NRC-SDM Webinar Part II 05/14/15
Voice 1: Meera, you can start whenever you're ready.
MeeraAdya: Okay, great, thank you. Hello, everyone, and welcome to our webinar. My name is MeeraAdya, and I'm the director of research at the Burton Blatt Institute. And I will be facilitating today's webinar for part of the time. Our executive director will join us towards the end and be able to moderate some of the questions that we're going to be holding until the end.
Before we get started I did want to share information and answer some of the frequently asked questions. Today's webinar is being conducted using Blackboard Collaborate. It’s system makes it possible for us to conduct workshops over the internet from just about any computer with an internet connection and web browser. Unfortunately, there may be computer issues inherent in your systems that are beyond our control, which is why it is important for you to check your systems prior to our session, but our IT staff is available upon request to work with you either in advance of the session, or once the webinar begins we might be unable to troubleshoot technical issues. Do email us, though, as this is going on and we will see what we can do. The session is being captioned, to turn on captioning please collect the CC icon, it is in the upper toolbar and will open a separate window with captioning.
Today's session is also being recorded and archived for future use so you will be able to view it again.
A link to the recording and presentation will be posted on the National Resource Center for Supported Decision-Making website at supporteddecisionmaking.org. All one word. Please share this with colleagues who may have missed the opportunity to participate in today's session. Also, all participants’ microphones and phone lines are currently muted. If you have a question, please do type it in the chat area and we will be monitoring this. At this time we are advising you to close all other applications you may have
running on your computer because they may interfere with your successful experience today.
Okay, so those are all the technical messages that we have to get out of the way. Our presenters today are Barbara Brent, the director of state policy at the National Association of State Directors of Developmental Disability Services. Samantha Crane, the director of public policy at the Autistic Self Advocacy Network. And Jonathan Martinis, the legal director for quality trust for individuals with disabilities.
Barbara is a director of state policy for NASDDDS. She has more than 34 years of experience in publicly-funded systems for children and adults with intellectual and developmental disabilities. She has worked in state and county government as well in the private sector. Before joining NASDDDS in 2012, Barbara spent six years as a state director for the Arizona division of Developmental Disability Services, supporting more than 30,000 children and adults with developmental disability as long with their families.
Samantha is the director of public policy at ASAN’s national office. She's a graduate of Harvard Law School and has previously served as staff attorney at the Bazalon Center of Mental Health Law. Focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. LC, and as an associate at the litigation firm Quinn, Emanuel, Urquhart, & Sullivan, where she focused on patent and securities litigation. From 2009 to 2010, Samantha served as law clerk for the honorable judge William H. Yohn at U.S. District Court for Eastern Direct Court of Pennsylvania.
And we have Jonathan, who has over 20 years of experience representing people with disabilities in cases under the ADA, the Rehabilitation Act, the Social Security Act, and other civil rights laws. In 2013, he represented Margaret Jenny Hatch in the “justice for Jenny” case which held that Miss Hatch has a right to use supported decision-making instead of being subjected to a permanent, plenary guardianship. He also represented the plaintiffs in Brinn v. Tidewater Regional Transportation, the first case to hold that people with disabilities have a right to paratransit transportation on a next-day basis, and Winborne v. Virginia Lottery, which held that the lottery must ensure that premises selling lottery tickets, including private businesses, are accessible to people with disabilities. With those introductions, I will now turn today's session over to Jonathan.
Jonathan Martinis: Good afternoon, thank you so much, Meera, my name is Jonathan Martinis, one quick note, we recently moved offices and therefore our tech may be still a little sketchy, if you're having trouble hearing me please write a comment and I will speak up. Today's presentation is about moving supported decision-making from theory to practice. I am the project director of the National Resource Center for Supported Decision-Making. We're a federally funded organization funded by the Association for the Administration for Community Living in the Department of Health and Human Services, designed to help people and organizations change policy and practice to make sure that people have the greatest amount of independence and self-determination as possible, and one of our areas of emphasis, in fact our major area of emphasis, is making sure that people have the options to live independently without being subjected to overbroad or undue guardianships. That is, guardianships on people who are able to make their own decisions without the need for a guardian.
