Organizer’s Forum – Topic – Supported Health Care Decision-Making
TUESDAY, September 16th
Led by Autistic Self Advocacy Network
The call will be an overview of ASAN’s work developing legislation to recognize supported health care decision-making agreements. Supported decision-making is a promising alternative to guardianship for people who may need assistance with health care decisions. Health care decision-making support can include assistance understanding health information and options, communication supports, and help with managing day-to-day health tasks.
Speakers
- Ari Ne’eman, President of the Autistic Self Advocacy Network
- Sam Crane, Director of Public Policy of the Autistic Self Advocacy Network
TUESDAY, September 16, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time
http://www.facebook.com/profile.php?cropsuccess&id=680444432#!/pages/Organizers-Forum/228971863811531?sk=info
Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time). A few other reminders about call etiquette:
- Speak one at a time
- Speak slowly and as clearly as possible
Co-Chairs, National Organizing Workgroup
- Call in number: 1-213-342-3000
- Code: 193134#
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Background
The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.
To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.
Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time). A few other reminders about call etiquette:
- Say your name before each time you speak
So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month. If you have suggestions for call topics or presenters for upcoming topics, please email them to jlehman7@gmail.com or dcoleman@cdrnys.org.
Looking forward to talking with you all!
Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup
Date: September 16, 2014
** THIS TEXT IS BEING PROVIDED IN A ROUGH DRAFT FORMAT. COMMUNICATION ACCESS REALTIME TRANSLATION IS PROVIDED IN ORDER TO FACILITATE COMMUNICATION ACCESSIBILITY AND MAY NOT BE A TOTALLY VERBATIM RECORD OF THE PROCEEDINGS. **
>> Jessica: We usually give people a couple of minutes to join. Maybe a bit more because of the number change if that is okay by you.
>> Male: Fine by me.
>> Female: That is fine by me.
>> CART Captioner: If you need me to identify the speakers they’ll need to say their name each time. Thank you.
>> Female: Is this the Organizer’s Forum?
>> Jessica: Yes it is, welcome.
>> Female: Thank you. It was a different number than the one on the website. But thank you.
>> Jessica: Yeah. Our conference system changed at the last minute. I apologize.
>> Female: That is fine. Thank you.
>> Diane: I’m on.
>> Jessica: Diane Coleman are you on?
>> Diane: Yes, I’m on.
>> Jessica: Great. You’re on the chat.
>> Diane: Yes.
>> Jessica: Thank you, Diane. We had 45 people that registered. Thank you for those of you that did that. Seems like the beast has quieted it down. We’re small but mighty group. Maybe others will join us as we start. Welcome, everyone. I’m Jessica Lehman. The Co Chair of the Organizer’s Forum along with Diane Coleman. I work as Executive Director of a nonprofit called Senior and Disability Action in San Francisco, California. And, Diane, do you want to introduce yourself?
>> Diane: Hi. I’m Diane Coleman. I’m with Not Dead Yet and I’m a member of the Steering Committee on the national disability leadership alliance which is an alliance of groups that are run by people with disabilities. And you can learn more about it on website at www.disabilityleadership.org.
>> Jessica: Thank you, Diane. Hopefully people know that we do have a chat room to make these calls more accessible so we have CART provided, thank you to NDLA for sponsoring CART. And if you want to log on and participate that way, you can type questions and comments in when we get to that part of a call and Diane can read those out loud or you’re always welcome just to call in and when we open it up to share your questions and comments that way. So the purpose of the Organizer’s Forum for those of you that are knew to this call is to expand and support community organizing in the disability movement. To really kind of talk about tools and strategies that have worked for different people who are trying to mobilize people with disabilities across the country and to talk about some of the issues that we face. We’ve been kind of alternating between some of the strategies or tools or thinking about outreach to different communities. We alternate that with really delving into the issues that we’re all looking at and today is going to be one of those issue based calls. I’m going to come back to the topic in a moment. We are always looking for new ideas for a topic. And if you have any please go ahead and e mail those to Jessica or to Diane. I want to remind people to speak slowly and clearly on the call. Which I always forget. And say your name before you speak. Please don’t put us on hold. We’ve some had problems withhold music. If you need to step way for a moment just hang up. You can always call right back in. And it is also helpful if you can mute your phone if not speaking. You can hit star six and mute your phone and you can hit star six again to unmute. So we recognize that these calls are always once a month. Always the third Tuesday at the same time. And we realize that a one hour call is not enough to delve into a lot of these topics and the kind of discussion we like to have.
