Showing posts with label Policy. Show all posts
Showing posts with label Policy. Show all posts

November 17, 2015

Improving the Democratic Process with Open Dialogue, 140 Characters at a Time

Exploring Social Change Through Public Policy

While working in the legislation and public affairs office of a state program, I regularly monitored thousands of social media accounts of public officials, government and nonprofit organizations. While managing the agency’s social media accounts, I also saw state policy develop on a daily basis. One voice emerged through Twitter that was continually surprising: A California legislator was using the platform to engage constituents, media and other leaders with personal and reciprocal dialogue.

I wanted to know why his approach was so reasonable and why his level of was able to maintain a remarkable level of dedication. His dedication is underscored by his attendance; in fact the Contra Costa Times reported that Assemblymember Gatto was present to cast a yes or no vote in all 5,897 roll calls last year. He was the only member of the legislature to not miss a vote. (Orlov, 2014) If an innovative approach to the legislative process was possible then there might be hope for genuine transformation of public policy. I had to talk to Mike Gatto.



Gatto's work spans LA county and the state capitol.

I called Gatto’s Capitol office and then sent a follow-up email to ask if there was any chance I could schedule time with the Assemblyman. I then sent Mike a short request via Twitter to ask if he would be willing to talk with me. In less than two minutes the Assemblyman replied personally through Twitter and within two hours of my phone call to the office, Gatto’s staff responded with a scheduled for a face-to-face interview. This level of responsiveness is unparalleled within a government office: I’m not a constituent, registered lobbyist, member of the media, or a public official yet I received an immediate response to my inquiry and the Assemblyman generously gave up his during the busy part of a legislative season is generous to accommodate an academic project.


A Basic Background on California Assemblymember Mike Gatto

Mike Gatto is a native and lifelong resident of California’s 43rd assembly district, which includes Glendale and Burbank and surrounding areas. Education played an important role in Gatto’s life, his father Joseph Gatto, was a revered arts educator, who taught for many years at the school he co-founded, the Los Angeles County High School for the Arts (LACHSA). Mike Gatto describes his father as an Army veteran, beloved arts educator, craftsman, author, and grandfather (Bloom et al., 2014). After attending schools in Glendale, Los Feliz, and Silver Lake, Mike graduated with a degree in History from the University California, Los Angeles (UCLA), and Loyola Law. He left a flourishing career as a small business attorney after successfully running for a vacant assembly seat in his district in June of 2010. He has been serving in the California Assembly for nearly five years has been an integral force in fiscal policy and protecting consumer privacy.


Why Public Service?

When I sat down to talk with Mike Gatto, we connected right away on the commonality of raising two young daughters, the photos of his family are prominent in his office and I carry photos of my daughters in the covers of my notebooks and legislative binder. I shared how my children underlie my passion for enacting social change and how I became familiar with Gatto’s legislative work and communication through my prior work. I then asked him why he was driven to serve in the assembly, and what led him to public service. Gatto answered that he had been frustrated for a long time with the status quo and felt there was a better way for the government to operate, he eventually had a shift in his thinking and he felt it was wrong to criticize the system from the sidelines. Instead, Gatto says “if you really care about something, you care about changing the system, it’s best to get involved” (Gatto, 2015). He left a good job to run for office because he felt to focus on laws that benefit the public at large, as opposed to special interest groups.

I asked what issues evoked passion from the Assemblymember. I was surprised by the source of Gatto’s passion; a topic he admitted that usually makes people’s eyes glaze over: financial reform. Mike Gatto is passionate about budget reform and has a “love for all things fiscal” (Gatto, 2015). Why would budgetary matter invoke this much fervor? Gatto describes the relationship this way: “I think the biggest that way a society expresses its values is what it chooses to spend money on” (Gatto, 2015) This idea is pivotal for those of us who tend view economic forces as separate from social ones. Economist Richard Steinberg echoes a similar sentiment when he defines economics as: “The study of choices under scarcity” and insists that allocating funding (a scare resource) is an exercise in choice, denoting what is valuable (Steinberg, 2006).

Gatto further stressed the implications of managing public funds; “we must never forget it’s our money, it’s everybody’s money. It’s not the government’s money, it belongs to all the taxpayers, all the people in the state and so I think reforming the process and making sure we don’t spend it foolishly is the biggest thing I think we could do to leave a better government for the next generation” (Gatto, 2015). This process reformation is similar to the broader social aspect of economic thinking and creating “bottom-up policy” that author David Colander says is changing the current landscape of economics (Colander, 2012).


