Center on Victimization and Safety, Vera Institute of Justice 

Autonomy is Safety: Using Supported Decision-Making to Facilitate the Safety of People 

with Disabilities 


>> JANNETTE BRICKMAN: Good afternoon, everyone. Thank you for joining our 
webinar today. I'm Jannette Brickman with the Vera Institute of Justice Center on 
Victimization and Safety. I would like to welcome you to today's webinar. We are 
pleased to bring you this as part of our 2019 end abuse of people with disabilities 
webinar series. 

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The webinar recording will also be posted on the end abuse of people with 
disabilities websites. Our presenter today is Ashley Brompton. Ashley joined the Center 
on Victimization and Safety as a program associate in November 2016. As a sibling of a 
person with a disability who was a victim of a sexual assault, she brings passion and 
knowledge about individuals with disabilities, particularly intellectual and developmental 
disabilities and victimization. At Vera, Ashley provides technical assistance to victim 
service providers and disability service providers around the country that are striving to 
improve services to survivors of domestic and/or sexual violence who have disabilities 
and deaf survivors. 

She also coordinates the center's national outreach, including the end abuse 
of people with disabilities webinar series and monthly newsletter. Additionally, she 
provides expertise and support to a project focused on creating resources for first 
responders, victim service providers, attorneys, forensic interviews and others on 
addressing the needs of people with disabilities. Prior to joining the Vera Institute of 
Justice, Ashley was the criminal justice fellow at the arc's national center on criminal 
justice and disability where she advocated on behalf of individuals with intellectual and/ 
or developmental disabilities who were involved with the criminal justice system as 
victims of crime or suspect offenders. 


Ashley also advocated on behalf of people with disabilities in criminal court 
and mental health diverse court in North Carolina. Ashley has a Juris doctor from wake 
forest and a bachelor's degree in political science from Florida Gulf coast university. She 
is licensed to practice law in Florida. Thank you, Ashley, for being with us today. I will 
now turn the presentation over to you. 

>> ASHLEY BROMPTON: Thanks, Jannette so much. Thank you so much for 
being with us today. To talk about this really important topic around how to encourage 
self-determination and autonomy for people with disabilities, while also maintaining 
safety for them. I think this is an important dynamic that we don't talk about enough in 
that a lot of our responses to victimization and the risk of victimization is to protect 
individuals. And there is a myth that increasing their ability to make their own decisions 
and their autonomy will make them less safe when in reality it empowers them to ensure 
their own safety. 

So in this webinar today, we're really going to focus on how we, as service 
providers, can empower people with disabilities to make decisions in a safe way. We'll 
be talking a little bit about some of the historic responses to victimization that have 
existed in society, some of the problems with those historic responses, and then getting 
into what can we do that maybe is a better model moving forward to help people live 
autonomous and safe lives. 

So I want to start today with talking about victimization of people with 
disabilities because that is really the crux of the issue here is that there is a societal fear 
that people with disabilities are more likely to be victimized and that is founded in 
statistics that we have. We know that people with disabilities are more likely to 
experience violence generally. They're three times more likely to experience rape, 
sexual assault, aggravated assault and robbery than people without disabilities and that 
is the Department of Justice, bureau of justice statistic. We know that limited research 
exists, but the research that does exist paints a dim picture about the number of people 
with disabilities who are victimized in our society. 

The national public radio last year did a really interesting expose on 
victimization of people with intellectual and developmental disabilities. Which you'll hear 
me referring to as IDD. And in that study --in that sort of expose they released, they 
found statistics that said that people with developmental disabilities are seven times 
more likely to experience sexual assault than people without disabilities. And they used 
Department of Justice statistics for that number. They found that 49% of people with 
intellectual disability will experience ten or more sexually abusive incidents in their 
lifetime. So almost half of all people with intellectual disabilities will experience multiple 
incidences of abuse in their lifetime. 

We know that 14% of men with disabilities reported experiencing sexual 
violence and that's compared to 4% of men without disability. So it's a much larger 
number. We also know that women with autism are almost three times more likely to 
experience sexual coercion than people without disabilities. And so all of this just goes 
to show that clearly, you know, people with disabilities face an increased risk. And 
people with certain types of disabilities face even higher risks. So as we already talked 
about, people with intellectual or cognitive disabilities are at some of the highest risk for 
victimization. People with psychiatric or mental health disabilities, people who have 
multiple disabilities, women who have disabilities, and people of color or other 
marginalized identities, LGBTQ folks, people who --immigrants with disabilities are all 
more likely to experience victimization. 


These additional layers of marginalized identities put them at further risk. So 
there's really --there's statistics to back up the societal assumption that people with 
disabilities are more likely to be victimized, but why are they more likely to be 
victimized. Factors that contribute to the risk include devaluation. This idea that people 
with disabilities are less valuable to society than everyone else, that they experience 
less harm when they are hurt or victimized. I've actually heard from people say that 
people with intellectual disabilities, for example, don't understand what happened to 
them and don't process trauma so that victimization has no effect on them. These are 
myths that persist. And the idea that people with disabilities are less than everybody 
else persists. And so that's one really common reason why it seems like victimizing 
someone with a disability isn't as bad as victimizing anyone else. 