We have on going discussion on our listserv which is organizersforum@yahoogroups.com. I would urge you to go on yahoogroups.com. Look for Organizer’s Forum. It is easy. We’re on FaceBook and you can look for Organizer’s Forum. Two words. Hit like so you will get notified. I apologize I just realize the call did not go on FaceBook but they generally do. And thank you to Kristin at the Center for Disability Rights in Rochester, New York, for getting all the calls, the information about the calls, the transcript and the recordings onto the NDLA website. Which disabilityleadership.org. You can look there if you missed information or you’re trying to find out about the next call.
I think I covered it. So with that, let me get back to our topic here. So we’re delighted to have a call today led by the awe and I just realized before I started the called I was going to do introductions deductions. Let’s do quick introductions. I start with the west host because there are people from here. When do we have from the West Coast? Nobody from my coast.
>> Janet: This is Janet from Texas council community centers.
>> Jessica: Where are you?
>> Janet: Texas.
>> Delores: Independent living in Haworth. California.
>> Jessica: Yeah. Anybody else from the west we can include the southwest. Colorado. Utah. Anywhere. Montana. All right. Let’s move to the midwest.
>> Rhonda: Rhonda with Disability Rights Ohio.
>> Jacqueline: Jacqueline. Southwest Center For Independent Living In Springfield, Missouri.
>> Jessica: How about the south? How about the East Coast?
>> This is [NAME] for the national council on disability.
>> Jessica: Great.
>> Diane: Diane with Southwest Kansas Independent Resource Center.
>> Jessica: Anyone on the call who has not yet introduced themselves?
>> [inaudible]: New York. Independence Center.
>> CART Captioner: I’m sorry. I could not catch that.
>> Male: Jessica, should we jump right into it?
>> Jessica: That sounds great. I’m going to wait until the other phone stops ringing. Our call today is on supported healthcare decision making. It is led autistic research and we’re fortunate to have author Ari Ne’eman who is President of Autistic Self Advocacy Network and Samatha Crane and I’ll turn it over to you to introduce the topic. One question as I do that, you want me to switch the conference line so that only you can be heard or since it is pretty quiet just leave it?
>> Ari: I think that we can just leave it.
>> Jessica: Sounds good.
>> Ari: Right. Well, thank you very much for that introduction. It is great to know who is on the call. My name is Ari Ne’eman. I run the Autistic Self Advocacy Network. I’m joined by my colleague, Samantha Crane, who Jessica mentioned is the Director of Public Policy for the Autistic Self Advocacy Network and resident expert on supportive decision making frameworks. This topic has been a high priority for ASAN in large part because so many of the areas in which we as disability rights advocates do advocacy getting people out of institutions, getting people out of sheltered workshops, voting rights, fighting back against unethical medical interventions or whole life sustaining treatment come back to issues of legal capacity. And for many people with disabilities, particularly those with intellectual and developmental disability, there is a significant bias in many service provision systems that funnels people into guardianship. Guardianship being a legal status in which one has deprived of one’s legal capacity of one’s rights to of one’s right to make decisions? Many families are told when their child turns child with a disability turns 18 or public school system that applying for guardianship should be the default expectation and that if they do not, they will not have the opportunity to participate in their child’s educational planning. This is inaccurate but it is something that places a number of a large number of people with disabilities down the route of guardianship. And this is also very significant issue in the context of healthcare. Where many clinicians will be reluctant to serve people with developmental disabilities who are not under guardianship for fear that they may be accused of not having been not having received informed consent prior to conducting procedure. As a result that can become very difficult with people with intellectual and developmental disabilities in particular but also people with disabilities at large to get access to quality healthcare if they want to retain their legal capacity.
