This blog is on topics of interest to early career professionals who work with people with disabilities. Blog contributors have diverse perspectives on leadership, professional development, and success in changing systems to better serve people with disabilities and their families. For more information on Early Career Professionals, check out the website: www.aucd.org/ecp

09 December, 2014

December 8, 2014
A Welcome Journey


Maria Isabel Frangenburg
Diversity and Inclusion Fellow, AUCD

LEND was never part of my “original plan”, that plan that we sit down and craft at some point as we try to neatly engineer the next steps in life. I received an email from a colleague at my volunteer translating job, where she included a link to the program. She said that she thought that it would be “perfect” for me. I’ve never been one to turn down perfection, so I made the pertinent phone calls and a few months later, I was officially a LEND trainee.

 I didn’t see myself as the traditional LEND trainee. My background didn’t include any clinical or health related experience, and I had a hard time fitting my philosophy degree and advertising work history into what I thought LEND was. But they were looking for their first parent trainee, and there, I saw myself. The journey that I encountered was thoroughly unexpected and life changing. Every member of the Virginia LEND faculty was supportive and personally invested in my journey. They were always available, always open to how I saw this experience, and most importantly, responsive to adapting the Virginia LEND experience to the then new Family discipline in a diverse environment. I learned leadership from leaders who engendered it. They taught me that I could make a difference, and the experiential curriculum gave me the tools to go out and get started.

After graduation, I began work at the VA UCEDD as a parent navigator who would provide resources to Latino parents of children with disabilities. As I did the work, I realized that much foundational work in cultural and linguistic competency across the state needed to take place. With the support of the VA UCEDD along with productive relationships with other state agencies, we set to design trainings and an annual conference. Alongside of these efforts, the Virginia LEND invited me to co-teach the Interdisciplinary Teamwork class, as well as to be their clinic coordinator.

These experiences set the stage for my current job at AUCD, where I, along with three other fellows across the US, am embarking on the design of a Diversity Blueprint for the network.  

LEND is a part of every move I make, and a lifetime network that I can always count on. 

02 June, 2014

Writing for Publication (As a Grad Student)

Kate Caldwell, PhD
Recent Graduate in Disability Studies from the University of Illinois at Chicago
Editorial Coordinator for the AAIDD journal Intellectual and Developmental Disabilities