They're presumed to lack credibility. Law enforcement, prosecutors, courts 
don't always belief people with disabilities. They think they people with disabilities don't 
process what happened to them, don't understand what happened to them, or frankly, 
they think that people are making things up. Perpetrators know about this lack of --this 
perceived lack of credibility and use that and say no one's going to believe you if you tell 
someone what happened. So that's a really common factor. Isolation and segregation, 
this lack of visibility and exposure, people with disabilities very often are not interacting 
with society in the same way as people without disabilities do. Perhaps they are living at 
home, but they really only go out to go to their day program which is sort of isolated and 
it's --you know, a small group of people and it's the same people every day. There's no 
real exposure to society as a whole. Or maybe they live in an institution where they 
never leave the premises of the building that they live in. 

All of that just leads to a lack of visibility about the abuse that might be 
occurring and a lack of exposure and oversight. They have an increased exposure to 
potential abusers. There are people who believe that because of all of these other 
factors, it is easiest to target people with disabilities because of, you know, they're 
isolated, they have less value to society, and they're presumed to lack credibility and all 
of these other factors, so they actually seek out situations where they will work with 
people with disabilities. For example, transportation providers or as vocational rehab or 
day program supervisors where they have exposure to --to potential victims. Almost 
half of all victims with disabilities interact with their abuser only by virtue of them having 
a disability. Which means that if they didn't have a disability, they would not even meet 
their abuser. Typically it's a para transit provider or a caregiver or someone interacting 
with them because of their disability. 

There's a culture of compliance. People with disabilities are taught particularly 
if they have a disability from childhood, they are taught to obey the instructions that 
they're given from medical personnel, from caregivers, from others and to do what 
they're told, that it's for their own good. And to do what needs to be done. So they start 
to believe that they should just do what they're told and there's a culture of compliance, 
I'm going to do what the people tell me to do because they're doing it for my own good. 

There's also just --you know, they're seen as easy targets for some of the 
reasons that we talked about. They're seen as more compliant, no one is watching over 
them. There's not as much oversight. They're seen as quote, unquote desperate. Maybe 
because they have a disability, this is the only --you know, we've heard people say this 
is the only action they're going to get. Things of that nature whereas they are seen as 
desperate for attention and willing to take even negative attention. So they're seen as 
easy targets for perpetrators. 


They're also denied education about healthy relationships and healthy 
sexuality. In school, even though there's been this move towards mainstreaming 
children that were originally in special education classes, much of the time when sexual 
education comes up, they are removed from those classrooms and they're not receiving 
information on what healthy relationships look like or healthy sexuality and they're not 
learning about boundaries and developing their own boundaries. So, for example, 
they're not learning what is --what makes a good touch, what is a touch that you feel 
comfortable with versus what is negative attention or a negative --a bad touch. They're 
never learning some of those early lessons that most of us learn. And so they're really 
being denied information that will help them make better decisions when it comes to 
sexuality and relationships. 

They're also systemically denied the right to make decisions about their 
relationships and bodies. If they live in group homes or institutions, there are actually 
rules around regulating their --their interactions with others including relationships, 
regulating their bodies. For example, there are some stories that we've heard out of 
group homes where all of the women who live there are given birth control so that 
they're all on the same cycle and it's easier for the caregivers. We've heard stories 
where, you know, there are just rules that you cannot have a relationship with anyone 
else who lives in the group home, even if it's a completely consensual relationship. So 
these rules are sort of imposed on the people with disabilities and they get that 
messaging that they don't have the right to make decisions that other people are making 
decisions for them, and they lose the freedom to decide about how they interact with 
other people. 

And they also just receive negative messaging about relationships and 
sexuality generally, that no one will want them or love them because of their 
disability. They get these messages from caregivers and parents and peers. And 
basically society as a whole tells them that they are to be pitied and not valued. And 
these messages resonate with them. So when they do get positive attention, they latch 
onto that, even if it's not really positive attention. Even if it just seems to be positive 
attention, it's something that they value enough to put up with maybe some negative 
behaviors that come with that and can place them at risk. So the next thing I want to talk 
about is how we historically have responded to victimization of people with disabilities. 

We as a society have responded in very specific ways. And a lot of that is 
taking away people's decision-making power and their freedom. So we have chosen as 
a society to make people safe by taking away some of their independence and 
autonomy. Historically. And we're going to talk about a few ways in which we've done 
that. But first, I want to ask people if you or your agency have responded to reports of 
victimization of a person with a disability that you serve, what was your initial response, 
what action steps have you taken? And so I'm going to encourage all of you to let me 
know sort of what you have experienced in your work. So I'm seeing something about 
believing first, always believing the survivor, meeting and talking it out. Abuse referral to 
a victimization agency. Then I see reporting to authorities, contacting adult protective 
services, filing a vulnerable adult protection order. 

And so a lot of these responses are sort of the traditional responses which are 
report on behalf of the person with a disability because they are unable to do so. So 
contact adult protective services because you don't feel that the person with the 
disability is going to be able to report on their own and oftentimes this is due to 
mandatory reporting policies that we'll talk about. A lot of this is rooted in the traditional 


response to protect a person more than help them get the power back. So one person 
has said really help them get their power back that is taken away by their victimization. 

