Sunday, January 19, 2014

Autism Designation on Virginia Driver's Licenses, Not "Voluntary" for Many, Passes Senate Transportation Committee

This is the back of a driver's license. My Virginia driver's license looks almost exactly like this one on the back. It has a bar code on the lower left and a large bar code (with QR code-like markings) across the top. This license image is actually from New York because I could not find a VA image, but other than the state, mine looks like this. I have added the words "AUTISM" in red across one of the bar codes to symbolize what an officer might see upon scanning the code. The words AUTISM would not be visible unless scanned, but then, they would. If there are already two codes on the back of the license, will the AUTISM designation be another bar? Or will it be within the bars already there? Good question for those wondering how their licenses/IDs might look different enough to alert employers and others that their license is a "little bit different."


UPDATE: So, this thing is a little bit closer to becoming a law. If you put your child's or teen's dx on their license or ID, you need to plan for possible unintended consequences. Those of us who are adults, according to the many people I interviewed, have already figured out that we aren't doing that, so it will mostly affect people who can't decide for themselves. Here's the report from the LIS. All the delegates who voted, voted for it to continue to the full House Committee on Transporation. http://leg1.state.va.us/cgi-bin/legp504.exe?141+vot+H1903V0036+SB0367

 We are going to see a whole bunch of this in Virginia. DMV Sued over License Requirements for People with Disabilities  North Carolina discriminates against drivers with disabilities by subjecting them to unnecessary road tests and medical exams and arbitrarily restricting their driving, according to a federal lawsuit filed this week. 


Read more here: http://www.charlotteobserver.com/2014/02/20/4712289/dmv-sued-over-license-requirements.html#.Uwv4m4X_oqU#storylink=cpy

(Someone has pointed out that the title should read: "Not at all voluntary," but I was trying to give at least a little benefit of the doubt to the idea that this could be a voluntary bill, based on the language visible in the bill. The bill's language leaves much out of the picture of what would really happen if it passes.)

A bill, SB367, which would allow an autism or other diagnosis on driver's licenses and special identification cards in Virginia passed in the Virginia General Assembly Senate Transportation Committee Wednesday. It then passed the Senate unanimously. It will move over to the House of Delegates.

The bill, which was widely unknown in the Autistic community until a concerned parent contacted me about it, has been greeted with a mixture of responses from Autistics and people with disabilities, and quite a few parents. The dominant feeling is one of alarm.  

The biggest concern is that this designation on a driver's license is not completely voluntary. This has been made clear by the person who is spearheading the effort, Pam Mines. In an article on the topic, the mother of a 9-year old child said: "He's only 9, but he will drive one day. And before he drives, we want people to be able to look on the ID and see that he has autism," said Mines.

I have been in touch with both the bill's sponsor, Donald McEachin, and Pam Mines, and am planning to follow up on initial conversations with both.

Senator McEachin wrote to me and said that the bill is "voluntary." He told me that the designation would be a code on the back of the drivers license. "It is a code known to police that will alert them to the fact that the person has the disability." http://www.nbc29.com/story/24473883/law-allowing-autism-to-be-listed-on-ids-moves-through-legislature

But in an email with Mines, she told me "Minors can be signed up by their parent/guardian." She is hoping to sign her son up to make police and others aware that Autistics and people with intellectual disabilities can and do drive. Because the legislation is therefore, not actually voluntary, people who have IDs or driver's licenses before they are 18 may have an autism designation they do not want on their license or ID. If they are aware of this and want it removed, the bill provides that they can do so when they are 18: "Customers may add, modify, or delete information at any time. Such modifications or deletions will overwrite all previously provided information." Actually, they can't "at any time" if they are under 18, and then, with some of the difficulties that Autistics and people with other developmental and intellectual disabilities have, it may be more difficult for us to remove unwanted information in a timely fashion. If we are 18 or over and have a guardian, we still might not be able to have it removed. A lot of clarification and rewriting will have to occur to make this a voluntary measure.

If a person other than the driver or bearer of a license or identification card can apply for the designation, it is not "voluntary" for that person.

The bill also provides "an emergency contact program to allow customers to give DMV an emergency contact person and information to keep in their customer record to be made available to law-enforcement officers in emergency situations." Again, only voluntary emergency contacts would be safe for Autistics or people with disabilities in abusive circumstances. One would like to assume that most parents/guardians are "safe" people. In some situations they are not, and for that reason any legislation needs to protect such individuals.