For the past two and half years, I have been both a graduate student in Disability Studies at the University of Illinois Chicago and the Editorial Coordinator for the journal Intellectual and Developmental Disabilities (IDD). This means that often I have students ask for advice on submitting a manuscript to an academic journal.  Submitting a manuscript to a journal can be such an intimidating process, largely because the logistics are often not well explained to grad students.  This post is an effort to shed light on what goes on behind the scenes and de-mystify the publication process a bit.  Hopefully the tips below will be useful to you going forward in your work!
Writing the Manuscript
One thing that we see a lot of when grad students submit manuscripts is that they are formatted like a student paper or thesis, not necessarily an article.  Many assume that translating a student paper into an article means shortening their work.  There is definitely more to it than that, and sometimes even seasoned professors can forget this!  Student papers are student papers and, while they may have fulfilled the requirements of the assignment they were submitted for, they usually don't work for journals and have a difficult time in review.  However, student papers can be a wonderful starting point for developing a journal article.  In doing so you should keep in mind who the audience is, what your argument is, and how to best convey that argument to the audience.  There has been considerable dialogue among qualitative methodologists about “letting the research speak for itself” and the researcher acting as a tool for sharing the voices and perspectives of the research participants.  However, that does not mean that you, as a researcher, don’t have an argument and an important voice in the process.  Sometimes it may take awhile to find the right “voice” or approach for a manuscript, but once you find one that fits, and is representative of what you want to convey about your data, everything else should come together. 
My best tip for writing a manuscript is to look at an article that you liked, one that stayed with you and made you think, “I want to write like that.”  Study that article: look at their outline and how the author structured their argument; look at how they presented their methods, data, and findings; look for their objective, purpose, argument, and the significance of their research; and finally think about what it was about this article that made you like it.  Another approach is to look at the articles that have been published recently in the journal you want to submit to for these factors.  Doing so will give you a good idea of what the editors and reviewers expect in a publishable article.  Also, make sure to read the author instructions and follow the formatting requirements thoroughly (As a bonus, the editorial assistant will love you for this!).
Finding the Right Journal
Choosing the journal you want to submit to can make or break your chances of having a manuscript accepted.  It is essential that your manuscript is a good fit with the journal’s aims and scope as well as the journal’s target audience.  If there is a poor fit, then the Editor may choose to return the manuscript before even putting it through a review.  I’ve had this happen to me several times, particularly with work in areas that are under-researched and exploratory, where there is no clear fit within existing journals.  In those instances, it’s a process of try-try-again and angling the manuscript differently so that it is more explicitly relevant to that journal’s audience.  Another factor that can affect your submission is the journal’s receptivity to graduate student work.  Many journals treat graduate student submissions the same as any other manuscript, utilizing an anonymous (often referred to using ableist language as “blind”) peer-review process.  However, I have encountered a couple of journals that disincentivize graduate students by charging a fee or putting the manuscript through a separate review process that was not completely anonymous.   Definitely check out the journal in advance and if anything is not clear you can always email the Editor to ask a question or two. 
My best advice here is to look at what the journal has published recently in terms of both topic and methodology.  For instance, some journals choose not to publish literature reviews whereas others choose not to publish meta-analyses.  Further, some journals may not have a good history of publishing research that utilizes qualitative approaches such as focus groups or participatory action research.  Or if they have, they may want that information presented in a very specific way.  Looking at what the journal has published recently will help you get an idea for how to present your own work.  If the journal isn’t a good fit, the Editor will let you know right away and it’s important not to interpret this as a rejection of your work.
Submitting Your Manuscript
First and foremost, SUBMIT IT!  I know so many people (friends, colleagues, and people I have met at conferences) who really want to submit their work, but who worry that it is not good enough and so they never submit it in the first place.  It’s never going to be perfect.  Even after an article is published there will be things you want to change, and because we are working in a field that is constantly advancing you should want to! Instead of focusing on what could have been changed or made better in a published piece think of it this way… that just means you’ll have an opportunity to write another article that builds upon your previous work.  That said, you do want to submit the best possible version of your work. 
Conversely, some graduate students make the mistake of “shopping” a manuscript around, wherein they submit an incomplete manuscript to a journal that they don’t want to publish in so that they can get feedback to improve their manuscript for submission to a different journal.  While it may sound savvy, this will actually end up working against you.  The journal is going to approach experts in the field to review your piece.  These may be future colleagues and employers so you want to put your best work forward in case you find yourself in a situation where the work you were talking about with a colleague or in a job interview sounds a lot like an interesting manuscript they reviewed once.  That conversation is going to be a lot trickier if they had a bad impression of that work.  Moreover if a manuscript that is being shopped makes it past quality control and into review, the author likely isn’t going to get the kind of feedback they are looking for.  Reviewers are volunteering their time and when they see a manuscript that is unfinished they will more often than not leave fewer, broader comments to that effect.  However, if you submit the best possible version then they are more likely to give you more specific and constructive criticism in ways that will challenge but inevitably strengthen your manuscript and future work. 
Okay so now comes the hard part… waiting.  On average it will take between 3 to 4 months for a manuscript to go through review, but in some cases it may take up to a year.  What is going on behind the scenes while you’re waiting?   The Editor and editorial staff is contacting potential reviewers and waiting for their response, contacting additional reviewers as needed (e.g. if one has to withdraw at the last second due to an emergency or conflict of interest), following up with reviewers to submit their comments, and then finally the process of making an editorial decision begins.  This last part can vary depending upon the journal.  I once submitted to a journal that convened the entire editorial board to discuss the manuscript.  Including a round of revisions, it took over a year and a half before they ended up rejecting the article, citing that it was their policy not to allow another round of revisions.  We ended up submitting the manuscript to a different journal that was a better fit for the material, but even so that submission took another year to get through review.  So yeah.  Waiting.  Ugh.  The best advice I got there was from my advisor (and a cheesy infomercial), “set it and forget it.”  Submit your manuscript and then move on to the next one.
The Decision, Revisions & Responding to Reviewers
Generally, there are four types of decisions that you will get on a manuscript: accept, accept pending revisions, revise and resubmit (R&R), and do not accept.  No one ever gets their manuscript accepted the first time around and very few ever see an “accept pending revisions.”  The majority of decisions are to “revise and resubmit.”  This is true even for senior researchers so know that you are in good company!  Also, I see a lot of authors (grad students and professors alike) who assume that an R&R is a rejection and never resubmit or submit their manuscript to a different journal.  However, in my experience, it has been worthwhile to make the revisions and resubmit to the same journal.  Be persistent.  Remember that an editor will not tell you to revise and resubmit if they don’t think it is possible to make the changes requested; otherwise the decision would simply have been “do not accept.” There are two kinds of revisions that will be asked for: major or minor revisions.  If your decision is an R&R with minor revisions then you are in a good position!  Major revisions, on the other hand, are always hard and typically require some restructuring.  In one instance, I had to cut down the number of words in a manuscript by half while trying not to lose any content.  That was a challenge.  If you receive an R&R with major revisions and don’t feel it is going to be possible to make the changes requested then consider talking to the editor about your concerns.
With regards to revising - Don’t fight it. Try to make as many of the revisions as possible, and remember that the reviewers are experts in the field.  The Editor has passed along their feedback for a reason.  You may not be able to make all of the suggested changes, and that is okay!  There may be other ways for addressing reviewers’ concerns by presenting, framing, contextualizing, or structuring the information differently.  Moreover, if it sounds like a reviewer just “isn’t getting it” or missed the point completely… they did.  This just means that point needs to be clarified or made more explicit in the manuscript.  Every time that I have responded to reviewer comments there have been one or two points where I had to give a justification for why a change was not made.  Don’t compromise your principles or your research because you feel pressure to respond to a reviewer comment.  Explain instead your well-reasoned justification for not making that change.  For example, I once received a comment from a reviewer whose specialty was not intellectual disability.  This reviewer argued that the AAIDD definition for intellectual disability that I was using was not sufficient and offered their own scale, suggesting that I use the terminology “mental retardation.”  I thanked the reviewer for highlighting the need to clarify the operational definition and took the opportunity to better explain the recent advancements in terminology (See Rosa’s Law).  Finally, I suggested that a more thorough conversation about this topic was worthwhile, but outside the scope of the current research.  It is really important to be polite and to thank the reviewers for volunteering their time to read and respond to the manuscript.  For me this is easier said than done. I have had to learn to read the reviewer comments, step away from the manuscript, vent my frustration, and then re-approach it later when I can be calm and measured in my response.  My best piece of advice here is to draft the response letter and then go through and remove all of the adjectives! Seriously, it helps. 