So that's really what we're trying to talk about here, how do we give people 
with disabilities the power to decide when, how, and to whom their stories are 
shared. And how do we give them the power to decide how they interact with others in a 
safe way, what safety looks like for them. So instead of us determining what we think 
safety would be for them, which is, you know, making a mandatory report on their behalf 
without consulting them, for example, or reporting it to authorities without consulting 
them, for example. Instead of doing that, really talking to them and helping them come 
up with the best --the best options for them. That's what we're talking about today, how 
do we encourage people with disabilities to have the last say in what is safe for them. 

And so historically society has responded to violence against people with 
disabilities in some pretty concrete ways that really are about limiting their ability to 
make decisions for themselves and to take risks. So we want to protect them not only 
from victimization, but from possible victimization or risk. So a lot of the response that 
society has traditionally used to respond to this risk is about taking away some of that 
decision-making power. And so there's an emphasis on safety and protection of people 
with disabilities because they see they cannot protect themselves. And this is 
particularly true with people --for people with intellectual and developmental disabilities 
and people with mental health disabilities, this fear that they cannot protect themselves 
or would not protect themselves. From the risk of victimization. So we have to do it for 
them. 

And there's been a few ways that we're going to talk about today that we've 
done that traditionally. Things like institutionalization, mandatory reporting policies and 
guardianship. But then we have to think about that these historic responses have not 
lowered the statistics that we talked about at the beginning of this webinar today. The 
statistics have showed that this is not --these traditional responses are not necessarily 
working, they're not the most effective way to respond because people with disabilities 
are still being victimized and they're being victimized in cycles multiple times over 
periods of time. So is there a better way? 

So the first response I want to talk about is institutionalization. For just a little 
bit of background for those of you who maybe don't know what institutionalization is, an 
institution is a long-stay residential facility that segregates and confines people with 
disabilities away from society. So it's a place where a person can a disability will go to --
a person with a disability will go to live and they will live and maybe work and participate 
in whatever activities they're going to do within the confines of that institution. And so it's 
very segregated from society and is just sort of a separate place for people with 
disabilities to live. And this was a really popular response to disability generally up until 
the 1970s and '80s. It was extremely popular. Children with Down Syndrome, for 
example, were sent to institutions when they were born, and they lived there their entire 
lives. People with other types of disabilities experienced similar things. That was just 
sort of what you did. 

And one rationale given for institutionalization was a desire to care for and 
protect people with disabilities. So the thinking was that if a person with a disability was 
in this kind of safe place, they would be isolated from the danger that is out in the real 
world. That was just one rationale. There were many rationales for institutionalization, 
but that was one. You know, there have been some scandals with institutions. So, for 
example, you might remember Geraldo Rivera's expose on Willowbrook which kind of 


opened the floodgates to looking at the abuse and neglect that occurs in institutions. So 
there's been a decline in the use of institutionalization over the past few decades. And 
there have also been some court cases, such as the Olmstead case that really limited 
the use of institutions. But there are still institutions today. They still exist today. And 
they are still, you know, operating in relative isolation today. 

So we know that people that live in institutions were and are often 
dehumanized, abused and neglected. Research has suggested that 82% of violence 
against people with disabilities is carried out in institutions or group homes. And that 
statistic is older. It's from the mid-'90s when more people lived in institutions than today, 
but I would say the general idea that the majority of the abuse that people with 
disabilities as a whole experience happens to those who are institutionalized or 
otherwise segregated from society. Can you all still hear me? 

And so really we have to think about why there is abuse of --in institutions 
such a problem. And a lot of it goes to just the extreme power imbalances between staff 
and the people with disabilities who are living in institutions. Staff in institutions make all 
of the decisions. Everything from what time people are going to get up in the morning to 
when they're going to eat dinner and everything in between. So there really is a lack of 
decision-making power for the people who are living in the institution because there's 
just no decision they're allowed to make. They're not able to make decisions about 
when they go see the doctor or when they, you know, go to bed at night or if they want 
to go out on Saturday. It's all those decisions are made by the staff. So there's just this 
really apparent power imbalance. We know that whenever there is that much power 
imbalance, the situation is rife for conflict and for abuse and neglect to occur. 

There's also little or no oversight. I think this has changed recently. I think that, 
you know, there's less of this sort of institutions operating in the darkness. There's a lot 
more regulation than there once was, but I still think that abuse happens because 
there's not always enough regulation or oversight. For example, there is an institution in 
central Florida that operated for years without ever getting an inspection and finally 
Disability Rights Florida went in and did an inspection and found just horrible, horrible 
conditions. People have died there. There are rodents running around. There was lack 
of medical attention. They found all of these things and no one had really gone into that 
institution for many years to identify those problems before finally someone went in. 

So I think nowadays we're starting to see more oversight, but I still think they 
live really in isolation and away from general society. They have little interaction with 
outsiders. When guests are coming to the institution, it's usually scheduled and in one 
part of the facility. For example, in like guest visiting rooms, not necessarily throughout 
the entire building. So there's less of an opportunity for people to see what is really 
going on behind these closed doors. 

In institutions, attitudes about people with disabilities are still problematic. You 
would think that the people who work in institutions would be more accepting of people 
with disabilities given that these are people they work with day in and day out, but these 
common attitudes that we discussed earlier and ableism and discrimination against 
people with disabilities doesn't go away when you get behind the walls of an 
institution. If anything, it's more extreme because the people who live in institutions 
these days in particular are usually higher support people. They have higher support 
needs than others with disabilities. And so there is, you know, a stigma against that as 
well. Also policies and procedures in these institutions do not value safety, 
confidentiality, boundaries or education. For example, there was one institution that I 


have experience with where they took off all of the doors to everybody's bedroom after 
one of the attendees was --one of the residents was sexual assaulted by a night 
attendant. 