What is Getting in the Way?

I wanted to know how serving in the assembly for five years had changed Gatto’s outlook on the ability to affect change. The inequities of power held by special interest groups stands out as a depressing reality. Gatto says that there are positive initiatives he has taken on and that his colleagues and pursued that have been stifled by special interests: “You get and education very fast on how powerful certain special interest groups are and people. You’re always going to be affected by money and power and things like that, but when it gets too profound in one direction, then you have to say “something’s wrong” (Gatto, 2015).

There seems to be increasing evidence something is, indeed, wrong. Ordinary citizens are being shut out of the democratic process due to the power and manipulation used by special interest groups is. As economist Lester Salamon points out, it becoming increasingly difficult for citizens and nonprofits to have a voice advocacy, in view of the 2010 Supreme Court ruling in Citizens United v. Federal Election Commission, which removed all restrictions on corporate financing of election campaigns (2012, p. 38).


Shifting Power to the People

Engaging members of the public is to participate and be heard is a key Mike Gatto’s approach to shifting the balance of power. Gatto’s approach is not just symbolic; he has implemented changes suggested by people responding to legislation proposals. Gatto says that allowing people to truly be heard is mutually beneficial: “A lot of good ideas come to you from members of the public. A lot of people propose changes to my bills and they’re actually good changes, so I like to think that I’m better for it” (Gatto, 2015)
Gatto’s legislative work has made headlines as he drafted the United States' first bill drafted by the public on a wiki-style Web page (KPCC, 2014). Gatto is again utilizing this new approach of crowdsourcing to shape and increase the level of transparency in the legislative process. Gatto described the reasoning behind using this methodology to create AB 83, a bill that would increase security requirements and accountability for businesses that collect personal information from consumers:
“Too often, legislation is drafted with little or no input from the everyday Californian. In contrast, ‘crowdsourcing’ a bill on the Wiki platform allows for a fully transparent brainstorming, drafting, and editing process that incorporates ideas, experiences, and concerns from a large group of people. The collective wisdom of the public determines the final product.” (Simmons, 2015)

A Case for Optimism and Action

The philosopher Paulo Freire differentiates how dialogue requires an equal dynamic, he says that dialogue “is and act of creation; it must not serve as a crafty instrument from the domination of one person by another. Dialogue cannot exist without humility. “ (Freire, 2000, p. 89). I am inspired by the power of dialogue (even dialogue in 140-character increments). Assemblymember Mike Gatto has been able to use the Twitter as a platform to communicate personally and truly listen to others’ ideas with intention and to engage in reciprocal dialogue, not just to further a specific political agenda.

As someone who feels called to enact social change, I asked Mike what wisdom he had for change agents and I recognized the power of passion combined with truth: “If there’s an issue you care about, people will see that. They will see it by your passion, by the tone of your voice and the look in your eye. They will see all of those things that you care about it. People who care about issues are very powerful spokespeople for them” (Gatto, 2015).


My conversation with Mike Gatto left me with added optimism on the possibility to enact social change. Reflecting on his terms in the assembly, Gatto says “With a lot of things I’ve been just profoundly impressed with the ability to do good.” He mentioned the positive impact that one legislative initiative had, a bill he passed that reduced the red tape for certain kinds of small businesses in the food industry. When talking about this bill, Gatto says “I still get stopped on the street by people saying ‘You changed my life. I’m a single mother and I wanted to create a baking business and I was never able to do it and there was all this red tape and bureaucracy, but you changed my life’.” (Gatto, 2015).