I sincerely hope that you all find this useful in moving forward with your work.  Graduate students and early career professionals have the potential to serve as a source of innovation in moving the field forward and advancing knowledge in intellectual and developmental disability research by providing new insights and perspectives on contemporary issues.  

19 May, 2014

Inclusion and Acceptance

Elaine Eisenbaum, MSW
2013-2014 AUCD Virtual Trainee


Flash back to 2008 and I'm having lunch at Capitol City Brewing Company with the students and faulty from Virginia Commonwealth University LEND. At the time I was working at L'Arche Greater Washington DC as the Program Director in Arlington, VA and attending the Disability Policy Seminar as part of my professional development. I had an interest in disability policy but I really didn’t know much about the organizations putting on the conference. I went to the conference alone, knowing no one. The tables had state designations and I sat at Virginia’s table. There I met the then Executive Director of the VCU Partnership for People with Disabilities, Fred Orelove, and the VCU LEND students. This group showed genuine interest in getting to know me. They integrated me into their group with ease; including the lunch they invited me to join them at.  Right away I thought, Wow, I wish I had known about the LEND program and the AUCD network when I was in my master’s program. What a great opportunity to learn! But more than that, I was impressed by the warmth and inclusion they showed me. The seed was planted. I think I’d like to work within the AUCD network. If I go back for my PhD, I want to be part of the AUCD network!