The response to that, instead of putting stricter policies and background 
checks in place, was to take the doors all of all of the --off of all of the bedrooms so 
they could see in and see what was happening every step of the way. And so now the 
people with disabilities suddenly had no privacy and no safety in their own bedrooms 
and felt less safe and less secure. They couldn't close the door on people seeing them 
in private moments. Their bath rooms were exposed. There was just this lack of 
thinking --and the rationale for taking the doors off was they would be safe, that people 
couldn't sexual assault them behind closed doors. But in reality, it made them feel less 
safe. And a lot of policies and procedures in institutions do that inadvertently or on 
purpose making people feel less safe living there. 

They also just don't really respect confidentiality. So that's not really a thing in 
many of these institutions in the sense that oftentimes they're getting, you know, their 
medications in congregate settings. Oftentimes they're doing group therapy sessions 
where they're talking about specific and detailed moments of their lives that may have 
traumatic for them in congregate settings. So just a lot of the ways that they interact and 
the policies and procedures that are in place are not valuing their safety or 
confidentiality in these institutions. 

The other thing to think about is the staff trauma. A lot of the people who work 
in these institutions are low wage, marginalized people who in other --in other ways 
come with their own trauma or they've experienced trauma in the institutions. For 
example, maybe they've had a bad experience with one resident who had a violent 
response to something that happened, and now suddenly they think that every person 
in the institution is going to be violent. So they treat everyone as a violent offender when 
they are not, in fact. And that's very common. They come with their own trauma, their 
own baggage, for lack of a better word, and they don't get a lot of support. So the staff is 
really in a place where they are working a lot with people who are sometimes difficult for 
them to work with and they're not given a lot of support and understanding about it. 

And so this all just kind of comes together and creates a real environment 
where abuse and victimization can sort of thrive because of all of these factors 
together. Another response that we have created to address the victimization of people 
with disabilities is mandatory reporting policies. And they were originally designed as a 
response to abuse and assault of people with disabilities who in the eyes of 
policymakers could not advocate for themselves. So if you look at the legislative history 
for many of these laws --and every state has a mandatory reporting law for vulnerable 
adult or dependent adults at this point. If you look at the legislative history for many of 
these laws, there really was a sense among lawmakers that they needed to protect 
people with disabilities. That people with disabilities could not report victimization to the 
proper authorities and get the proper assistance that they needed on their own. That 
they needed to make sure that responsible professionals were making these reports to 
assist with that process. 

And the thinking was really if a person cannot protect him or herself, society 
must do it for him or her. So society must make the decision to protect someone if they 
cannot do it themselves. The policies were intended to break the isolation that people 
with disabilities often face and connect people to much needed services. So they were 
positively intentioned, I think, for the most part. They were designed to help people with 


disabilities. However, in some cases, mandatory reporting can have unintended 
consequences which may leave a person with a disability more vulnerable. And there 
are ways to make a mandated report that are less likely to lead to unintended 
consequences and we'll talk about that a little bit later. But there are some unintended 
consequences for mandatory reporting. 

Some of those are just built into the law. For example, the legal definition 
under the law of a vulnerable adult and a dependent adult is sometimes very broad and 
oftentimes it will cover people who have the capacity to report themselves that they 
wanted to make a report. Oftentimes these laws will cover people who, with proper 
support and assistance, could very well make reports on their own successfully. They 
also can undermine the trusting relationship that a person with a disability has with their 
service provider and they can take away autonomy and decision-making power from the 
person with a disability. Both of those are because these reports can be made without 
ever telling the victim themselves. So a service provider can and in many cases they do, 
make a report to adult protective services or to law enforcement without informing the 
person that they're making the report. 

And so this really can undermine the relationship that a person with a disability 
has with that service provider. They may no longer trust that service provider and the 
relationship that they've built might be hindered. They might also just feel like they can't 
tell that service provider certain facts about their life. And they might also feel like the 
decision was taken away from them, like they weren't able to decide how they wanted to 
respond to their own victimization. And we know that with survivors, it is very important 
to give them back the power that they lost in their victimization. And a lot of what we talk 
about in victim services is empowering an individual who has experienced domestic 
violence or sexual assault in particular so that they feel like they're given some control 
over their situation and making a mandatory report takes away that control, takes away 
their decision-making power. 

And it may make them less likely to report or reach out for services for fear of 
the unintended consequences. And I'll share an example here. I spoke with a woman 
once who was living at home with her parents. She was a young adult in her early 
20s. And she had reported that she was sexual assaulted in her home. She didn't say 
who did it, but there was a strong presumption that it was someone living in the 
household with her. The service provider she reported to immediately made an adult 
protective services --told her she was going to make an adult protective services report, 
but didn't do any planning with her around how to make sure that she would be safe and 
comfortable once a report was made. 

