he couldn't vote. 
   He doesn't vote right now.  I'm still trying to figure out 
ways to convince myself that I'm not voting for him, when I 
try to read who he is in favor of.  But I have a lot of 
friends whose kids really do vote and care deeply about it and 
are deeply knowledgeable about it and if they had a 
guardianship order, it would really impede their ability to do 
that, as well as their ability to enter into contracts of any 
kind including marriage contracts. 
   So it is really important to think about where you get the 
advice from, and why someone might be giving you the advice.  
They think it's good advice.  Or someone tells you, now that 
HIPAA is in place, health insurance portability, 
accountability and -- I can't remember what it's called, 
HIPAA --  (chuckles) anyway, now that it's in place, should we 
have guardianship to make sure our kids can get healthcare 
that's proper.  Well, I don't have guardianship for Charlie.  
And he has had a car accident, where he broke his ankle and 
needed to be in the ER, needed to have emergency treatment.  
There was no need to have a guardianship order.  We would have 
needed the guardianship order to stop his treatment for an 
emergency.  You are not allowed to make medical choices that 
are abusive. 
   And I completely agreed that he needed treatment for his 
broken ankle, and they completely agreed, since we were his 
parents, and he was on our insurance, that that was fine, and 
they would go forward and they didn't seek any other kind of 
advice from us. 
   Another alternative, he had to have his gall bladder taken 
out suddenly in an emergency, and the same thing.  The doctor 
said, I said I'm not his guardian, is that a problem?  They 
said no.  If you want us to try to not take his gall bladder 
out, we might need you to be a guardian.  But no, this is the 
recommended treatment, and it was a pretty involved surgery, 
and pretty dangerous, but the only way to remove it was to go 
forward.  Think of healthcare in terms of, are you going to be 
asking for things that are outside of the norm of medical 
protocols?  You might want to be thinking about do I really 
need to be a guardian. 
   Look, some people still are guardians.  They feel for some 
reason that they have to be a guardian.  Maybe they already 
are a guardian.  Sometimes there are questions of shared 
custody or legal status that make guardianship more advisable.  
Sometimes there is a history of guardianship.  Sometimes there 
is a breakdown of someone's person centered supports or 
natural supports.  Sometimes there has been no exposure to 
alternatives.  People haven't had a chance to learn, gee, 
there is something else I could do instead of this, and they 
end up being a guardian. 
   Sometimes they get really strong advice from a legal or 
financial advisor that says you must be a guardian.  And they 
follow through and go through with a guardianship order.  I 
want to point out a couple things.  If you are a guardian, 
these are your duties. 
   Work within state law and the scope of the guardianship 
order.  That's very complex in some places, and sometimes the 
scope is very limited.  So you may have financial 
guardianship, but you can't make decisions about what kind of 
living situation someone is in, and whether they live in ICFMR 
or a group home or gated community or single apartment.  
Sometimes your guardianship doesn't reach as far as you think 
it might reach.  If you are a guardian, you have the 
responsibility to cover values and preferences of the 
individual. 
   You are not allowed to go in and just substitute your 
decision-making for their decision-making.  You are not 
allowed to go in and just say, well, gee, I don't like urban 
environments, so even though they like it, I don't want my son 
or daughter to live any place where there is a bus route.  You 
are not allowed to do that.  If that is where they want to 
live and that is what they like, you really need to take that 
into consideration.  You need to as a guardian consider and 
encourage the participation of the individual and help him or 
her regain their legal capacity. 
   Guardianship order is a removal of legal capacity.  It is 
essentially adding a legal disability to all of the other 
disabilities in someone's life. 
   And you have a responsibility to try to return that capacity 
to the person, if you are their guardian.  Very important to 
realize that even if you are a guardian, there is a good way 
to do it and there is a not so good way to do it. 
   Your last responsibility, at least the major one, is to 
minimize restrictions in their life.  You have a 
responsibility to make sure that their life is not controlled 
by other people, any more than it has to be.  That they have a 
chance to make choices in their everyday life, that they have 
a chance to have the freedom to live in the world. 
   I put a couple of resources down here.  That last bit I gave 
you was from the National Guardianship Association standards 
of practice, which you can find on-line. 
   If you want to look at person-centered planning, there are 
hundreds of articles on the Quality Mall Website which is 
qualitymall.org. 
   I highly recommend you look at the article "Rethinking 
Guardianship" by Don Hoyle and Kathleen Harris and "The 
Dignity of Risk" by Robert Perske.  In addition I would 
recommend you look at the Websites of the National Association 
of Council on Developmental Disabilities.  You will find 
wonderful resources there on the history of the disabilities 
movement, and other alternatives to guardianship kinds of 
articles. 
   Likewise, the National Disability Rights Network, NDRN.org, 
and also the Association of University Centers on Disability, 
AUCD, you will find resources there that will help you connect 
to people in your community and get some help to make the 
decisions that you have to make, so that you can help your son 
or daughter on an ongoing basis make the decisions that they 
need to make so that they have the right to live in the world. 
   Thanks for your time today.  And give me an E-mail if I can 
do anything for you.  Thanks. 
   (End of Webcast at 1:40 p.m. CST)


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