Gentle Corrections

While the disability movement has a long and rich history, many families who find themselves raising a child with a disability often have no clue about it. Families learn their child has a diagnosis from a doctor or evaluator, or they notice that their child is missing developmental milestones over time. Others may refer a family to a program, or suggest they contact their local school district for supports and services.

What is the History of the Disability Movement?

Over time, families learn about the laws and policies that affect what supports and services might be available to their child and family. They may begin to research their child's specific disability or join support groups.This quest for support and services does not always mean that families are connected to groups that can educate them about the history of the disability movement. They may not learn about Justin Dart or Ed Roberts, they might never encounter Norman Kunc. They may not learn that before Geraldo Rivera was famous for getting hit with a chair by a skinhead, he had exposed New York State's approach to people with disabilities by filming the horrible conditions at Willowbrook. Thus families may not realize that people with disabilities, their families and the professionals who support them, have worked together to change how disabilities are viewed in our culture. Families might not know about the importance of using People First Language or using a strength-based approach to supporting people with disabilities.

How do we inform others about the Disability Movement?

It is important that family leaders and professionals share information about the history of the disability movement. Using anniversary dates or linking current activities to past activities can be helpful to insuring that families learn about the history of the disability movement. There are many wonderful YouTube videos which show the movement's activities to end the prevalence of institutions.

What Do I Do if I See Someone Using Non-People-First Language?

The first caveat is that it is never a good idea to call someone out for saying they have an Autistic son, or that their Uncle Bob is mentally ill. You'll only manage to embarrass them, and they will end up being defensive. Instead, modelling is the best first route. Mention that you have a wonderful daughter who loves to paint, is very physically active and has Down syndrome. When you see articles written by journalists, sending them a quick note thanking them for their article and ask that they use people first language or refrain from stating that a person is wheelchair bound, but rather that that person uses a wheelchair for mobility. And always share links to good references on the topic like Kathy Snow's Disability is Natural website. 

Provide Guidance

We've talked about the importance of helping families to be aware of and understand their privacy rights under the law, and how to use the available privacy controls of the different social media sites.

Got a Template?

There's good news, you don't have to reinvent the wheel. Great content is already available! You can edit that content to your liking so that you can address your audience. The NICHCY Social Media Policy is a good place to start when developing content to explain to families how they can safeguard the privacy of themselves and their children. NICHCY recognizes one of the most important facets of using web 2.0 to support and inform--share content you've developed, reshare good content that someone else has created (with a citation or attribution) and when necessary make some slight changes to fit your audience! In fact, they even have a great little toolkit called "Steal These Strategies" . On that page they encourage folks to adapt their social media policy, they have examples of Facebook and Twitter posts and they share their dissemination plan with readers. The cost? They simply ask that you share your great strategies with them! (Which is something we've been doing for some time now!).  This member of Congress has a nice social media policy, that explains that she wants to have an opportunity to hear from all of her constituents, that email is what constituents should use if they are looking for an answer, and then she gives some warnings that she will not tolerate  bullying, intimidation, or harassment on her page.

Do I Really Have to Teach People How to Use the 'net?

Unfortunately, dear reader, yes you do! Not everyone understands the subtle communication rules. Some users, simply jump in and start sharing without realizing that there are different levels of sharing. For instance, not everyone realizes that when they post to Facebook they can control (to some extent--but not completely), who see's their posts by clicking on the icon in the share box on the lower righthand side, this allows them to set whether they want a post shared with everyone by clicking on the little world icon, or you can reveal the choices, to decide if you want to share with friends except acquaintances, Only Me, Custom, etc., 

However, and this is an important point, once you've shared something on the internet, even if you've limited who has access, you no longer have control over what happens to what you've shared. Even the gurus of social media sometimes encounter problems with this. Last December, Randy Zuckerberg, sister of that Zuckerberg, posted a picture that she thought was only going to be seen by her close friends. What happened next could happen to anyone:One of her friends, saw the photo and re-shared it, then someone else re-shared and tweeted it--probably because they had added the twitter app to their Facebook page. What happened next could only happen to someone famous: a public temper tantrum. When Randy used twitter to chastise the person who tweeted the post, tech gurus everywhere laughed.They pointed out, correctly, that Facebook has a history of changing privacy settings without warning, that they often revert settings to a "default" or public setting without asking or warning users who have spent time setting their privacy controls. And finally, they reminded Randy that once it's out there it is out there.

What Other Tips Do Users Need?

Many users still need simple reminders that it is not a good idea to post their full birthdate, address or days when their home will be unoccupied on social media sites.  We've talked about these types of posts before here.  Which is why I think it is important to have a social media policy, that way folks aren't surprised when you hide or remove their posts on your page.