Now, when we talk about healthcare decision making, you know, we’re talking about a lot of different things. We’re not just talking about, you know, decisions, about end of life care, or decisions on choosing between different treatment options. We’re also deciding when to see a doctor, which doctor to see, when to seek a second opinion, whether to seek treatment or follow recommendations of a particular doctor or explore other options from other clinicians. Decisions that are often complicated but people without disabilities and people with who are not presumed to lack a decision making capacity have the opportunity to make every day and really critically they have the opportunity to make those decisions with the systems. There is an expectation that, you know, if you do not have a disability but you need somebody to explain their relative merits of two different treatment options to you or, you know, what are the risks of a particular procedure or, you know, what processes you might want to go to, to find a healthcare provider. That shouldn’t imply that you don’t have capacity to make your own decisions. Nobody makes all of their medical decisions without support and advice. Not even doctors. And really what supported decision making is about is ensuring that people with disabilities also have access to the support necessary in order to make our own decisions in this discussion we’re going to focus on healthcare. It is a framework that also applies to finances, long term services and supports and many number of other areas and that needing that help should not imply that somebody is not capable of having the final say about critical decisions about their healthcare and critical decisions about their life. Policy of infrastructure needs to be put in place and that is a great cue to hand things over to my esteemed colleague, Sam satchel. Sam, take it away.
>> Sam: This is Samantha. As Ari noted earlier in the call I’m going to have to step away at around 10 to 2:00. So I’m going to give a quick overview of our supported decision making project, including our model legislation. And then I’m going to try and build in some time for questions before I have to head out. And as Ari said, we all need support. People without disabilities routinely get decision making support. Especially in major in cases of major healthcare decisions from their doctor, their pharmacist, informational materials, close family and friends and support groups.
But people with intellectual disabilities can face challenges which can include the need for accommodations and cognitively accessible information such as visual explanations of health issues, simplified materials. Assistance either from a trusted supporter or through technology with remembering things such as remembering to take one’s medication, remembering to go to a doctor’s appointment. And people might need support in order to communicate with doctors as well. Might have needs for either written communication or alternative and augmentative communication or assistance in interpreting their spoken their speech when talking to a doctor.
For anyone who is following the slides, we’ve kind of gone through the first few. We’re now at slide No. 7. On slide No. 7 we can see that the American Academy of Pediatrics, American Academy of Family physicians, American College of Physicians and the American Society of internal medicine have all agreed that at the age of maturity all people deserve to be treated as adults and experience the adult model of healthcare. And that includes people with significant disabilities who might need support in order to make their own health decisions. Unfortunately, next slide. Only about 40% of those with special health needs get transition planning services to help them transition to adulthood and people on the autism spectrum and with development and psychiatric disabilities are frequently not encouraged to take on adult roles. In fact, doctors frequently advise parents to seek guardianship of their child once the child reaches the age of 18 on the assumption that that is the only way in order to make sure that people can make the right healthcare decisions or in fact have the right healthcare decisions made for them.
This is because, next slide, the need for support is interpreted as a lack of ability to make decisions and people assume that if you can’t make decisions on your own, then you need someone to make them for you instead of that you need someone to help you and provide support.
When we have people funneled into the guardianship system instead of receiving the supports they need, they don’t get help with building the skills that they might not already have but might need in order to fully participate in their own healthcare. Doctors often [inaudible] support people including people with intellectual disability and conversations about their own healthcare and they may even refuse treatment to people with development or intellectual disabilities who don’t have a guardian out of fear that a person with IDEA or DD can’t have confirmed consent of their own care. We’re on slide 11 and we’re going to move on to talk about how supportive decision making is an alternative to guardianship [inaudible] in these kinds of situations. Supportive decision making is a system of supporting a person with a disability to make his or her own choices. It is an alternative to systems like guardianship in which people are making choices for a person based on their idea of what that person should choose or would choose if they weren’t disabled.