So that is what I think the backdrop should be of today's entire presentation. You're going to hear about ways to make decisions in the healthcare and Medicaid arena and I’d like to focus those in my presentation on ways to avoid guardianship. As we do that, I want to focus on several articles of faith, the first of which is this, every person with a disability, and in that I include older adults who may have or are considered to have cognitive impairments, have a right to participate in every facet of society. That has been accepted law since the Americans with Disabilities Act in 1990. The second article of faith is that people who have more control over their lives, who have more what's called self-determination have better lives. That is not opinion; that is fact from over 40 years of studies. People with more self-determination are healthier, they’re better employed, they’re more independent, they have greater community integration. Third article of faith is that guardianship by definition, especially guardianship on people who are, who don't need it, are able to make their own decisions, has a negative impact on people's lives. You are less healthy, less independent, less well employed. The fourth article of faith is that supported decision-making is an alternative to guardianship. It's a method of making decisions without disabilities, where people-- without guardianship, pardon me-- where people with disabilities make use of trusted family, friends, professionals, to understand the choices they have to make so they can make their own decisions without the need for a guardian. And lastly, that supported decision-making when used as I just described it increases self-determination. That people who use that have access to those benefits of having more life control.
So with those in mind, let's talk about what happens to people with disabilities. Is that in the healthcare field the studies have shown from the U.S. Surgeon General that as a general rule, people with disabilities have more medical conditions but are usually either over or undertreated so they don't get appropriate healthcare. And when we look in the guardianship arena, the studies have shown that a large percentage of people are referred for guardianship by medical professionals. So people aren't getting appropriate treatment and medical professionals are a major source of referrals for guardianship. I mean, think about it, think about why a medical professional would do that. Think about the obvious questions that would come that maybe you've heard from your friends or family members who’ve gone to the doctor. And the doctor says things like “well, this person may not be able to consent to this treatment, so who's going to sign the consent form?” Or, “who am I going to make sure pays for this treatment?” And all of that is about informed consent. I'm sure everyone has heard that phrase. Well, I liken informed consent in the medical field to capacity in the guardianship field. And it’s the lynchpin, a person should not receive medical care unless they give informed consent. Unless they receive and understand information about the treatment, they understand the treatment they will be receiving, and unless they are able to exercise choice to receive that treatment. And from that you can see why a doctor, who is uninformed about things like supported decision-making may over-rely upon guardianship. May recommend guardianship because they are concerned a person can't give informed consent. Well what we need to know, what people need to understand is that supported decision-making can be used in every decision, and especially in the medical field. I mean, think about it, if you've ever gone to a doctor and heard a whole bunch of medical jargon about your diagnosis and you ever said “explain that to me in English, please,” you ever said, you know, “I don't understand, I need some more information,” you've engaged in supported decision-making. The difference is that people without disabilities when they do that, when they ask for more information so that they can get the information they need to give informed consent, people without disabilities are considered wise or showing good judgment to make sure they understand. A person with disabilities though, when they ask for more information, then by and large from what we've seen from the numbers are considered weak or dumb or in need of guardianship. Not wise like people without disabilities.
So realize that, that every decision can be done with support. Things can be explained to people. And that capacity to give informed consent, it's along a spectrum. We all have
different levels of capacity. But all of us, if we understand and are given the opportunity to understand the treatment in front of us, can engage in informed consent. The shorthand for that is a person can have capacity to consent to a flu shot while not having capacity to complete a credit default swap or to change a transmission in a car. Or to perform surgery. The difference is for medical decisions, you need to understand them.
So what we need to do, I think, and I think this webinar is going to do is, I hope what it's going to do, is galvanize support for making sure that supporting decision-making is used in the medical field. That medical personnel realize that supported decision-making is a legitimate option so that people with disabilities can make their own decision in the medical field. So that they don't have to be asked the question, well, who is signing your papers for you? Or who is, who are we going to make sure is responsible for this? The person is and should be responsible for decisions in their own medical care.