References

KPCC. (2014, September 14). California's first wiki bill vetoed, but Assemblyman Mike Gatto says he plans to organize more. Retrieved May 24, 2015, from KPCC: http://www.scpr.org/news/2014/09/20/46857/california-s-first-wiki-bill-vetoed-but-assemblyma/
Bloom, T., Wynter, K., Pamer, M., Wynter, K., & McDade, M. (2014, November 12). As Memorial Highway Is Named for Joseph Gatto, LAPD Asks for Tips in Unsolved Killing. Retrieved May 23, 2015, from KTLA: http://ktla.com/2014/11/12/joseph-gatto-lapd-to-re-offer-50k-reward-in-unsolved-killing-of-assemblymans-father/
Colander, D. (2012, January-February). Solving Society's Problems from the Bottom Up. Challenge , 55 (1), pp. 69-85.
Freire, P. (2000). Pedagogy of the Oppressed. New York , NY: Bloomsbury Academic.
Salamon, L. M. (2012). The Resilient Sector: The Future of Nonprofit America. Washington D.C.: Brookings Institution Press.
Yeates, K. (Interviewer) & Gatto, M. (Interviewee). (2015, May 13). Improving the Democratic Process with Open Dialogue, 140 Characters at a Time [Interview transcript]. Retrieved from https://docs.google.com/document/d/1d0-e9X6FfSF7f5o13qq34zUQuwK3Ba9r2WjytSIVwkg/edit?usp=sharing

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INTERVIEW TRANSCRIPT with Assemblymember Mike Gatto


May 13, 2015



K: What inspires your dedication, your approach—why civil service?
M:  Well, you know, the reason why I ran for office initially is because I found myself waking up every morning and shaking my fist at the newspaper, feeling like there was a better way to do things. And then at some point I kind of had a shift, I thought, If I am going to criticize something then I’m not really a good human being unless I get involved myself. It’s very easy to ‘Monday morning quarterback’, or whatever they call it, to sit there and criticize something from the sidelines. But if you really care about something, you care about changing the system, it’s best to get involved. So that’s what made me run for office. I left a much…..I left a very good job and I, but I did it because I really feel like we need more sensible laws and things. We need lawmakers who are going to focus on laws that benefit the public at large, as opposed to special interest groups.
K: Is there anything in your background or different sorts of policies that ( M: gets you excited? ), yeah your passion:
M: Oh gosh, things that probably bore a lot of other people. I mean, I am very much into budget reform, I love all things fiscal, and you know—I know a lot of people’s eyes glaze over when you start talking about things like this. But; If you think about it, I think the biggest that way a society expresses its values is what it chooses to spend money on. And we in California, we’ve chosen a lot of things over the years that are probably not that wise to spend our money on, and we must never forget it’s our money, it’s everybody’s money. It’s not the government’s money, it belongs to all the taxpayers, all the people in the state and so I think reforming the process and making sure we don’t spend it foolishly is the biggest thing I think we could do to leave a better government for the next generation.
K: How has it been for you balancing the committee for consumer privacy, how has it been for you to balance the amount of transparency and engagement and you’ve put forth personally while also being so aware of protecting people’s privacy?
M:   Sure, you know it's a very fair question. You know I think the key thing with privacy, just like much else, it’s consent, right? it’s freedom. If people choose to go on Twitter or Facebook and say “I’m at this wonderful event” or gosh, I mean there’s people on Twitter and Facebook who tell us what they had for dinner that night, then they are consenting to give up their privacy. But none of us would ever say that you have to do that, right? None of us would ever say that it’s right to get into someone’s personal data that they don’t want out there, or to force people to have to disclose things that they don’t want  disclosed. So that’s where I draw the line, it just comes down to consent and freedom.
K:  Has it been difficult, at all, with having that much engagement or sustaining it?