Supportive decision making is a really broad concept. It can include help with gathering and information understanding that information and communicating with people like doctors or nurses. And people are all different. So their level of support is going to change depending on what they actually need. And the level of importance of a decision. Some people, for example, might be perfectly perfectly capable of remembering to take their medication on time every day. They built that skill. But when it comes to having a complicated conversation with a doctor about a treatment plan, they might need someone to be with them in the doctor’s office to help them understand that information and help them communicate with the doctor. Next slide. The supports that support the decision making and healthcare can really support people with understanding, with making final decisions. We need to make sure that the supporters are trusted people. Family friends, spouse or a direct care worker. These are really important decisions. They’re very sensitive decisions and they help people the healthcare information can often betroth. So people need to really trust the person who is helping them make these decisions.
Going to skip ahead a few slides and talk to slide No. 15 and talk about, you know, how can we implement supported decision making principles? Well, people do support decision making all the time. Including people without disabilities. You can have an informal arrangement where you bring your spouse, your parent, your sibling or someone else that you trust into the doctor’s office to help you communicate with the doctor, help you keep calm when talking to the doctor. You can have someone who lives with you remind you to take medication.
These are arrangements that don’t really need any new laws to be made. The Americans with Disabilities Act already requires doctors to make this kind of reasonable modification to their own policies so a doctor could not simply tell a person with a disability, I’m sorry, you can’t bring your mother in to the doctor’s office because we don’t allow people to bring their spouses or relatives in to help them. Letting the person bring their mother or another trusted person in to an appointment should be considered a reasonable modification of a doctor’s policy in order to accommodate a person with a disability.
There could be some exceptions like if the doctor suspects abuse they might want to interview the person outside of the presence of the person that is supporting them. But in general, people should always be able to engage in this kind of informal support system.
And there are other kinds of supports. Next slide, 16. That people can already use through law that exist already. So a person might sign a HIPAA release. HIPAA is the law that prevents doctors from talking about your healthcare to random other people. You can sign a HIPAA release saying, you know what, doc. I love my parent or my spouse to help me with this health information. I want you to be able to talk to them about my health so here is a HIPAA release. Please feel free to talk to my spouse about my healthcare. You can also sign sort of the healthcare planning documents like a power of attorney which is allow Ace person to make decisions for you in an emergency or when you can’t do that yourself like, you know, you have gotten into a car accident and you’re unconscious and you can sign an advanced directive saying I want if I want there to not be a specific medication. If I have this illness, I want this medication. Not this other one. I would like to either stay on life sustaining car or not stay on life sustaining care. These kinds of documents already exist. Theoretically and I’ll get to this later. People with intellectual and developmental disabilities can find these but sometimes that doesn’t work out too well. And so the problem with these instruction is that in the past, courts have refused to recognize some kinds of documents like a power of attorney. If they think the person who signed that document didn’t have the capacity to sign, and by capacity we’re talking about someone’s disability. If the court thinks that the person doesn’t have the ability to make healthcare decisions independently. Because they have a disability based on their assumptions about what that disability means. They will say that the power of attorney is not responsible and they need a guardianship instead.
The problem with guardianship going to slide 17 is that the person with a disability can’t make any of their own healthcare decisions without the guardian. And this can mean the people become sort of disconnected from their care and fail to gain skills because if you can’t do something on your own anyway, why develop the ability to do something on your own? People check out. And doctors often don’t understand who has the authority to make decisions. Especially in cases like sterilization and withdrawal of treatment. Life sustaining treatment. A lot of states limit guardian’s ability to make decisions and doctors will still listen to a guardian when the guardian says hey I would like to give my son a vasectomy. Doctors don’t really understand that there are that there is that there are line that a guardian can’t cross. So people’s rights will be violated when a doctor acts on a decision by a guardian that they don’t have authority to make.