Comments by people concerned about unintended consequences of the bill fall into several categories:

Employment application discrimination. Even if there is a code, if the license looks anything different from a regular license, savvy employers will know there is something different, even if they don't know what it is, and would shy away from hiring a person with the code. Since this will be pulbic knowledge, it will not be hard for employers to find out about it. The disclosing of a disability before and during the hiring process, without the applicant's permission, is a direct violation of the Americans with Disabilities Act.

Closely related to employment application discrimination is having to show ID for other reasons, and possible discrimination based on current stereotypes of autism.

Danger or discrimination for driver or person with ID. Depending on the situation, some parents have said that the ID card might make it worse for their family member who is a driver. Depending on the police officer, whether or not they have had training, whether or not they are willing to use the training when approaching someone who is Autistic, the potential for stereotyping and abuse could be worse. In some situations, it might be helpful, but many commenters agreed that keeping a disclosure card would be a preferable alternative. (More on disclosure cards below).

One person who is not at all part of the "autism world" said her initial response, if she were an officer and saw "autism" on an ID, would be to assume that the person was "like the Sandy Hook shooter and probably has guns under the seat." She apologized to me but said that was her first thought and I had asked her. I had asked her, and did not need any apology. I am trying to find out what a wide variety of people think. She said as a lay person who does not think much about autism, that's the first thing that came to mind.

Other comments included that an officer might not have time to look at a license anyway, that if someone was pulled over because of racial profiling, it would add one more stereotype to the profiling, that a non-autism related incident or accident might end up becoming "autism-related" if stereotypes of the driver or individual with identification "disclosed."

Say I get into a fender bender and it's the other person's fault. The police officer can not tell immediately whose fault it is, but gets our licenses and registrations. Then the officer scans my ID (are they going to scan them ALL? If NOT, then the ID already looks different!) Anyway, the officer scans the ID, looks at the cars, and decides it must be the Autistic person's fault because, um, they're AUTISTIC.

A concern that what is "voluntary" might become mandatory. Quite a few people pointed out that some legislation starts out as "voluntary" (and I have already pointed outr that this legislation is not voluntary for many people) becomes mandatory later on. A mandatory registry of Autistic people, whether drivers or not, would violate our privacy and discriminate against us solely on the basis of our disability. Further, since it only involves people with driver's licenses or DMV-issued IDs, it would unfairly select out those individuals who use that method of ID, perhaps prompting some sort of mandatory state registry for all Autistic people. The Commonwealth of Virginia is moving away from keeping registries of people with disabilities: 

HB 664 Blind persons; repeals requirement that DBVI maintain registry of persons in Commonwealth. 

Maryland is an example of a state that has a mandatory law regarding disabilities. Maryland law requires an applicant for a driver's license to disclose an autism diagnosis. The applicant then has to answer questions about their ability to drive. Ability to drive should be determined at the time of passing a driver's test. Maryland does NOT, please note, require that the disability be noted in any form, code or otherwise, ON the individual's driver's license. http://www.dsd.state.md.us/COMAR/getfile.aspx?file=11.17.03.02-1.htm:


Mandatory Disclosure
State and/or federal law may require disclosure of a disability, when public health or safety is an issue. One example is applying for a driver’s license with the Maryland Motor Vehicle Administration (“MVA”). Maryland law requires a person to disclose a disability and any medication treating that disability which may affect the ability to drive when submitting an application for a driver’s license. COMAR § 11.17.03.02-1(A)(20) specifically requires an applicant for a driver’s license to disclose if he/she has been diagnosed with autism (part of a list of 20 different medical conditions). While you may be able to duck under the radar by not saying anything and hoping no one notices and asks, the subsequent liability in an accident may also result in other consequences with the state, as well as providing a potential negligence claim by the other driver. - See more at: http://www.pathfindersforautism.org/articles/view/parent_tips_disclosure_-_how_and_when_to_disclose_your_autism#sthash.XbvpnsYS.dpuf
Comparisons have been made to people with diabetes. The language of the legislation says "Current law allows the designation of a hearing or speech impairment or a condition of insulin-dependent diabetes on a person's driver's license." The comparisons do not address the concerns of stereotyping of Autistics and people with intellectual disabilities because, in general, a person with diabetes or a hearing impairment does not garner the same negative attention that a person on the autism spectrum does. Thanks to organizations such as Autism Speaks, continued negative portrayals of autism in the media abound. If a person can drive (talking just about drivers now) or needs a non-driver identification card, it is not always necessary to disclose the diagnosis. That's not why the person needs the card. In  the case of diabetes, first responders may need to know that insulin levels may be affecting the driver's ability to function. In the case of a driver's license, Autistic characteristics that would affect driving ability would preclude the person getting a license in the first place.