M:  Sometimes, I mean— I think there’s a of people who don’t understand various media. Twitter for example, is something that because it’s 140 characters at a time, it’s very rapid. For example I could compose a tweet right now while we’re talking and it would probably be very rude, but it wouldn’t necessarily detract from our interview. If that makes sense? It’s a good, quick way to stay engaged with the people who voted for me. That’s the way that I view it.
K: Yes, and I think it’s amazing the way that you’ve used it. You’ve leveraged it to respond to, even,  people with small criticisms on proposed legislation, to say: “oh ok, well maybe we’ll consider folding that in”. It’s almost as if you’re so reasonable, there is just this cognitive dissonance—does that make sense? [M: Yeah, sure, I understand].
K: Is there anything else about you, from your background that has shaped how you’re able to have such a unique delivery or methodology with the way you approach things?
M:  I made a promise to myself when I got elected that I would never forget the perspective of the voter. There’s a lot of people, that the minute they go from being a voter, to being somebody who is voted on, or voted for, they lose that perspective. They forget what it’s like to be someone who wants your tree trimmed and you call the service and you’re on hold for 45 minutes, and then they give you some answer that it will be trimmed in 30 years. Or, you want a pothole filled. That experience stinks. That type of lack of responsiveness, when you write an elected official, when you call an elected official, when you call your government and they don’t respond to you and they’re not reasonable; it drives us crazy. Right? It’s like, I’m paying for this person’s salary, they talk about efficiency, and they’re supposed to listen to my viewpoint- and yet they’re not listening to me. So I promised myself I would never be that person, that I would never forget what it’s like to be that person who was calling about something that really bothered me or was really engaging somebody somehow. So I just want to be responsive, I just want to respond to people.
By the way a lot of good ideas come to you from members of the public. A lot of people propose changes to my bills and they’re actually good changes, so I like to think that i’m better for it. and I hope that I’m also making people...I like to surprise people and make them realize that not all of us ignore people. If hope that makes sense.
K: Yes, I think it really is thoroughly surprising and I probably haven’t bugged your office before because many of my issues just don’t happen to be the overlapping, on the specific committees that you work on.
M: I did sign the letter in support of the Lanterman Act.
K: Yes, and I called your office to thank you for your support, though my reps still haven't signed on to support it yet. That is a conversation I would like to have. I had brought both my girls out several weekends to volunteer for our local campaigns and place lawn signs and they grumbled about “why are we doing this?” and I tried to approach a conversation about civic duty and engagement.
M: That sounds like a good mother.
K: How do you define or prioritize the issues or forces that are happening within your district?​
M: Geez. Well one way to prioritize it, of course, is sheer numbers. To see how many people write in on an issue. Another other way to prioritize it is the passion of the few people who write in. You could occasionally have a problem that is very vast but only a few people care enough to write about it. And then the converse is also true. You could also have a problem where 70% or 80% of the population feels one way but then 20% is very vocal. So you really have to have a good compass. You have to be in touch with a lot of people in your district to have a sense of how the district really feels. And, you know, sometimes you also have to say the district, in effect, elected me to be their voice, and I might not have taken a poll on this, or even an informal survey, but I’m going to do what I feel is right for the people in my district. And It’s kind of easy because I grew up in my district. I was born and raised there so  I feel like I’m still in touch with all the people who populate it.
K: Was your family originally from there? [your district]
M: My dad moved to LA when he was about 10. My mom did when she was about 20. But I was actually both born and raised in my district. And my dad had lived there, my dad lived in the district from 1968 to 2013, he passed away so… yeah, I’ve got some pretty deep roots there which is good.