Also, there is limited oversight and ability to protect people from abuse in the guardian system. Technically guardianships need to be overseen by courts. But courts have slide 16 very crowded docket and access to the guardianship court system can be very difficult for a person with a disability that affects their communication skills or organization skills or ability to understand complex laws and procedures. Courts often provide way more broad guardianship powers than their than the people have even asked for. So sometimes you’ll have someone saying I only want a healthcare guardianship. The court will say, well, you know, why not just have guardianship over every aspect of the person’s life? They assume that the person if they can’t make a decision about one thing without a guardian, then they can’t make a decision about anything without a guardian.
And we just don’t think that guardianship should ever be be the correct response. People even if they need significant support in making decisions should be given that support instead of having their right to make the decision taken away.
I’m going to skip forward a little bit in the slides because of time constraint. But I’m going to go to slide 23 and discuss a little bit what we found when we looked into the history of guardianship or form in healthcare context.
Until now a lot of people have responded to the issue with guardianship by saying, well, let’s just reform guardianship. Let’s make sure that fewer people get placed under guardianship. Unfortunately, people who still need significant support are not getting helped by those kinds of reform efforts because it is not that these reform efforts are not focusing on how to provide support outside guardianship. They’re simply saying well we’re only going to put the most disabled people under guardianship. We want to make sure that even the most disabled people have people with the most significant support needs have access to supports that will help them exercise autonomy in the healthcare system.
When courts are required to consider less restrictive alternatives to guardianship, they often have avoided still impose guardianship in these cases because they believe that there needs to be a person who is accountable for supporting the person and they think that the person will will make the wrong decision if they don’t have their decision making rights taken away. And they don’t think that a person can engage in sort of alternative arrangements like powers of attorney because they’ll say if you can’t make a decision about your own healthcare without support then you can’t make a decision about a power of attorney without support. So those are going to be invalid, too, you just need a guardian.
We responded to this issue by developing model legislation that would recognize supported decision making agreements. We’re now on to slide 28. This is a new kind of agreement that is like a power of attorney but instead of appointing a person to make decisions for you, it involves appointing a person to help you help support you in making your own healthcare decisions. We developed this model legislation in collaboration with the quality trust for individuals with disabilities. The next slide.
The legislation gives individuals a clear option to create a recognized support relationship. Even people who might otherwise be declared by a court not to be able to execute a valid power of attorney. By allowing people to name their own support person, we can avoid costly and traumatic court proceedings and we can help protect people from the abuse or exploitation because these people have the final say in all of their major healthcare decisions. We don’t have a situation where a support person can override the decision of a person with a disability and impose healthcare decisions that aren’t necessarily in that person’s best interest.
We need to the ways in which a support person can help under our legislation, slide 30. Is that the supporter can access a person’s health information and communicate with their health providers. This is under an exception to the healthcare privacy laws. Basically saying if you execute a support support this decision making agreement then that is consent for the doctor to talk to your support person.
We have the agreement in relatively simple language so that people can understand what they’re signing, even if they have an intellectual disability. And we provide protection to doctors who follow the directions made through a supported decision making arrangement. We do that because we found that when doctors are afraid that they’ll be sued on the basis of providing care to someone who had not provided informed consent, they are more likely to say that they’re not going to treat someone who doesn’t have a guardian because they’re worried that the person will then come back and say rather that someone connected to that person will come and say that the person lacked the ability to perform provide informed consent and, therefore, treating the person was illegal. We want to make sure that doctors are protected if they follow a decision made with a valid supported decision making agreement. You can find the model legislation on our website. It is a toolkit for healthcare and transition to adulthood.
Slide 32. We design this model legislation by reviewing first reviewing both published guardianship decisions in the past decade to figure out why courts were awarding guardianship in contested cases and analyzing supported decision making legislation in other countries like Canada, Sweden and the United Kingdom. Our goal was to find out what were these barriers and as I mentioned many of those barriers are, you know, making sure that the courts want to make sure that someone is accountable for supporting the person and courts don’t believe that they’re viable alternative to say help a person make healthcare decisions.