Flash forward to 2013 and I'm having déjà vu at the AUCD conference. Once again I find myself at Capitol City Brewing Company, this time with the students and faculty from the Cincinnati LEND and UCEDD. By now I’ve met many people within the network. I've left the DC area and gone back to school to pursue my PhD at the University of Texas at Austin. I’ve secured a traineeship and graduate research assistantship at Texas Center for Disability Studies (TCDS). After a year at TCDS I wanted to get more involved in the greater AUCD network, and when my executive director and mentor approached me about the Virtual Trainee position, I was eager to apply. However, that year I didn't get the position. But I was able to increase my involvement with AUCD the following year by serving as a Trainee Liaison and attending the AUCD conference with the support of my Center and an AUCD trainee scholarship. I applied for the Virtual Trainee position again the next year, and this time, I got it! Although I knew many more people at the 2013 conference than I had during my initial introduction to AUCD at DPS 2008, I was still the only trainee at the conference from my Center. I didn't have a large group to belong to with planned social activities. Yet once again, others embraced me, and the Cincinnati crew invited me to join their group for dinner. These are just two examples of inclusion and kindness shown towards me, but during my time and experiences within the AUCD network, many more small and large gestures of inclusion have been extended my way, increasing my sense of belonging as well as my desire to stay within this AUCD community. I suspect my experiences of inclusion and acceptance at AUCD are not unique, but rather that inclusion of trainees and those who are new is pervasive.

During the course of my term as Virtual Trainee, one of the duties of my position has been to support fellow trainees to make connections within the network, with the goal that they will ultimately want to stay connected to AUCD. AUCD has worked to facilitate this connectedness by creating social media for trainees, trainee listserves, hosting networking events, and working to increase scholarships so that more trainees can attend and meet each other in person at the AUCD conference. AUCD has also been clear in its messaging that trainees are valued network members by creating the Virtual Trainee position, creating the Board Trainee position, having Trainee Liaisons work on projects of importance to the network, and including trainees on the AUCD conference review teams. Andy Imparato recently reinforced this point when addressing trainees at the DPS Trainee Symposium. "Trainees, you are important. You are the future leaders in the disability field. You will change the world."

As trainees looking for a place of future employment, we want to work in an environment where we feel connected, valued and have opportunities to impact positive change. But, just as importantly, if not more so, we want to work in a place where we feel like we belong, where all are fully included. Working towards a more inclusive world begins at the organizational level. It necessitates a complete embracement and celebration of every aspect of diversity within our own network. Not only does this philosophy encourage trainees to stay within the network, but it also allows us, as an organization, to reach our full potential in impacting the world. And I look forward to continuing to be a part of it.


03 February, 2014

Mentors, Networking and Elevator Speeches

Jessiemarie Voigt, MPH
Former LEND Trainee, University of Arizona
Supported Employment Specialist

I spend my days traveling all corners of Louisville to meet clients in day programs and employers in busy offices and warehouses.  I help people with disabilities find and keep employment or in other words, I help quality employers find qualified employees, with disabilities.  I am a supported employment specialist.   Employment does not include job readiness programs, sheltered workshops, day program contracted work, enclave work or any setting in which only people with disabilities work.  It is designed to be in the community and matched to interests and skills.  Clients of my colleagues and I are employed at UPS WorldPort Hub, Best Buy Warehouse, Geek Squad City Headquarters, YMCA, Kentucky Science Center, Jefferson County Public Schools and many more small and mid-size businesses across the state of Kentucky.  

Working has opened endless doors for you and me, and it can do just that for our family, friends, clients, consumers and patients with disabilities.  Income, money management, spouses, friendships, fulfillment, challenge, stress, conflict, resolution, independence and respect can be tied to and gained from employment.  My goal is for employment to be attainable for my clients and for your clients.  I want employers to look for value in spite of recognizing a disability, and I want disability recognized as diversity in the workplace. 

It will not be easy to shift the paradigm.  Being an employment specialist is not easy.  I would guess that your job is not easy either, and that you too have big goals to tackle.  In my 3 1/2 month tenure as an employment specialist, I found that I need help to take on my goals. 

Today I share the advice that was offered to me from a later career professional as I began to tackle my professional goals: 

1) Mentors (a.k.a. Late Career Professionals) DO make a difference:
This can be an informal relationship.  I attended a training generously offered by one of our organization’s board members, Dr. Karl Gretz.  On a break, I voiced that I needed help in making contacts in Louisville. He has since passed along articles, invited me to a networking event, and offered advice to my concerns.  Although it was never called a mentor-mentee relationship, I thank and credit Dr. Karl Gretz of Gretz Consulting group as a mentor and the source of much of the wisdom I pass along today.  He provided tools to meet other professionals and emphasized the importance of doing just that.  