K: How has your outlook on public service or the ability to make change—how has that been influenced in your terms in the Assembly? What has it been now? (five years) [said simultaneously].
M: Yeah, five years, well it will be five years in June. With a lot of things I’ve been just profoundly impressed with the ability to do good. For example there was a bill a few years ago that I wrote to affect the red tape for a certain kind of small businesses in the food industry, it sounds so random  (no, it was incredibly helpful, I have a friend who was helped immensely) Well there you go.
So we went through our bills that year and we probably had 50 ideas and we ranked this 21at out of 20 bills we were going to carry, but by some reason we ended up carrying it. And I still get stopped on the street by people saying “You changed my life. I’m a single mother and I wanted to create a baking business and I was never able to do it and there was all this red tape and bureaucracy, but you changed my life”. And then Forbes magazine, did a story about how it created 1,000 new small businesses. But there are also things where you keep fighting and fighting and fighting and you get very depressed by the power that special interest groups have here. There are other things that I’ve tried to do, that I know my colleagues have tried where you get and education very fast on how powerful certain special interest groups are and people. And there’s interest groups up here who feel totally comfortable to threaten you with your reelection. They feel very comfortably to imply very strongly that if you don’t vote a certain way they’re going to affect your future career, and that’s depressing because you like to think that we live in a society where elected officials could feel comfortable to vote their conscience and do what they think is right. You’re always going to be affected, you’re always going to be affected by blocks of vote in your district. You’re always going to be affected by money and power and things like that, but when it gets too profound in one direction, then you have to say “something’s wrong”. And so, I guess what I’m saying is there have been profound opportunities to do good but it’s also depressing sometimes by how many good ideas can get stifled by special interest groups.
K: Do you have any wisdom about your approach on how to find your avenue, for people to make social change? Because that is what I feel compelled to do, and in my last job I felt I wasn’t able to do enough to change policy.
M: The best way is to, if there’s an issue you care about, people will see that. They will see it by your passion, by the tone of your voice and the look in your eye. They will see all of those things, that you care about it. People who care about issues are very powerful spokespeople for them. If you can get other people to join you, to contribute small amounts of money to fund a professional lobbying effort, to contribute small amounts of money to a PAC, to lobby legislators, to give their time. Because time has a value, just like money, to come testify, to write letters, to engage the media; all these things are very, very powerful ways to affect change.  One of the most powerful ways is that there are a lot of newspapers right now that are just dying for content, [yes] and people still read newspapers, and if you can write compelling Op-Eds and submit them to newspapers. You know, I write Op-Eds that aren’t even my issues, in my privy, I write Op-Eds on Federal monetary policy and newspapers sometimes take them because sometimes {they need content}. But that’s a really powerful way to kick-off a movement.
K: You talked about the good opportunities for making measurable and positive change for people through your legislative work, but you also talked about the reality of special interest groups and how they have a paralyzing effect on the legislative process and representing people in a genuine way—What would progress or positive change look like to you (dreaming big), in the way the state legislature functions and serves its citizens?
M: Progress and positive change can best be brought through a more engaged citizenry, participating actively in the legislative process.  Reducing voter apathy and increasing voter turnout is an extremely important first step towards achieving this goal.  Additionally, I have taken strides to allow the public to have a direct impact on the state’s legislative process in an unprecedented manner.  For the second year in a row I have invited the public to draft their own legislation online. Citizens can visit the "Wiki bill's" website, and by using an interface similar to Wikipedia's, they can propose, draft, and edit a bill.  Many people have ideas about what they like and don’t like about their government, so providing them this forum to create legislation and directly impact the process is one of the best ways we can serve citizens as a legislature.
K: Do you feel that most legislative policy is created from a negative and reactionary viewpoint, only looking at the biggest failures and problems in society and fixing those? Or do we have policies that develop from looking at our community's assets, existing strengths and asking how we can utilize those assets, empower them and have them function more efficiently? Should both approaches be used?
M: Legislative policy in California comes from a combination of proactive and reactive viewpoints.  We should be using whatever makes the most sense.  I am a strong proponent of common sense, practical solutions, whether proactive or reactive, that can best benefit our state.  California’s legislative process can be long and drawn out which is frustrating. However, this process is necessary to ensure that bills are thoroughly vetted.  This means that, whether negative and reactive or positive and proactive, we do what is in the best interest of Californians.
K: What influenced your decision to support the Lanterman Coalition's budget position, to increase funding across-the-board for developmental services?
M: It was simply the right thing to do. The system that was previously in place was in crisis and it was time for the legislature to act.  Although the Developmental Services Task Force had been working on budget recommendations, it was unclear if it would be available in time for the budget debate.  I stood with other legislators in asking the Chairs of the Subcommittees on Health and Human Services in both houses to consider a 10 percent increase in the regional center operations and purchase of services budget for developmental services.