Recording Studio

I'm putting the finishing touches on a webinar series.The text is almost done, we've got photos--though we're thinking we want to get our "own" photos rather than use stock photos. And now it is time to add some audio. 

Engaging Webinars Need Engaging Audio

Good audio is important for an asynchronous Webinar. It needs to be clear, crisp and  engaging. I think I've got the latter down pat, but how to get clear and crisp without going to a recording studio? Have you looked at how much a recording studio costs?  $50--$75 per hour to use the equipment, well we don't have the budget for that! So I started looking into where to purchase some recording equipment. But again, that seemed too expensive too! It could easily set me back hundreds dollars. 

A quick search on some of my favorite sites and I had some ideas. I did a search on the Articulate e-Learning Heroes blog and saw a thread on making your own recording studio. 

Good Audio Needn't Break the Bank

Thanks to some ingenuity I have created the smallest recording studio ever! Using a pop-up hamper and some egg crate foam that a friend had on hand I was able to fashion a recording box. I did have to work to insure that the pieces fit in snugly so that no sound escaped or entered the box, but careful cutting and shaping and my box was ready! I found a Samson Meteorite microphone on sale and the sound is great! If you're looking for me, I'm probably in my recording studio, with my headset on, hoping that the dog doesn't bark!

Privacy Protections

These days most families of young children with disabilities are using social media to connect with one another. It is important that family leaders and the professionals who provide services and supports to families have discussions about the pros and cons of social media. In fact, it is essential that technical assistance programs get involved in social media and provide families with assistance on how to protect their privacy.

FERPA

Every child who benefits from publicly-funded education services is covered by FERPA or the Federal Education Rights and Privacy Act. FERPA limits who can share information and what information they can share about a child and/or family receiving services funded with federal education dollars. Thus children enrolled in early intervention or IDEA (Individuals with Disabilities Education Act) Part C or birth to three programs are covered by FERPA. Additionally, Parent Training and Information centers and Technical Assistance centers which receive funding under Part D of IDEA have to follow FERPA. 

What About Privacy Settings?

Every social media site, whether Facebook, YouTube, Google+, Twitter, Tumblr, Instagram, Vimeo or LinkedIn has its own privacy settings. These settings change over time too!  It is important to help families to figure out how to find and use the privacy controls on different sites.      Facebook, for instance, allows users to designate their Facebook "Friends" as close or acquaintances. In addition, users can decide whether to share their posts with only their friends, or to share posts publicly.  

What happens in Vegas, stays on Facebook, Flickr...

It is important to remind families that once they have shared something on a site, they no longer have control over who see's what they have shared or who can re-share their post, picture or video. Anyone can grab a screenshot, download or forward their information.  And in this day and age, most folks won't simply forward, but they may add their own comments or opinions.  

So, you want me to stay off the internet?

No!  Social media can be an incredible avenue for supporting and informing families with young children with disabilities. It can also create movements for system change.  However, it is important that families understand that they do have rights, and that there are ways to minimize what gets shared and with whom.  Finally, it is essential that we remind families that they are sharing on behalf of someone else.  A minor child.  As that child grows up it is important that families have regular check-ins with their child and discuss how much and with whom information is shared on the internet.  

Webinars

I have used a few different webinar hosting services. GoToMeeting, Adobe Connect, Elluminate and  Blackboard Collaborate. Each has it's own little quirks. For instance, I must use Mozilla Firefox if I'm presenting using Adobe Connect.  While Blackboard Collaborate runs much better using Google Chrome.

Getting Ready

A good Webinar requires great content. It does need to be both visually and orally interesting. For the last few years I have been either creating my own images or purchasing stock photos--though this can get expensive!  I do like to find stock photos that I can use for more than one presentation. The latest versions of most of the webinar hosting sites have gotten hip to the fact that it is nice for the presenter to be able to see their notes during their presentation--now if only Microsoft can do the same for regular Powerpoint presentations--rather than forcing every presenter to print out a copy of their presentation!

Is That a Belt AND Suspenders You Are Wearing?

Technology is not always reliable. It's true!  And one doesn't want to be standing in front of 200 people with their pants around their ankles. I generally have two computers up and ready to go--so that I can switch from one to the other if something crazy happens. I run a 5G internet network in my home--which means my WiFi can handle  running 3 computers, Netflix and a PS3  game all at the same time. However, I probably need to use my Ethernet cable if I want to present a YouTube video during a webinar with 50 participants. 