2)   Rock the 30 second introduction:
In graduate school, my eyes opened wide, incredulous, at the suggestion of sharing my elevator speech with a room of strangers.  I pondered the enjoyment my professor received in torturing me to do this and contemplated how to pinpoint myself in one minute.  Now, I finally have a solution.  I created a short and sweet, 1-3 sentence message map on my own terms, before it felt like torture.  My mentor recommended Carmine Gallo’s YouTube instruction on creating a message map and it is awesome!  

Carmine Gallo’s Elevator Speech Instruction in less than 5 minutes:
Find the link HERE

(Note: If you do end up making a message map/elevator speech, I would love to hear about it and share mine with you!)

3)   Visit places where you might meet other professionals
Your home city, town or suburb likely has networking groups that can easily be found over the Internet.  Louisville has more free networking groups than I can reasonably attend.  Find one, and GO.  If you hate it, find another.  Bumping into people and sharing your professional message with others will allow you to glean new ideas for your own work, and also give you the opportunity to share your input into others’ ideas.  You will build a professional foundation that can act as resources when needed or lead to future opportunity.

4)   You do not need the gift of gab to network.
It is not about talking; it is about asking questions and getting to know others.  As a more introverted person, I found, and still often find networking a terrifying experience.  Dr. Gretz advised me to: a) Ask questions, b) Listen MORE than you talk, and c) “Act like you’re getting to know someone as you would on a date.” 
  
If you are still sure your mind will go blank, or alternatively that you will monopolize the room, pre write several questions and make it your mission to get some answers.

5)   Share your new elevator speech in these settings
Now that you have made it to the event, SHARE!  When I was able to articulate my job in 1-3 sentences, people understood my job and observed my passion.  This interested them enough to ask questions and offer ideas about ways to help me in my career!  Free help from experts!  I was floored at how easy it was to get to this point.   

6)   Go to training opportunities:
Attend training opportunities when you can, and even if the material is dull or very familiar, find at least ONE TAKEAWAY.
-Is there a content expert you could talk to that would help a client you work with?
-Is there a tool you could take home and use? 
-Is there a contact you should make to advance your career into a future field?  
-Can you meet someone to carpool with (and get to know) the next day of the conference? 
-Can you share ideas with a ‘neighbor’ in the same field or research interest you had not met before?

7)   Network within your own field:
This is so important, and something I took for granted in the LEND program.  Although it is an interdisciplinary group, we all have a shared passion.  In 3.5 months as an employment specialist, I have gained so much by getting to know employment specialists serving at different agencies.  They have shared their strategies with me, recommended free resources, introduced colleagues, offered advice on tricky cases, and recommended fundraising sources and leads for employers.  I also developed a relationship with Kentucky’s supported employment guru, whom is an invaluable support in every challenge I encounter. 

If you are still skeptical that mentors, networking, and elevator speeches can help you as an early career professional, I submit to you the words of Margaret Mead, “Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."  These tools have led me to meet thoughtful and committed professionals.  I have begun to think of it as my duty to get to know people in my field and other fields to better serve my clients and work toward changing the world! 

11 December, 2013

Decisively Accepting My Mission

Kenya Spear, AS, BS, MS.ED
Literacy Coach, The Milagro Center
Former LEND Trainee at Westchester Institute of Human Development

My beginnings were humble, survival; having adequate food, clothing and shelter were always an effort. After high school, obtaining higher education was not expected.  My family needed me to locate a job and contribute to my upkeep and their preservation. I was obedient, respectful, docile, even, and knew I would do what was expected. 

But I also wanted a profession, not a job. As luck would have it, a local high school had a nursing program. I applied and was accepted. In nursing school, I was dedicated and competent but family responsibilities and burdens; as well as professional training was stressful. After graduating, I changed paths and obtained positions in the corporate world.   