Mandatory Disclosure
State and/or federal law may require disclosure of a disability, when public health or safety is an issue. One example is applying for a driver’s license with the Maryland Motor Vehicle Administration (“MVA”). Maryland law requires a person to disclose a disability and any medication treating that disability which may affect the ability to drive when submitting an application for a driver’s license. COMAR § 11.17.03.02-1(A)(20) specifically requires an applicant for a driver’s license to disclose if he/she has been diagnosed with autism (part of a list of 20 different medical conditions). While you may be able to duck under the radar by not saying anything and hoping no one notices and asks, the subsequent liability in an accident may also result in other consequences with the state, as well as providing a potential negligence claim by the other driver. - See more at: http://www.pathfindersforautism.org/articles/view/parent_tips_disclosure_-_how_and_when_to_disclose_your_autism#sthash.XbvpnsYS.dpuf
No Autistics or people with other disabilities seem to have been contacted for input during the drafting of this legislation.

A good alternative to having an autism designation on your license is  autism disclosure cards. For Autistics who don't want the "typical" disclosure card, these cards are a very good idea. Created by Lydia Brown at Autistic Hoya, they can be found at the Tool Kit of Resources from the Autistic Community: Autistic Hoya's Emergency Disclosure Cards Keep the card with your license and decide if whether or not you want to or need to disclose. With a disclosure on the license, there is no control over who gets the information, if you have  to show the license.


NEW: Facebook group for SB367. Please join and leave your comments. They will be useful for talking with legislators about this bill:  SB367Virginia Autism IDs

The full text of the bill, SB367, and its legislative history so far can be found here:

http://leg1.state.va.us/cgi-bin/legp504.exe?141+ful+SB367

 http://leg1.state.va.us/cgi-bin/legp504.exe?141+sum+SB367

SB367 passed the Senate. It will now cross over to the House of Delegates. I will post the dates for hearings and voting once I get them.

If you would like to contact legislators, you can locate your Virginia legislator here. Others can contact Virginia legislators as well; since the people who wants this law intend to have it be national at some point, why not.

NEW: The bill is now in a House Committee on Transportation subcommittee 3. Members of the subcommittee are: Hugo (Chairman), Scott, Villanueva, Yancey, Davis, Brink, McQuinn. Emails are:           
DelTRust@house.virginia.gov (chair of House Committee on Transportation)
DelTHugo@house.virginia.gov (chair of Subcommittee 3)
DelEScott@house.virginia.gov
DelRVillanueva@house.virginia.gov
DelDYancey@house.virginia.gov
DelGDavis@house.virginia.gov
DelRBrink@house.virginia.gov
DelDMcQuinn@house.virginia.gov


Senate: Virginia Senate Members

House: Virginia House (Delegate) Members

Another article about the legislation: http://news.fredericksburg.com/newsdesk/2014/01/16/bill-aims-to-help-police-id-people-with-autism/

Articles questioning the idea of a "voluntary" autism disclosure on licenses:

The Scarlet A: Why I Don't Want My ID to Broadcast My Autism

Autism and Disclosure: Is Virginia's 'Autism' ID Card Ethical?

"The anxiety expressed by autistic adults and parents of autistic children surrounding these bills should give our legislatures pause, for they have experienced, and will continue to experience, the effects of disclosure to those who may have an inaccurate, incomplete, or mistaken understanding of what the diagnosis means." Disclosure and Privacy

Something new, but maybe needed for explanation. For those who are looking at this, thinking that "low" functioning people are going to want something different than "high" functioning people. A link to the first part of my video/interview about not being able to speak at times. And, yes, I do have degrees with summa and magna cum laude on them and am not "not so smart." I also was in the 92nd percentile the time I took the LSAT. Hire me to do legal research! I put in the degrees and "smartness" for people who will say "Oh, she can't talk at times- not smart" and again, the fact that I have some degrees and took the LSAT does not mean I don't have trouble with things like talking or finding my car in a parking lot. Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences, Part I

and, why I comment on things in general. Need to protect children coming up. This is from something else but the caption says "Parent Defends Children with Autism."