We also wanted to make sure that we learned from the experience of other countries. So we wanted to look at supported decision making laws in other countries and figure out which ones work well. Which ones work badly. What we found was that the kinds of arrangements in Canada, in British Columbia within Canada were very popular because they allowed people to appoint a supporter through just a private agreement instead of the having to go to court. People to have go to court, then it is not any easier to get a supported decision making arrangement than it is to get guardianship and incentive to avoid guardianship goes away. We want to make sure this is as accessible as possible including to people who can’t necessarily access the court system.
I’m going ahead to slide 35. This legislation what we wrote will allow people to as I said will allow people to execute a private supportive decision making agreement. It lets the supporter assist in decision making including to doctors. The decision the support counts as informed consent and as you can see on the next slide, we have added many safeguards to prevent fraud and help make sure that these agreements are truly supportive agreements instead of agreements that will act will result in coercion or otherwise limiting the person’s autonomy. So we require that the agreement be witnessed and notarized so that a person can’t simply claim to be the supporter without actually getting the person to agree to name that person as a supporter. The person with a disability has to participate in decision making. The supporter can’t make the decision on their own. The most they can do is communicate the decision from the person to the doctor and if the doctor is concerned that this isn’t actually the person’s vision, the doctor doesn’t have to go along and in fact shouldn’t go along with a decision made by the supporter. Or that the supporter is claiming to communicate.
We minimize conflicts of interest by ensuring that a person’s treating doctor or a person with a major financial conflict of interest or a staff member in an institution can’t serve as the person’s supporter. We want to make sure that the person can name their spouse. Their parent. Their friends. Even a home support worker in the person’s own home can act as a supporter but if you’re making the treatment recommendations like if you’re the doctor and you’re making the treatment recommendations, you can’t also act as a support person. That is a conflict of interest.
On slide 38, we made sure that these decision making agreements were available even to people with very significant disabilities including people with communication impairments. The agreement unlike a power of attorney a traditional power of attorney is legally valid even if a court has will decide that the person can’t execute a valid power of attorney. We want to make very clear that this is available to everyone. Otherwise, we’re not reaching the exact people that we want to divert away from guardianship. The agreement retains a person’s final right to make decisions and, in fact, this is more protective of the person’s rights than a traditional power of attorney because the power of attorney often allows a person to make decisions for the individual without the individual’s participation in some circumstances. The healthcare supported decision making agreement does not allow you to do that. In fact, we encourage people to, you know, if you sign a supported decision making agreement and you also want to name someone to make decisions for you in case you’re unconscious, you’re going to have to execute another agreement because who you name as a supporter and who you want making decisions for you might not even be the same person. We want to make sure that people are very secure in knowing that they’re retaining the right to make all their final decisions in a supported decision making agreement.
Moving on to page 39. Slide 39. We’re keeping the role of doctors to make sure that people are still following good medical advice. So a doctor, if you don’t have a disability and you just go up to a doctor and you say I would like my tonsils removed for no reason. The doctor doesn’t have to do that. The doctor is not is going to say, no. I don’t think that is a good idea. You don’t have any reason to remove your tonsils. That is major surgery. Noway. Similarly, if a person with a disability, a supporter who is encouraging them to do something again to seek medical care that is inappropriate, doctors don’t have to necessarily abide by that decision. They on the other hand they can’t provide unwanted medical care that the supporter wants and that the person with the disability doesn’t want. Like regular healthcare contacts, you don’t get a a doctor doesn’t get in most situations to provide medical care that is unwanted just because it is a good idea.
And it also provides doctors to make sure that people have all the information that they need and make sure that people aren’t being abused or exploited. If a doctor is a mandated reporter in your state, they’re going to stay a mandated reporter and they’re going to have to report the suspected abuse or exploitation, including the exploitation by the supporter. They’re going to make sure they need to make sure that the person has all of the information that they need in order to make a medical decision. If they don’t feel the supporter is communicating that to the individual, again, they can report that and they can say, you know, I’m not going to perform this surgery unless I’m very confident that the actual patient wants me to do that.