Adult protective services came in and removed her from her home. However, 
because of the state that she lived in, there was a long waiting list for community-based 
housing. So she couldn't get on that waiting list. And so she was forced to --she got on 
the waiting list, but she was forced to live in a nursing home for almost a year while they 
waited for placement for her. So for that year, she was living in basically what amounted 
to an institution. And really felt like she had given up all of the freedom that she had. You 
know, she had prior to that been able to go out with friends on the weekends and hang 
out with people that she knew, see her siblings and suddenly she was not able to do 
that anymore. 

And so she felt very powerless. She said that she regretted every day that she 
made the report because she would have rather continued to suffer through the abuse 
and not lost her freedom than lose her freedom in the way that she did. And there are 


ways that you can have conversations about mandatory reporting with a victim with a 
disability with a survivor with a disability. And help them plan for what will happen. So 
maybe it's identifying housing --a housing option before you make the report so that 
adult protective services has somewhere to put them. Maybe it is creating a real safety 
plan because there's an understanding that certain types of crime involve dynamic that 
make some types of intervention dangerous. When you think about domestic violence, 
the most dangerous part of --of a domestic violence relationship is when the survivor 
decides to leave the relationship. And when that happens, they're at their most 
vulnerable. And a person with a disability is even more vulnerable at that time. 

So really talking to them about how they can best, you know, adapt to what's 
going to happen, recognizing that there are legal obligations in place, but how can we 
do this in a way that is empowering for you as an individual. We'll talk more about that 
when we get to this new approach that we're going to talk about. 

A third response that we've traditionally had to victimization and the risk of 
victimization is guardianship. And so it was first designed to protect adults with 
disabilities from harmful and difficult situations. The goal was, again, to protect them 
from situations that might be difficult for them to handle on their own. And guardianship 
basically replaces the decision-making authority from the person with a disability to the 
guardian. And depending on the type of guardianship, the variety of decisions can be 
vast. So someone has a plenary or full guardian, this is also known as a conservator --
in some states guardians are called conservators. If someone has a plenary 
guardianship, they can make decisions around financial decisions, medical decisions 
and then health and welfare decisions which is a really broad category of 
decision-making power. 

Health and welfare is extremely broad and has been interpreted extremely 
broadly by the courts to mean almost any decision a person wants to make the guardian 
would be in power to make. If there's a limited guardianship, that's usually limited to 
financial or medical decision. So that narrows it a little bit. It really depends on the type 
of guardian. It's important to note that abuse can occur and does occur under 
guardianship. Guardians can be the abusers or they can use their role to perpetrate 
abuse. For example, if one parent is a guardian and knows that the other parent is 
abusing their child, they might want to protect the other parent and use their role as a 
guardian to do so. Or maybe they just don't know. All right. So just because you are a 
guardian doesn't mean that you know everything that happens to the person that you 
are a guardian for. 

We had a case that I worked with previously where the woman with a disability 
went to school every day. And her mother was her guardian and she had become her 
guardian because she wanted to protect her after a previous victimization, but the 
woman still went to school every day. And at school, she was sexual assaulted. And the 
mother, you know, called us crying and said I was supposed to be able to protect her 
from this, that's why I went through this whole process of going to court because I 
wanted her to be safe and I wasn't able to make sure she was safe. And so 
guardianship doesn't necessarily protect against abuse. But what it does do is take 
away all decision-making powers if you have a plenary guardianship. It takes away a 
person's ability to make decisions for themselves in almost every aspect of their lives. 

And so we talked a lot about the historical responses and some of the --the 
ways that those responses have really failed in providing safety for people with 
disabilities, but I wanted to talk about a new approach that really maximizes autonomy 


for people with disabilities. And why is that important? Autonomy and self-determination 
which is also known as making your own decisions, helps people with disabilities be 
healthier. It helps them be more independent because they're making decisions for 
themselves. It helps them be more adjusted. And they're more able to recognize abuse 
because they've received more education and support around the topic. So it makes 
them healthier and safer to give them and empower them with the ability to make 
decisions around their own lives. One approach to maximize autonomy is called 
supported decision-making. 

Supported decision-making is a decision-making process where a person with 
a disability retains their ability to make decisions, but they use supporters to help them 
make choices. They usually have a team of people around them who will help them 
make difficult choices in their lives. But at the end of the day, the person with a disability 
makes their own decision. And supported decision-making was sort of first introduced in 
the convention on the rights of persons with disabilities. And that was adopted in 2006 
by the United Nations. And it sort of provided human rights for people with disabilities on 
an international scale. 177 countries have ratified this CRPD, but the USA is not one of 
them. So in 177 countries, it is law that people with disabilities have the freedom to 
make choices. It is not the law here, per se. 

In some states, they have created supported decision-making laws, but not 
nationwide. But what this really does is it sets up a team of supporters as the new 
paradigm so that with disabilities are centered and able to make their own decisions, but 
they have this team of support from various areas of their lives who can help them in 
doing so. So what do supporters do? Supporters help people understand their options, 
responsibilities and consequences of decisions. They help people obtain and 
understand the information they need that is relevant to those decisions. And they help 
people communicate those decisions. And if you think about this, a lot of us in our 
everyday lives use supporters to help us make decisions. 