9 comments:

Vlad Drăculea said...

I can see all kinds of fallout from this: kids feeling shame that the code is there and that they have to wait till they're 18 to get it removed; kids getting (or learning to make) fake IDs to show potential employers (and not even admit they have a driver's license); some kids having major arguments with their parents in which the kid comes away forced with a choice between privacy and being able to drive; etc., etc.

Venna said...

***TRIGGER WARNING: physical abuse by police officers*** Personally, I think, rather than creating laws which require mandatory disclosure of disability, why not educate law enforcement officers on how to properly interact with ALL people. They are trained to mistrust everyone and therefore any 'behavior' that is outside the norm is automatically looked at as suspicious.

*** I am reminded of a news story, out of Chicago I believe, where an autistic teen was brutally beaten by police officers because they thought he was 'gang banging' on the street corner outside his family's restaurant. In actuality, he was engaging in his evening routine of stepping outside, away from the noise and rush of the kitchen, to stim. As police approached him, he backed away, they pulled out their night sticks and he started shouting, repeatedly, 'I'm a special boy!' and as they began hitting him he ran back into the kitchen of the restaurant, all the while attempting to tell them he was autistic the best way he knew how. They cornered him and beat him until he was unconscious, all the while his family was attempting to explain he is autistic, but the police actually threatened to arrest them for interfering in a police matter. Hospital reports state the beating caused head trauma, fractured skull and the child needed dozens of stitches to repair the damage and was left with mental impairment. All because law enforcement didn't understand and automatically went to the thinking of, "this is a criminal engaging in criminal activity. ***

Rather than assuming criminality, perhaps change this thinking to, "Perhaps there is a hidden disability that would warrant a different approach in order to ensure everyone's safety.' A parent's desire to disclose for a child, I feel is more about the parent and them not thinking about the risk this may pose to their child, until law enforcement officials are trained how to properly interact with someone with an autistic diagnosis, that 'little code' could automatically create feelings of mistrust due to preconceived, erroneous notions regarding autistics and violence/criminal behaviors... That is NOT good, and we know that police are FAR from infallible.

BiolArtist said...

There is so much wrong with this bill, and this quote from the *parent* of an autistic child who initiated the bill says it all.

"He's only 9, but he will drive one day. And before he drives, we want people to be able to look on the ID and see that he has autism," said Mines.

I'm glad she presumes competence that her son will drive some day. That's one good thing. But I don't understand why she wants people checking his ID "before he drives" to "see that he has autism." Does she mean the sales staff at the auto dealership or rental car agency when he tries to get a car? The finance department when he tries to get a loan? The insurance agency when he tries to get car insurance? Why is it the business of any of these people to know her son is autistic? If he needs accommodations for communication, that's a separate issue he'd need to address before getting to the ID phase of the transaction. He could wear a medical alert bracelet or carry a card with information on his communication needs, as many autistics already do -- voluntarily. It's possible to ask for accommodations, if needed, without disclosing a diagnosis. (i often just ask people to repeat themselves because I have trouble hearing over noise. If I'm clumsy, I say I have a neurological condition, which is true but vague.)

Not everyone wants to publicize their diagnosis. Even the Americans with Disabilities Act doesn't require a person requesting accommodations to reveal the exact diagnosis, just their needs for accommodation. If his doctor revealed his diagnosis without his consent, it would be a privacy violation under HIPPA.

Sure, the card may have a code, but people in positions that check ID will learn which codes mean autism (vs. the other conditions, such as diabetes and hearing impairment). Does she expect him to pay cash all his life, or will he ever use a credit/debit card and be asked for ID when he shops? Does a store clerk need to know he has autism, and what will they do with that information?

BiolArtist said...

But why would someone mind telling everyone they're autistic every time they produce their ID? What's wrong with that? Well, thanks to a combination of "awareness campaigns" promoting negative stereotypes and sensationalized press reporting that accuses criminals and sociopaths of being autistic, a lot of people are afraid of autistics. Telling someone you're autistic may lead them to confuse you with a weapon-toting sociopath instead of excusing your awkward behavior or difficulty communicating. At the very least, it's a bully magnet--and any autistic who's getting a driver's license has probably been bullied at school already.