The next steps in making sure that this legislation becomes a reality. We need to get this kind of model legislation passed in states. Right now we don’t have legislation supporting legislative agreement. We have some court cases that recognizes people’s rights to make decisions with support and avoid guardianship. But these relationships have mostly been informal and they’re not clearly defined.
The model legislation that we’ve proposed would make those relationships much more clearly defined and would let people feel secure that they they know that they have a supporter and they know the supporter will be able to do certain things. So we encourage people to ask their state legislator to say introduce and pass supported decision making legislation like our model.
Thanks, everyone. I wanted to open the room up for questions. Does anyone have a question?
>> Janet: This is Janet from Texas. So a person with a disability, if they want to do something we’re all out to make bad choices of things. I mean, so, how if they want to do something and it is not, you know, unethical. It is not dangerous or something like that. And that is what they want. And other people don’t quite agree. Say they want a tummy tuck. Something like that. So and then people are saying no you don’t need it. It is a lot of money. Whatever. How do we ensure that the person gets to make the choice that you want to make even if other people don’t agree?
>> Sam: Well, so a person can there are two ways. First our legislation allows people to choose their own supporter, right, if they have a parent or a care worker who has different values from them. They can say look, I don’t really you’re a great I value your presence in my life but I’m naming this other person as my healthcare supporter. Because I I just think that they share my values. The second thing is that the supporter doesn’t have to agree with the person’s final decision. They just have to be there. So if a person names you know, names a supporter like their sister and the supporter is there at the physician’s office, the plastic surgeon’s office, you know, helping them understand the risks an benefits of a nose job. And they do their job. They actually, you know, convey their risks an benefits and help the person communicate and the person decides, you know, I want a nose job. Then the’s opinion is not going to matter. It is the then the sister’s opinion is not going to matter. Their only role is as a supporter helping them communicate. They have no they have no right to veto a person’s medical decision.
>> Janet: Thank you. I appreciate that.
>> Sam: Sure.
>> Ari: Are there any other questions? One additional consideration that we’ve certainly run into because we have been approaching a number of states, advocacy groups and are working in partnership with them introducing this legislation is there are a couple of political constituencies that are likely to emerge in these conversations. Some of them are very obvious. Progressive disability rights advocates and groups run by people with disabilities. Self advocacy groups are likely to support such measures. More reactionary family or provider groups that are concerned by the prospect of people with disabilities, potentially making decisions at our adverse at our adverse interests and might involve them opting not to use a particular more restrictive form of service or, you know, in any number of other areas in which people with disabilities and providers and families conflict. Represent a potential opposition. We also have found a great deal of interest on the part of many clinicians in actually actively supporting putting in place supported decision making frameworks for healthcare. The reason for that is, they view it as a way of having a framework through which they can involve a supporter, be that person, a friend or a family member in discussions about a person’s healthcare with their permission, without violating HIPAA and without requiring that person to be under guardianship. If you’re a clinician and you have a patient who is not under guardianship but needs somebody’s help in order to understand the implications of various healthcare choices, then under the current system, you often face a considerable amount of pressure to force that person to go into a guardianship arrangement prior to being able to involve that person in to involve that supporter in healthcare and as Sam mentioned very frequently, things like healthcare proxies or other forms of authorizing third party to say play a role in your healthcare are not recognized because there is a perception that people with developmental disabilities might not have the capacity to execute them. And, so, just at a political level, in addition to the conflict between self advocate and progressive disability rights groups and less progressive disability groups, we found in many states an interest on the part of the clinician community, once this issue has been adequately explained to them in working with us to take this to state legislators.
Are there any additional questions, comments, thoughts, opinions, editorial?
>> Diane: I’m wondering about the what level of support is developing hopefully from the legal community that works on disability rights?