Well, how do you do that? You know, how can a person with disabilities who doctors have for years have thought aren't able to understand, how can they understand? How can we use supported decision-making in medical field? Well, think about a HIPAA release. Every time you go to the doctor, each and every time, you have to sign a release saying what information the doctor can share with other people. You are giving the doctor permission to discuss your medical care with another person. Well, what is supported decision-making? Supported decision-making is just involving another person or people in the decision-making process so that you, the person, can understand the situation and the choice you have to make, so you can give informed consent.
So why not use the traditional HIPAA release, the one you're already signing? And why not make a small change to it? To say that not only can the doctor give information to a third party, but can include giving that information for decision-making. And just like that, when the doctor gives someone else-- when you give, pardon me-- when the person gives the doctor permission to share information about your healthcare with that
person for decision-making, you've taken a HIPAA release and you've created a supported decision-making release. You have created a permission to bring someone else into the decision-making process that you designate. The person who you want to help you. You can make your own form or you can use models that are out there. On your screen is link to one that Samantha's organization, the Autistic Self-Advocacy Network, has developed. You can simply bring that to the doctor and just like that, you create a supported decision-making form.
And you're going to hear, and I've heard this, so I'm sure anyone who does this will hear it too, a doctor or healthcare person will say bringing a third party in, doesn't that violate doctor-patient confidentiality? The answer is of course not, because there's no violation of confidentiality if the person gives permission for the other person to get that information. If I give the doctor permission to share information with my friend, there's no violation of confidentiality because I've okayed it. Another way of looking at it is it's the exact same thing as when a person who is Deaf or hard of hearing uses a sign language interpreter or uses real time captioning. The interpreter is not violating confidentiality, the interpreter is the seen as an accommodation for the patient, the same should be seen in the supported decision-making field. There are other options, you don't have to just go with supported decision-making, I think sometimes doctors are more comfortable with that which they're familiar with, like advanced directives or powers of attorney. But ten years ago they weren't as popular. It's my hope that eventually supported decision-making becomes as commonplace as the advanced directive or power of attorney. Both of these are legal forms where a person voluntarily designates someone else to either make decisions for him or her or to help make decisions with him or her. And with those forms, once again, you can go to the doctor and you can say, here, here is my permission to involve this person in the decision-making process.
Well, it doesn't just have to be giving up rights, the person doesn't have to say I want my mother or my brother or my friend or my professional colleague to make decisions for
me, you can create an advanced directive with language like you see on your screen right now that creates a supported decision-making relationship within the advanced directive. I mean, think about it, what you're doing is giving permission to have a third person be part of the process. So language saying my agent will work with me to help me understand the choices I have to make, so that I can be the final decision-maker and I can make health decisions to the maximum of my ability. The same document can include language that says if you're unable because of a medical situation or God forbid an accident to make decisions yourself, that person can become the decision maker, but in all other situations that person is your assistant or your supporter, and just like that you've created a legally-recognized supported decision-making agreement.
Another way is through the person-centered planning process. It's always been my position that person-centered planning is the same thing as supported decision-making, we are just talking about different shades of the same color. Person-centered planning has been a popular phrase for a number of years. It just involves planning with a person's medical care. We see it in the Medicaid field and the Medicaid waiver field, I'm sure Ms. Brent is going to talk a lot about this, but think of it this way: Instead of having a person surrounded by professionals telling him or her what’s going to be done to him or her, in person-centered planning the professional are working with the person to help the person understand the choices he or she has to make in his healthcare. What types of services and supports does this person want, where is the person going to get them from, who is going to provide them? So the person can understand, and the person can make that decision.
What we do there is we see a change from what used to be a directive process-- I will tell you what you need-- to a participatory process where the person can say, “this is what's important to me. This is what I want.” And the others can say, “here are some options about how to get there.” And the person can make the decision about how to get there. Doesn't that sound like supported decision-making like we described it? Doesn't
it sound like other examples of supported decision-making like you've heard about it, especially if you were on the last webinar, and if not I recommend you go checking out the archive of that. Because that sounds just like a student-led IEP or thay sounds just like informed choice in vocational rehabilitation, where instead of decisions being made for or instead of a person in the critical areas like education or employment, decisions are made with the person, with the intent of letting the person make the final decision and chart his or her own path.