Financially, I was helping my family and regularly buying myself material things but professionally I was unfulfilled. My days, sitting at a desk, answering phones, move papers about, attending meetings, and such was unrewarding, and unimaginative.  Frequently, I was despondent and I pursued professional help.   
In therapy I worked hard and ultimately started learning and recognizing what was important to and special about me.  I realized I had good writing skills, I kept journals, I loved to read, had a wide-ranging record collection, an impressive art collection, I was an excellent swimmer, a decent photography and had traveled considerable.  And I had an eclectic group of friends.

I wanted to attend college. And beyond all odds, I did. I majored in psychology/sociology and took a few education courses as electives. Studying education, methods of teaching, and such inspired me. And with my miscellaneous and eclectic background and experiences, I though I had the qualities to become an excellent teacher.  

I initially taught Social Studies, Common Branches, grades 1-6, which I loved. I was not certified and had no influence as to what and where I would teach. Therefore, I was transferred as needed, and found myself teaching Social Studies in Junior High and High School.  But in a teacher’s newsletter I saw a temporary, middle of the school year, teaching position in an elementary school in a low performing district.

I applied, was interviewed and hired to teach a third grade class. Unbeknown, to me the class was a Special Education class. (I later learned no qualified special education teacher applied for the job and in desperation, I was hired.) The class consisted of 10 boys and 2 girls, who were American Blacks, Hispanic and African. At least two were foster children, three lived with extended family members, almost all presented with health issues; asthma, allergies, all of the students were language delayed, none were reading on grade level and several could not read at all.  

For the first two weeks or so, teaching was touch and go. The students were problematic, the workload grueling, and I had much to learn.  I did not know what an IEP, Individual Education Plan was, and nothing, no course I took in college, had adequately prepared me for the disrupted behavior, running in the hallways and classroom, fighting and lying I encountered.   But, I was not put off! An avid reader and life learner, I started reading books about Pat Mora, Tom Feelings, Zora Neale Hurston, Malcolm X, Rosa Parks and Langston Hughes to the students.

I wanted the students to see themselves, to start learning about their cultural and hopefully develop an interest in reading and language. From my collection I brought in records, jazz, folk music, and such, to help enhance listening skills. And afterwards, I lead discussions, encouraged the students to share their feelings and ideas about what they had heard.

With student assisted relevant bulletin boards, about their neighborhoods, families, friends and playgrounds were created. I included the student’s words, names, ages and photos. Along the way, I taught the students, boys included, how to crochet.  A math lesson became the opportunity to measure flour, salt, and sugar in order to bake cookies. Worry free Journal writing, students were encouraged to write, and they were not penalized for spelling and such, was a daily activity.

Slowly, the students started to trust me and I knew they knew that I respected them. I listened, encouraged, and I did not maligned them. Remarkable, I witnessed a slight decrease in some disrupted behaviors. Students lined up when I asked them to and pushing and shoving dwindled. I rewarded, every progress, with stickers, certificates of merits and encouraging, motivating words and smiles.

My AP, Assistant Principal, gave inspiring suggestions when he visited my classroom. The Principal visited and took notes. After about two months, I was asked to attend a meeting with the Principal and Assistant Principal.  Needless, to say I was terrified.  I wondered what had I done wrong, incorrect, poorly.
But in the meeting, I was stunned to learn that apparently I had done things and was doing things well. And I was offered the opportunity to participate in a special program.  It turned out The District had established a tuition free program to train teachers who were willing to commit to teaching special education.   Principal and Assistant Principal wanted to know if I would participate.  The answer was a firm yes!!!   

And so, with guidance, encouragement, and support, I enrolled in a Master’s Program in Special Education.
I completed the program, became state certified and started teaching special education students.  And I embraced my profession and became clear about my goals and purpose in life.

Gathering and hording things are not important aims for me. Self-improvement, self-awareness and self-control are my primary objectives.  Teaching, communicating, sharing and helping people, persons, especial children, notable children who have and are confronting challenging’s are important to me and my purposes in life. 

But, sometimes, I become despondent, angry even when I recall the emotional, physical, social and educational difficulties, disadvantages and drawbacks that seemed to have been discarded on me, my life and living!  But then I remember the words of Mark Twain “The best way to cheer yourself up is to cheer somebody else up.” And I do just that!!!!






01 November, 2013

7 Reasons You Are Absolutely Required to Educate Policymakers

Rachel Patterson, MPA
AUCD Policy Analyst



You're tired of hearing it.
Washington is "broken". 
Hyper-partisanship. Ugh
We're tired of writing it.