So you can see why an autistic might prefer to exercise their right to medical privacy. You may think that since it's voluntary, an autistic adult who drives could just decline to add the code. The problem is that if an underage autistic's parent has already put the code on their license, they might not even know what it is, let alone that there's a procedure to remove it. Most autistics, even those who would drive and have jobs, would find it very difficult to navigate DMV bureaucracy to do this. Nobody likes dealing with the DMV, but for someone who has problems with crowds and lines and talking to strangers, it's a far higher barrier than for the average person.

There's also the issue of autistics who are under guardianship as adults. This can happen when parents are overprotective, or when social services agencies don't presume competence due to stereotypes or poor communication. Even if the autistic person needs guardianship, the guardian may not allow the autistic driver to remove the autism code from their license because they don't trust the autistic's judgment.

BiolArtist said...

Even though the target audience for the autism code is law enforcement officers, they're not exempt from thinking in stereotypes--whether media-driven or based on limited experience with autistics. What if the officer assumes autistics are dangerous and acts accordingly? What if the officer mistakenly uses a condescending tone and accidentally escalates a situation?

Without significant education (which is not mandated by the bill), how is an officer supposed to know that this particular autistic they just stopped for a broken taillight will use echolalia and may have a meltdown over the rotating blue lights? Another autistic may have apparently normal speech but lash out reflexively if touched for a pat-down. An autistic driver (or autistic pedestrian with a driver's license) who's behaving oddly enough for the police to notice may not get a chance to present the ID with the autism code before the officer presumes they're a danger to themselves or others and tasers or shoots them. (This has been happening with frightening frequency to autistics, the Deaf, and people with mental illness.)

What would really help autistics (with or without driver's licenses) as well as others with mental, sensory, or neurological disabilities, is for law enforcement officers to have appropriate training to distinguish between harmless disability-related behavior and legitimate signs of impending violence. If autistics or others want to wear medical alert bracelets or carry information cards, this should be voluntary and customized to their exact needs.

BiolArtist said...

When I lived in another county, there was a service organization for people with brain injuries. One recurring issue was that people whose brain injury caused difficulty with walking, balance, and speech were often stopped by police who suspected them of being drunk in public or under the influence of illegal drugs. Many of them were arrested when they couldn't speak clearly and seemed intoxicated. The organization worked with local police to educate them about brain injuries and issued voluntary identification cards that explained that the individuals had neurological problems and weren't under the influence. After this program, police would ask for identification and let the person go if they had the brain injury card.

Let's examine the differences here:

1. The program is voluntary and initiated by the disabled person, not their guardian.
2. Local police were educated on the possibility of the "drunk" being sober but uncoordinated from a brain injury, and how to ask for confirmation.
3. Presenting the card is separate from their CA driver's license or photo ID.

I don't know why this mother thinks her son's driver's license should identify that he's autistic, and it troubles me that she is making this decision for him long before he's of age to drive. If she's concerned that the intersectionality of being black and autistic is a recipe for trouble, I can understand her concern. But I think her solution won't work the way she thinks it will. Her son, and others like him, are unlikely to get the chance to show ID before a cop profiles them for being neurodivergent while black. At least a medical alert bracelet would be right out there in the open so he won't get shot reaching for his wallet. The autism designation, whether on his ID or a bracelet, won't help unless the police are educated properly--and the education is what's valuable.

Just knowing how to distinguish autism from noncompliance could save lives. But expecting a code on a driver's license to accomplish that is misguided and prone to unexpected consequences.

Tammy Burns said...

Thank you for sharing this information. I plan to contact my representatives.

Paula C. Durbin-Westby said...

Venna and BioArtist, I would like to ask permission to quote from what you wrote here, to show to legislators. I am particularly interested in Venna's story about the incident in Chicago and BioArtist's discussion of how the desgination might not be able to be removed. I won't use your names (don't really know them anyway). Thanks!

Paula C. Durbin-Westby said...

I am saying something here that seems a bit unrelated but it's for people who are viewing this, from various stances on the bill. Here is a link to my video/article about not being able to speak at times. "High" and "Low" functioning are not :things." And, a reminder that not being able to speak at times does not make me "not very smart." I have two undergrad degrees, with summa cum laude and magna cum laude appended. I was in the 92nd percentile the time I took the LSAT. Hire me to do legal research. ;) http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_1996962.html

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