For example, I was recently looking to purchase a house. And when I was 
looking at properties, I had my dad come with me because I had never purchased a 
property before and I wanted to make sure that I was looking at the right things and that 
I was taking into consideration all of the aspects that I needed to look into. And so he 
came to look with me at a variety of properties and helped me make a decision that was 
right for me, which was to hold off on buying and rent for another year or two and save 
up some more money. And we had long conversations about the pros and cons of 
buying property. And so when you go to the doctor for another example, doctors often --
maybe they'll tell you you need a medical procedure, but they'll tell you the pros and 
cons of that medical procedure and what you can expect. And at the end of the day, it's 
your decision whether you should get that medical procedure or not, but they've laid out 
exactly what the expectations are and help you decide. 

And that's what supporters do. It's not always formal. Oftentimes it's not. In 
some states such as Texas, there are formal supported decision-making processes and 
agreements that can be signed, but in many places it's very informal. Oftentimes it's 
family and friends and caregivers who all sort of just help a person make day-to-day 
decisions. And so supported decision-making supports the concept of dignity of 
risk. Robert Perske who is a long time advocate for people with intellectual disabilities 
said "to deny the right to make choices in an effort to protect the person with disabilities 
from risk is to diminish their human dignity." 

This is acknowledging that life comes with inherent and sometimes positive risks 


and encourages individuals who support people with disabilities to balance the urge to 
protect them with the need for people with disabilities to be able to take those risks and 
have autonomy and respects the individual's rights to take reasonable risks. So that is 
saying support staff is there to help and to help a person process and to give advice and 
to give feedback, but is not there to, at the end of the day, make the decision for the 
individual. So there's some principles of supported decision-making in this sort of 
autonomy framework that we've been talking about. And I've identified four of them. The 
first is that adults, whether they have a disability or not, have the right to make their own 
decision. The second is that adults have a right to make decisions, you as their support 
person or others, may disagree with. 

People should be offered support in order to make their own decisions before 
decisions are made on their behalf. So the first step should always be encouraging the 
person to make their own decision before we default to a place where support staff is 
making a decision. And the fourth principle is that it's not one size fits all. Different 
solutions and supports work for different people under different circumstances. Some 
people might need more support in some circumstances than others. And I'll give 
another example. 

My sister has a developmental disability and I act as one of her support --
supporters in her supported decision-making scheme. When she goes to doctors, she 
has very clearly outlined that she needs assistance in communicating to doctors what 
she wants to talk to them about. It's very hard for her to communicate to them what her 
priorities are in her visit. And she has a lot of medical appointments. So sometimes she 
gets confused with the different doctors. So she had told me that part of my role is to 
help her express what she needs to express to a doctor. So before each of her 
appointments, we go through and list everything that she needs to talk to that particular 
doctor about and we write it all down so that she can remember it. But she doesn't want 
me to go into her appointment with her because she feels like that's invading her 
privacy. She wants to talk to the doctor on her own. So I wait in the waiting room in case 
she needs me. 

So it's really about outlining what the person needs and letting them determine 
what the system looks like. It's not a one size fits all approach. It's what works best for 
that individual. And it's all about team work. So supported decision-making is nearly 
always done in a team, and that team can include parents and family members. It can 
include friends, support staff and advocates. And this team work model does a few 
things. It ensures that a person is getting a wide variety of perspectives. So perhaps 
you --you maybe want differing opinions so you can kind of decide what is best for 
you. It also allows the person to protect against abuse or manipulation because there 
are checks. There are other people who are also contributing to the conversation that is 
happening. So there are multiple layers of people when it comes to decisions. 

So let's apply this to mandatory reporting, for example. So how would you 
balance the legal obligation that you have under the law --you have a legal obligation to 
make a report in mandatory reporting, with the need to give the person some autonomy 
and control over this situation. Perhaps you would talk to the person about their legal 
obligation and ask if they want to be the ones that make a report. So tell them, I have 
certain --I have a legal obligation as a professional to make a report that you told me 
this, but how can we do this in a way that will be best for you. Do you want to be the one 
to call adult protective services and make a report. Do you want to create a safety 
plan. We can do that. Do you want me to help you try to identify housing, additional 


housing. Help them think through the consequences of making a report so that they 
know what to expect. 

And approaches to problem solving with those potential consequences. So if 
this happens because of the report that I have to make, here's what we can do. Have 
those conversations before a report is made, not after a report is made. Start having 
those conversations so that the person is very clear as to what is going on and what the 
approach is going to be moving forward. It's really important that they are included in 
every step of the process. So in many places, mandatory reports are made without the 
person ever knowing. And then they'll get a knock on their door from adult protective 
services and be completely blindsided by the entire situation. And so what really needs 
to happen is they need to be included in every step of the process so that they know 
what is going on as it is happening. 

So determining what the best response for them would be. Understanding that 
this report has to be made, that it's not something you have an option on, that you have 
to make a report. What information should be included in the report, what information do 
they feel comfortable sharing. All of that are conversations that you can have with the 
person before you make the report to kind of empower them to feel like they have some 
role in this decision-making process. Some role in what this is going to look like moving 
forward. So this supported decision-making model provides people with information. For 
example, in the mandatory reporting example I just gave, you were providing the person 
with a disability the information they needed to know how to move forward in an 
appropriate way. 

It provides them with the information they need to make decisions. It helps 
them weigh the information and make an informed decision. The goal is not to make a 
decision for them. It's to help them process their options and process what's going to 
happen and help them come to a decision or an ultimate goal. Another --it really allows 
for agreement and clarity in relationships in a way that other responses don't. It allows 
the person to make clear, affirmative decisions about the roles that others will play in 
their life. So, for example, going back to my sister, she has decided that my dad will help 
her with decisions around her day-to-day living, but I help her with medical decisions, 
anything to do with her benefits, anything to do with sort of the legal things that she's 
been dealing with. Those are sort of how we've delineated decisions. And she came up 
with that --with that process. 