Cory from Boy Meets World waves his arms and screams

But this means it's even more important to get involved.

Here's 7 reasons why:

1. You know disability issues.
You're in training programs, you research and teach about disability issues, you work with people with disabilities, you have disabilities yourselves. You know what's going on.

Sheldon Cooper from Big Bang Theory says

Only you can tell this story.
Kurt tells Rachel
You know what’s working and what’s not working.
Barney on How I Met Your Mother Says


2. They want to hear from you.
Members of Congress care deeply about their constituents. They want to know what’s going on in their states and districts and it’s your job to tell them. Plus, they want to get re-elected.
Call Me Maybe
Capitol Switchboard: (202) 224-3121.

If anyone tells you that Congress only listens to lobbyists and other powerful influences… well….
Vice President Joe Biden says,

3. AUCD is here to help.
Stylist on the Hunger Games  says


4. It's easy!
Set up meeting, send an email, tweet – anything! AUCD’s Action Center links you directly to your members’ phone number, email, and social media. And, as we covered in point #2, they want to hear from you.
Way easier than this.
Haymitch Abernathy tells Katniss
More like this. 
Ron Swanson says


5. Then you get to hold them accountable for what they told you.
Barney says
And even build a relationship where they call you when they have disability questions.
Man looks incredulous and asks


6. You might just change things.
Kurt's Dad on Glee says

And feel awesome…
Robin on How I Met Your Mother does a victory dance

We'll be so proud
Tim Gunn, from Project Runway, says


7. Even if you disagree with your current representatives you should still meet with them, learn about the issues, and educate your neighbors. Then vote for someone else.
President Bartlett says

And then next time someone wants to know about policy, you can be all:

Blane tells Kurt

Convinced? TAKE ACTION!

07 October, 2013

A Parent's Voice

Shannon M. Haworth, MA, QMHP
Behavior Analyst
Virginia LEND graduate 2013

Recently graduating from Virginia-LEND and graduate school does technically make me an early career professional.  I feel more of a “career changer” due to life changing events. I am now a Behavior Analyst with my Masters in Applied Behavior Analysis, but in a former life I was an IT Project manager with a PMP certification.  I recently took my examination to be Board Certified (hoping that I passed!). I am now an early career professional because I wanted to serve families of children with developmental disabilities. My own child has autism and has changed my path.

As a “parent /professional” I have a unique perspective on how to serve families. I feel I can treat maladaptive behaviors of children with autism as a professional, but also understand the parents’ perspective.
My discipline during my time in Virginia-LEND was “Family Trainee.”  I was the parent voice to young professionals in many disciplines. That gave me an opportunity to influence how they perceive families and how they care for them. I would like to continue to be that voice for professionals.

As a professional it is hard when I hear conversations blaming parents or not understanding why they did not implement a treatment at home, or missed an appointment.   Every family is different. Think of families driving on a long road. We are all on the road but going at different speeds. Some parents want to follow through on commitments but are entirely overwhelmed and have not dealt with their grief. Other parents have reached a stage where they are on cruise control and can handle more, and get things done. 

I urge professionals to try to see the parent’s perspective, and meet them where they are. As a Behavior Analyst I often try to shape behavior. You do that by reinforcing successive approximations to the desired behavior.  Reinforce parents for what they are doing right, and encourage them to do the things you feel they need to do at home for their child. For example, if a family has certain activities they need to complete at home for OT and they don’t, encourage them and make the task smaller if possible.

Also, professionals should realize they have stereotypes and to not be ashamed of them. Stereotypes are a way of telling us we need more information and we are ignorant on some level. As professionals we need to be culturally competent and treat all types of people. We need to find commonalities and learn to get past any preconceived notions about families or groups.

Lastly, family centered care is essential. Please include families in the treatment of their child, and honor the “parent’s truth.”  Parents may believe that their child has a certain diagnosis, or is not getting all the services they need. You may feel that their point of view is incorrect, but have the conversation anyway.  Treating a child means treating the whole family.

I hope that I can continue to help other professionals who work with children to empathize with families and build relationships with them. That is what makes a professional not just good, but exceptional!