May 4, 2015

Serving a Neurodiverse Community with Discordant Views on Autism

A Brief Background on Autism Spectrum Disorders

by K. Yeates, May 3, 2015
Leo Kanner, a child psychiatrist a Johns Hopkins University, first used the term “autism” in 1943 to describe 11 children who displayed a set of similar symptoms: lack of social skills, unusual body movements, and rigid routines. Although some of the children were verbal, all had serous learning challenges and lacked social skills to utilize their speech to communicate well with others.
A year later, in 1944, Hans Asperger; an Austrian pediatrician first described patients with similar symptoms but with proficient language use and without serious learning impairments. Although Asperger syndrome was termed at roughly the same time as autism, it was not widely heard of in the United States in the early 1980s (Ozonoff, Dawson, & McPartland, 2002). The similarities between Asperger’s and autism were striking, but this led to divisive opinions as to whether they part of the same disorder. Asperger’s disorder was added to the DSM-IV (Links to an external site.) in 1994 under the umbrella term of pervasive developmental disorders (PDDs), characterized by impairments spanning all areas of functioning: social reciprocity, communication, and repetitive behaviors and interests (Young & Rodi, 2014). However, The DSM-5 released 2013, disposed of Aspergers and PDD-NOS and replaced those diagnoses with just one category, autism spectrum disorder (ASD) (Young & Rodi, 2014).
What makes these terms and diagnostic criteria relevant to our society is that they no longer apply to a small group of children, like Dr. Kanner first described. ASDs have quickly moved from being the subject of rare curiosity to becoming a mainstay in the areas of education, healthcare, insurance, and mental health policy. In 2000, the US Centers for Disease Control reported that 1 in 150 children had been diagnosed ASD. In just 10 years, the prevalence grew to 1 in 68 children (Centers for Disease Control and Prevention, 2015).
Even for people who don’t have an immediate family member with ASD, developmental disabilities have a wide reaching effect. ASDs affect all racial, ethnic, and socioeconomic groups. And the issues faced by those with autism affect far more than 1 in 68. Recent studies show roughly 1 in 6 children in the United States has some form of a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism (Centers for Disease Control and Prevention, 2015).
For policy makers or individuals who still doubt the relevance of autism, the economic cost on families and for society is undeniable. Individuals with ASD have higher medical costs on average and intensive behavioral interventions for children with ASD average $40,000 to $60,000 per child, per year. The estimated societal costs of caring for children with ASD were surpassed $9 billion in 2011 (Centers for Disease Control and Prevention, 2015).

The Discordant Realities of Living with Autism

The autism spectrum has widened to encompass a large range of characteristics. Those who represent this spectrum may be considered profoundly disabled or only affected to more mild degrees. Additionally, there are many adults who have an incredible range of unique talents that they claim are inextricably tied to their diagnosis of Asperger’s or autism. What used to appear as a rare, severe and one-dimensional disabling condition is now the purview of a diverse and discordant community.
This leads to many unanswered questions that face the future of funding for non-profits, educational services, progressive policy and advocacy. Where do we draw the line between viewing ASD as a gift, difference or disorder? How can we advocate for changes while respecting the diversity of the autism communities? Is it possible to advocate on behalf of specific policy changes or represent an autism group or organization without alienating another group of individuals who are affected by autism at a varying level?
In order to have a glimpse at the range of voices constitute the range of autism perspectives, I have chosen three short videos that show some common realities of life with autism:
  • The first candid perspective from a young man with autism speaking on the problems inherent in much of the autism advocacy work that takes place without the input of autistics. The views he expresses are a growing concern among autism self-advocates and take specific issue with some prominent, national organizations.https://youtu.be/PWnd61C0SgA (Links to an external site.)
  • This second clip shows the perspective is primarily from a mother, but also shows the whole family of a young teen with autism and how his disability affects daily life. https://youtu.be/w_23z9yJAq0 (Links to an external site.)
  • Lastly, this short clip shows a young, female children in the throws of a severe meltdown that left her parents feeling they had no other option to seek help at a hospital emergency room. Although the child doesn’t seem to be communicating in a typical sense, this is likely her best method of communication in this situation.https://youtu.be/-4drTQsSLXg (Links to an external site.)



Current Trends and their Divisive Forces

Rates of autism and the demand for services show no sign of slowing down, which could lead many policy-makers to question the work of the scientific researchers who receive grants from non-profits, the same nonprofits who are already under fire for spending funds on scientific research to investigate autism. Many self-proclaimed autistics see this work as a move to eliminate" or eradicate the core of their identity and therefore undermine their humanity. Conversely, the opportunity of Increase Demand certainly exists. This challenge that faces the services and non-profits working with autism are “The legitimacy and effectiveness challenges” (Salamon, 2012).
Also facing scrutiny for its legitimacy and efficiency. Increasingly stakeholders are asking: what are these large non-profit autism organizations accomplishing and are they even employing people with autism within their organization?
Philosopher Paulo Freire speaks on the extensively on representing groups who are marginalized or oppressed, but he stresses—like the young self-advocate in the first video—the importance of including the views and voices of those with autism, not just well intentioned politicians, parents or allies. Freire states, “One cannot expect positive results from an educational or political action program which fails to respect the particular view of the world held by the people” (Freire, 2000).
Finally, I believe that there is some hope and accord offered by author and autism self-advocate John Elder Robison in his address to Autism Social, Legal, and Ethical Research Special Interest Group (Links to an external site.) at the 2014 International Meeting for Autism Research (IMFAR):
“I don’t believe the question is ‘who’s going to speak for them.’ I believe the question is, ‘when are we going to develop science to let them speak themselves?’ Everyone who lives with autism experiences suffering. You look at me and I look articulate, but I suffer, in some way, every single day. I think that the duty of scientists is to develop tools in this context to relieve and remediate discomfort and suffering. It is NOT to develop something that is called “a cure,” which has the ring of getting rid of us. If we can focus on relieving suffering and maximizing capability, and when we open up a dialogue and recognize that autistic people stand with other significant recognized minorities in America, then we can begin to talk about changing society” (Robinson, 2014).
I believe that both Freire and Robinson share a very crucial idea. We need to enable for all within a community. This dialogue is imperative for the formation of meaningful programs and for successful policy-making. Perhaps we should start by truly listening.