>> Ari: On the issue of supportive decision making?
>> Diane: Right. About the Bill and, in particular, especially.
>> Ari: You know, we have been engaging with a wide variety of groups and we’ve had some very positive discussions. Just as a starting point, the legislation was developed in collaboration with quality trust and many of you are familiar with the Jenny Hatch case. Jenny Hatch being a young woman with Down’s Syndrome who managed to successfully fight a guardianship that was imposed upon her in the state of Virginia and as a result of that managed to get out of group home and sheltered workshop. Many number of other restrictive things that isolated her as a result of the guardianship.
We worked actually with the lead council, Jonathan Martinez on the Jenny Hatch case in the development of this and I’m pleased to report this became public today that the administration for community living has actually just awarded consortium which includes both quality trust and the Autistic Self Advocacy Network as well as a number of other groups a grant to set up the national resource center on this and there is going to be an opportunity to continue to engage and continue to work to expand these concepts. Right now I would say that I think the legal community has a growing interest in support decision making frameworks but still learning about the specific frameworks they may want to put in place. One of the thing that we’re really encouraging is lets get supported position framework that work for particular areas in which people need support, whether that is healthcare, whether that is finances, and what have you. And let’s build a supported decision making system one piece at a time rather than saying well, you know, until we have a supported decision making framework that will work for every single person and every single context from day one, we don’t want to do anything. That kind of approach is going to leave us stuck with the status quo which is guardianship and which we know has horrible, horrible results for people and horrible, horrible outcomes. So we’re really urging and I think we have a lot of partners in the legal community who are joining us in urging policymakers to seek opportunities to place supported decision making in law, you know, step by step and in sector by sector. Did that answer your question?
>> Diane: Yes, that was good. Thank you.
>> Ari: Great. Do we have any other questions? Hearing none I would like to remind people that our model state exemption is available on the ASAN at autisticadvocacy.org and in addition to the actual legislation there is also a question questions and answers resource which gives more information for advocates, many of the advocates in the states that we’re working to introduce this legislation in and have found it very helpful in convincing state legislators or skeptical partners. This is an opportunity. It is an opportunity for us to push forward on an issue, guardianship and legal capacity, that really has been the root cause of many of the biggest problems we face in the disability rights movement. When we talk about getting people out of institutions, when we talk about getting people out of sheltered workshops, when we talk about the withholding of life sustaining medical treatment, we very frequently find the issues substantially intersect with guardianship and if we were able to restore people’s legal capacity and get them the support necessary to make informed choices then significant progress on those other thing would be made. We hope we have the opportunity to work with many of you on these issues. I know that Jessica will be sending out these materials after the call. I believe. And please don’t hesitate to reach out to us. We are excited and eager to partner with you.
>> Diane: I would just want to add on behalf of Not Dead Yet that we are very, very grateful to ASAN for developing this initiative and it is not an exaggerations to & as it moves forward that it will save lives is really important and thank you for what you’re doing.
>> Ari: Thank you, Diane. That means a great deal. Particularly coming from you.
>> Jessica: I want to extend a huge thank you to Ari and Sam and other self advocacy network to echo what Diane said. This is incredibly important work and we really appreciate you opening that up making it accessible for all of us here today. And we should be able to get the Powerpoint up on the website so people can look for it there. Disabilityleadership.org. You should have had it sent out by e mail and then the transcript of course will also be on the website. So if you want to pass it on to your networks, you’ll be able to access it that way. And of course we invite people to go on FaceBook or go on the listserv and share with the people who couldn’t be on today. What were some of the key points that really stood out to you. What are some of the thoughts that you’re having that other people need to know. I also want to thank our captioner. Thank you so much for your work today.
>> CART Captioner: Thank you.
>> Jessica: Please mark your calendars for next month, Tuesday, October 21st, the same time. We don’t have a topic yet but please let us know otherwise we’ll send that out in the next couple of weeks. Thank you again to everybody for being on.
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