And then when she has --when she has experienced challenges, she decides 
who's going to be the person that she goes to to talk about that with. And then maybe 
she brings other people in, but she starts with deciding who is going to be the first 
person that she approaches to talk about. So she provides really clear boundaries about 
who does what and who has what responsibilities in her life to help her with. And it really 
allows them to articulate boundaries in a way that people with disabilities often can't 
articulate boundaries. They're not given the opportunity to articulate 
boundaries. Because often decisions are made for them on boundaries. They are told, 
you cannot have a relationship, you cannot talk to this person after 10:00 p.m. They 
don't get to make boundaries and determine how they interact with other people. So 
supported decision-making really allows them to do that in a meaningful way. And make 
those decisions. 

They can clarify those boundaries. It's also a really good way to talk about 
affirmatively consenting and withdrawing consent and what that looks like. So perhaps 
they --the person decides they want you to help them with something, but then they tell 


you, actually, you know what, I changed my mind. Encouraging them to be able to 
withdraw their consent is also really important. And it teaches them about boundaries 
and about what consent looks like and what being okay with something looks like and 
that it's okay to change your mind about things. Which I think is really important. 

So I wanted to give an example, and this is an example that is really simplified 
for the purposes of this webinar, but it's just to outline sort of what responses would look 
like, right? So what would be the response to this example. Maria is a 30-year-old 
woman with autism. She lives independently in her own apartment with part-time aides 
that provide her with some services. Her parents live nearby. She sees them 
regularly. Recently at work, she met Steve who does not have a disability. He liked her 
and asked her on a date. She wasn't sure if she wanted to go on a date with Steve and 
wasn't sure how to respond when he asked her. So she asked her parents and her 
aides. What should their response be? So this is a really simplified example of how 
supported decision-making could play out in an interpersonal relationship. Again, it's a 
really simplified version for the purposes of this webinar just to see how would you, as a 
support person, respond to some of these initial concerns. 

I talk to a lot of support people, particularly family members, who have really 
struggled with some of these concepts because there's just this urge to protect the 
person at any cost. And so you want to keep them away from a person who you feel 
might be --might victimize them. So some traditional responses are, you know, things 
like Maria can't date, she's not capable of being in a relationship. Or what if Steve is a 
bad man who is preying on Maria. Or what would Steve want with a woman like 
Maria. So the initial response is often like suspicions on the part of the supporters. And 
so traditionally, parents, for example, would say, no, you can't go out with Steve. Or it's 
not safe for you to go out with Steve. He could hurt you. So we're going to protect you 
and say no. That's sort of the initial response that people might have. 

But what would be a supported decision-making response? What would be a 
way that her parents and aides could support --could address the conversation that is 
more supportive and less determining whether or not that date can even happen. Well, 
they could ask Maria more about Steve, make sure that she knows him, tell her why it's 
important to know about --to know more about him. They could ask Maria what is date 
is to make sure she has a clear idea of what happens on a date and understands what 
would typically happen on a date so that she has an idea of what is appropriate versus 
inappropriate behavior. Help Maria understand what is not normal for a date and the 
definition of normal might be different. So what is traditionally what is the realm and 
traditionally expected that are inappropriate on a date. 

Talk to Maria about what a relationship is. Make sure that she understands 
what Steve is looking for and if she feels comfortable with that. Make sure that she even 
likes Steve. We don't even know really if she likes Steve. We know she's hesitating 
about going out with him, but we don't know if she likes him and she's just nervous or if 
she really doesn't like him, in which case she should say no. Help Maria develop 
boundaries and expectations. So help her outline the boundary that she needs to have 
to be safe when she's going out on a date. Maybe she doesn't feel comfortable being 
alone with Steve. So maybe she wants someone to come with her. And wants to do sort 
of a group thing. Or maybe she doesn't feel comfortable being in a car with Steve. So 
maybe she wants you to drop her off and pick her up so that she doesn't have to be in 
the car with him. Determining what those boundaries and expectations are is important. 

And then talk to Maria about it being her choice and letting her know that she 


gets to decide whether she wants to go on a date with Steve. And at the end of the day, 
you will support her no matter what that decision looks like. That's some ways in which 
a parent or an aide acting as a supporter could start to approach the topic. But it would 
really be about helping her determine what her boundaries and what she feels 
comfortable with. So, again, that's just a really simplified example of how it can play out 
in interpersonal relationships. We talked about how it can play out in mandatory 
reporting. I think the biggest thing is just giving the person with a disability power back in 
their own lives and giving them the opportunity to really make decisions for themselves 
with all of the information that they need. Not denying them information because it's 
maybe uncomfortable in some way, but giving them the information that they need. 

So at the end of the day, autonomy equals safety. Autonomy empowers people 
like Maria to live fuller, safer lives that are self-directed. It encourages people to 
evaluate all options and possible consequences which is just a really positive thing for 
anybody to practice to really be thinking through consequences of actions when they're 
deciding whether they're going to take that action. Really having a process for going 
through what is considered an appropriate action and what is not and having a process 
for how you determine that is really helpful, I think. You would also give tools to people 
with disabilities to promote safe decision-making. So, again, for anyone, 
decision-making is more safe and more responsive to safety and security for the 
individual when they have all the facts. You can't make a good decision if you don't have 
all the facts. 