References
Centers for Disease Control and Prevention. ( 2015, February 26). Autism Spectrum Disorder (ASD). Retrieved May 3, 2015, from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/data.html
Freire, P. (2000). Pedagogy of the Oppressed. New York , NY: Bloomsbury Academic.
Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent's guide to Asperger syndrome and high-functioning autism. New York, NY: The Guilford Press.
Robinson, J. E. (2014, May 23). John Robison at IMFAR: On Autism Rights, Ethics, & Priorities. Retrieved May 3, 2015, from Thinking Person's Guide to Autism: http://www.thinkingautismguide.com/2014/05/john-robison-at-imfar-on-autism-rights.html?m=1
Salamon, L. M. (2012). The Resilient Sector: The Future of Nonprofit America. Washington D.C.: Brookings Institution Press.
Young, R. L., & Rodi, M. L. (2014). Redefining autism spectrum disorder using DSM-5: The implications of the proposed DSM-5 criteria for autism spectrum disorders. Journal of Autism and Developmental Disorders , 44.4, 758-765.

March 31, 2015

Let's Rethink Truancy Rather than Compounding the Issue

I don't even own a cat so I can't just, like, take a cute cat photo and post that a blog for y'all. Instead I've got an article and a diatribe on truancy policy. ‪#‎longreads‬:
I'm so frustrated by educators and politicians "cracking down" on truancy. There is already so little flexibility in our public school systems and the approach by our AG's office, and many other legislators is to be tough on this issue like any other crime without addressing any of the actual issues underlying the fundamental problems.
Truancy is not an issue of simple attendance or always caused by a commitment to education on a parents' part. And it makes no sense to penalize parents in areas where there are no transportation services or accommodations. Our local elementary school sends us letters constantly about the importance of "showing up", never actually giving us concrete ideas or encouragement to engage in our children's education. My child also can only be allowed to stay home sick from school if she has a fever or is vomiting. Nothing less is sufficient so we're forced to send them to school not feeling well or get exposed to viruses unnecessarily.
While my child is 6 and therefore legally required to attend school, her education is more than the three hours in the kindergarten classrooms each day. We have other entire programs built into her schedule and she works hard year round at a huge array of goals to augment the classroom setting. Sometimes what is best for her is to have a few days break at a time that's been difficult for her and our developmental pediatrician has recommended reducing demands. We also have gotten calls from her school warning that there have been multiple cases of confirmed whopping cough on her campus, (seems like maybe kids could be kept home when having those infectious symptoms, not just the fever/vomiting criteria). Yet our school district superintendent keeps mailing the same pointless letters on showing up and not missing even ONE hour of school. It's rude, ineffective, punitive and totally misses the point.
Regarding the article below: Obviously, I'm not a resident of Illinois but I find the idea of parents being fined or jailed for truancy to be disgraceful and the proposal to double the punishment for parents of children utilizing special education to be discriminatory (so obviously, the way we can just glance at Indiana's new law and know deep down that's wrong).
Why can't lawmakers and school districts work with families to make sure there is enough done to meet needs of families who struggle to make it to school? Perhaps we needs built in sick time and a longer school year or floating "family days"? Maybe some families are missing school they don't have reliable transportation, perhaps they've got unaddressed behavior or learning issues or maybe their child has a disability or diagnosis not understandable to these administrators and they can listen and work to find a new service, modification or accommodation so the child can access education better.

Stiffer penalties could soon be in store for parents in one state whose children skip school, but the harsher punishment would only apply to those with kids in special...
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