Practice, Practice and Then Practice Some More

I do multiple run throughs with my presentations. My assistant sits with a copy of my notes page, and listens while I do my practice sessions. She makes notes for me one areas, where I might get questions from the audience, or where I might not be expressing myself clearly. I also take advantage of run throughs with the webinar hosting services. When you don't use the same webinar platform for every presentation, it is important to do a quick overview, run the tests to insure that the computer being used for the presentation (and the extra computer) have the current version of Java and any add-ons from the webinar platform.

Team Based Early Intervention

I've been invited to share my perspectives on Team Based Early Intervention Services. This is an opportunity for me to share my passion for Early Intervention and my excitement about this momentous change in the way these services are provided in my state. I have already shared some of this information via YouTube with our state's Parent Training and Information Center.

Supporting families is important work. It is important that professionals who support families meet families where they are at and assume confidence and competence. It is also essential that families have the opportunity to participate in a voluntary family-directed assessment which allows them to identify their concerns, priorities and resources and enables them to develop functional, family-centered and meaningful outcomes for their child and family.

It is critical that professionals who support families are aware of current evidence-based research which demonstrates that there are ways to assist families.  That if we are to incorporate new skills into our repertoire we must have an introduction or illustration, practice and then have an opportunity to evaluate and reflect on our efforts. Carl Dunst, and his team at the Orelena Hawks Puckett Institute, has done considerable research on how to empower parents and support their confidence and capacity, as they care for their child with an infant and toddler with a disability.  

Using Team Based Services that encourage providers to work as a team, rather than a series of individuals, is the first step. The next step is to provide professional development that help professionals to strengthen parent capacity as part of early intervention.

Want to Learn More?

Carl Dunst Research Scientist, Orelena Hawks Puckett Institute, NC. http://www.puckett.org/  The Institute Centers include, Center for Evidence-Based Practices www.evidencebasedpractices.org, 

Center for Excellence in Early Childhood Education www.ceecenc.org, 

Center for Innovative and Promising Practices www.innovativepractices.org, 

Center for Improving Community Linkages www.communitylinkages.org, 

Center for Practical Evaluation www.practicalevaluation.org, 

Center for Dissemination and Utilization www.utlization.info. http://leadership-2012.events.tadnet.org/uploads/879/download

Dunst, C.J., Trivette, C.M., & Hamby, D.W. (2010). Meta-analysis of the effectiveness of four adult learning methods and strategies. International Journal of Continuing Education and Lifelong Learning, 3(1), 91-112.

Dunst, C. J., and; Trivette, C. M. (2009). Capacity-building family systems intervention practices. Journal of Family Social Work, 12(2), 119-143.

Swanson, J., Raab, M., & Dunst, C.J. (2011). Strengthening family capacity to provide young children everyday natural learning opportunities. Journal of Early Childhood Research, 9(1), 66-80.

Dunst, C.J., and; Trivette, C.M. (2009). Meta-analytic structural equation modeling of the influences of family-centered care on parent and child psychological health. International Journal of Pediatrics, 2009, 1-9.

Word to the wise

I am a self-professed social media diva. I enjoy the ability to share information, to support others and to connect via social media. However, I also make ample use of my privacy settings. On my personal blog, I don't use my children's real names, and instead use fictional nicknames. I also assist others to increase their social media presence. On a recent webinar I was talking about some of the potential pitfalls of social media use and realized that I didn't have any pictorial examples.  So last night I went searching for some examples quickly found a half-dozen Facebook bloopers. 

As you can see I removed any personal information and blurred the photos to protect the innocent. The top one is just hilarious. The poster provides their name, the name of the main guest, the date, time and location and shares the post with EVERYONE--that little globe means anyone can see what has been posted to Facebook  And then there is the description!  This is a no, no for obvious reasons. There are a number of ways to avoid this problem. The original poster could have created a closed group, or a group private message or they could have created an event that required folks to private message the organizer for the location details. 

This one was found on a state department of health page. For some unknown reason State Department of Health pages are rife with these kinds of posts, or worse.  I've seen people post their phone numbers and Social Security #'s looking for a lost Medicaid card--a quick trip to their profile provides their address and birth date and a criminal has all they need to steal their identity! What surprised me was that this state page, and a few others I have found, respond to the posters using the newsfeed. It would be wise for this page, and others experiencing this type of problem, to periodically post a reminder to readers that they should use email or the private message function to share personal questions or concerns.  Additionally, the administrator should remove any posts that provide personal information.

This one is courtesy of a friend. The post was shared only with this friends friends, but that could still be a lot of people. As you can see my friend let everyone know that they were in transit and would be abroad over a holiday weekend. Again, here's where that private message function would be a better bet. Of course, this was how I found out that my friend would be away for the weekend, but I wondered how many other people learned the same thing?  

Have any Facebook No no's to share?