And so getting that information is a really important way of just helping them be 
able to make safe decisions because if they don't have all of the facts, they can't make 
an appropriate decision based upon incomplete facts. And it allows for checks on the 
role of supporters. So, again, one supporter is not making all of the decisions 
typically. It's happening as a team or it's happening with a few different people so that 
there's always someone who can check someone else's authority, which just makes it 
less --there's less of a power dynamic between the person with a disability and others 
when there are multiple others to spread that power between. 

And so I see there's a few questions in the chat pod that I want to respond to in 
the Q&A pod. I just also want to put some resources up here around supported 
decision-making. Many of these resources are not specific to victimization. They're more 
general about decision-making, but several of them really make a strong argument as to 
why supported decision-making makes an individual safer. Just in their lives 
generally. So I would encourage you to look at this. There's a lot of really great 
resources for supporters, for people with disabilities themselves, and kind of some 
suggestions for how to make this happen. 

And so I'm looking at the Q&A pod for some questions and I see one that is 
around the Olmstead decision. That's Olmstead. I just wanted to clarify that for the 
captioner and the interpreter so everyone's on the same page. But this was a court case 
that happened about two decades ago now. That said that people with disabilities 
deserve to receive services in the least restrictive setting. So it really kind of catapulted 
this idea of being served in the community and having community based resources 
which we're seeing more and more of today. And the question is, do we think that this 
decision impacted survivors with disabilities? Has it increased the formation of groups of 
self-advocates where people can learn how to speak up for themselves? 

I don't know if Olmstead is the reason that people have started to speak up for 
themselves more. I think there's been a lot of culture shift generally amongst people 


with disabilities and self-advocates where there's really been this strength that has 
come up through the self-advocacy movement and people with disabilities are taking a 
lot more responsibility for what happens to themselves. And they want to take that 
responsibility and they're protesting for that responsibility and speaking up for their 
rights as people. I think that that has led to a lot of groups and movements for people 
with disabilities to be a part of. And I think that that trend, that change in thought, we 
have started to see a shift from this view that people with disabilities are incapable of 
doing anything to a shift that people with disabilities are more like anyone else than 
most people ever thought. 

And with that shift, we've seen a lot of this shift in the beliefs around 
self-advocacy and the need for people to make their own decisions. I don't know to what 
impact that case had on that --on that shift. I think that case was a product of that 
shift. So as opinions change on people with disabilities, that case reflected those 
changes in opinions. 

Another question --are there any research on countries that have recognized 
supported decision-making and lower incidences of violence? I don't know of any. I 
know there's a lot of resources on supported decision-making in other countries. In 177 
countries across the world, supported decision-making is required by law to be the 
default option for people with disabilities. So it's definitely something that is more 
accepted in other countries than it is here in the United States. I don't know if there's 
been any research, but I would be really interested on hearing --in hearing from anyone 
who maybe knows of research that exists at the intersection of supported 
decision-making and victimization. I think a lot of the work that we have done on it has 
been very anecdotal and we've heard a lot of anecdotes and stories from people, but 
there's not very much hard research that I've seen and I've been really interested to 
hear of any that exist. 

And there's a question around working with survivors who have cognitive 
disabilities. The example that's given is dementia and memory loss. So how can we 
really support people who have those type of disabilities where there are clearly defined 
times where they don't necessarily have the capacity to make a decision and it really is 
talking to them when they have the capacity. So in moments of clarity for them, talking 
to them about what they need and what they want and having those agreements in 
place before there's a lapse in memory or cognition so that when something like that 
happens, you're prepared as a supporter to know what they want already. 

I think a lot of it is decisions that can be made in advance and discussions that 
can be had in advance. I'm not seeing any other questions right now which is --we're --
and we're just about out of time. But I want to thank you all so much for coming today. I 
did put my e-mail on the screen because I realize that I had all the rest of my contact 
information up here, but not my e-mail. So if you would like to contact me, please feel 
free to do so. I would really love to talk about how to apply decision-making to survivors 
with --of domestic and sexual violence with disabilities and I feel like we need to start 
having more in-depth conversations. This was meant to be sort of a primer on the topic 
and an introduction to the topic, but it's just the beginning of a longer conversation. 

So please feel free to contact me if you would like to have more 
conversation. If you wouldn't mind completing our evaluation survey, you can click on it 
by going to the link in the PowerPoint or --excuse me --the link that says webinar 
evaluation on our screen. And that is just a way for us to be able to gauge whether this 
presentation was helpful for you-all and continue to meet your needs. If you would like a 


copy of today's PowerPoint, you can find it in the bottom right-hand corner of your 
screen. Just click on the file and click download file. Also available in the bottom 
right-hand corner of your screen is a record of attendance. So if you attended today's 
webinar and you would like a record of attendance, you can download it there as well. 

And with that, I would like to end today's webinar. Thank you so much to 
everyone for attending and thank you to our great interpreter and captioner today. And 
we appreciate you all being here and have a great afternoon. Thank you. 

[ Webinar concluded at 11:26 a.m. ET ]