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

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!


03 September, 2013

You Went to India? In July?

Emily Johnson, MA
Research and Training Coordinator
Global Autism Project


There is nothing that fully prepares you for leading a team of professionals into the unknown. There is especially nothing that fully prepares you for leading a team of professionals into the unknown in India. In July. (Everyone I know whose from India says, “You went to India? In July??”) Yet, that’s where I found myself this summer. A few short months after I graduated from the LEND program at Cincinnati Children's Hospital/University of Cincinnati, I left my home and flew halfway around the world to Jakarta, Indonesia, to start my new job.

When I finished this past year of graduate school, I accepted a year-long position as the Research and Training Coordinator for a non-governmental organization called the Global Autism Project. My job entails a lot of things, but one of the most exciting is being a team leader for volunteer teams of professionals traveling to our partner sites to provide training in evidence-based practices for autism spectrum disorder. The Global Autism Project has partner sites in India, Indonesia, Kenya, and Peru, so this summer I did a marathon 6 weeks at the Indonesia site followed by the India site. I led two teams of volunteers for 2 weeks each, helping them to provide training to professionals working with kids with autism.

Like I said, there is nothing that fully prepares you to do this kind of work. But thank goodness I had something that mostly prepared me to do this—my LEND training. LEND taught me a lot of things, but the skill that I became most grateful for this summer was the ability to really listen. In LEND, I spent a lot of time learning how to really listen to families. I would think I knew what they needed, but then realized it wasn’t my job to decide what they needed—it was my job to listen to what they needed. So I listened. And then I listened some more. And then I kept listening until I really heard what they needed me to hear.

When working in other countries, this is by far the most important skill. Many people approach work in other countries with a very helper-oriented mindset. We genuinely want to help, and we want to do it by giving what we have, be it supplies, or knowledge, or other things. But in my 5 or so years of doing international work, I’ve learned that sometimes what we give isn’t always what the community needs. Just like with family-centered care, we can only learn what they really need by listening. So I listened a lot, and I taught my teams how to listen. I used the leadership skills I learned in LEND to bring a group of people together to listen to our international partners, and we shaped our training based on the needs of the center. In Indonesia we focused on basics of ABA data collection, and in India we focused on contingency-based classroom management skills. Each partner site is unique in what they need, so we listen first, and THEN provide the training that they ask for.

When I left LEND, I was surprised by how quickly my newly-formed leadership skills catapulted me into so many opportunities. I took a position as a committee chair in my state professional organization, I got offered to write a textbook chapter, and then I took this position at the Global Autism Project. But I don’t think I realized how much LEND had taught me until I was halfway around the world, leading a team of people who were looking to me for directions, and trying not to screw anything up. What I didn’t know at the time was that I had so many inner resources instilled in me as a LEND graduate, that I wasn’t going to screw anything up (nothing that couldn’t be fixed, anyway). Traveling can be really hard on people—traveling AND working AND leading people can be even harder (in case you really wanted to test your LEND skills, you could always try to lead a multidisciplinary team in a country with an average temperature of 100 F and no air conditioning.) They were successful trips. We had hard days, but they were still successful. We accomplished a lot, but I also discovered, at the end of it all, that success isn’t always about accomplishment. Success is listening, success is being a good leader, success is having people trust you enough to invite you back into their country for the next time. Based on what I got from LEND, and the kind of leader I am, I realized I’ll always be successful, even when I don’t succeed. 

01 August, 2013

Power of a Skill: Self-Advocacy

Emily Ladau
AUCD Projects Intern



As a recent recipient of my B.A. in English from Adelphi University in Long Island, New York, I am quite new to the community of early career professionals.  Yet, as an intern at AUCD, I realize every day the power of a skill I have been developing practically since I first learned to talk: self-advocacy.  As a young woman with a physical disability, I must constantly advocate on my own behalf.  In the disability community, self-advocacy is considered one of the most valuable skills necessary to achieve your goals. And while it has always been especially crucial for people with disabilities to master this, I believe that learning to advocate for yourself is a valuable tool that can and should be used by all emerging young professionals.  I have found that the same skill set I have developed to advocate for my rights as a person with a disability in my personal life also happens to benefit me professionally.  The ability to self-advocate can serve you well both inside and outside the workplace as you move forward in your career. 

The key to being a successful self-advocate is to develop your sense of self-confidence and self-worth.  This may sound like advice from your middle school guidance counselor, but it’s true!  Being confident and sure of your abilities will help you convey to others what you are capable of doing.  I used to find myself leaning towards making self-deprecating comments so as not to come across as conceited or pretentious, but I’ve come to realize that as a young person pursuing a career, it is not only acceptable, but also essential to learn how to sell yourself by sharing your major accomplishments.  In my case, doing this allows me to showcase my skill sets and passions to potential employers when networking.  Modesty has its place, but in my experience, the only way to garner any notice when making new connections is to highlight your abilities, interests, and achievements.

Furthermore, once you are employed – even if it is temporary employment, such as an internship – and begin to establish yourself in your career path, having the confidence to advocate for yourself and note your achievements can open many doors for advancement.  Granted, I have learned from many role model self-advocates in the disability community that being a great self-advocate most certainly did not lead any of them straight to a position as a president or director of an organization.  Therefore, though I have big goals, I understand that making progress in my career progress requires an incremental approach. 

As an intern at AUCD, I have advocated for myself by speaking up in meetings, telling my supervisors that I can take on many projects, and demonstrating that I have new ideas to bring to the table.  This has made for a rewarding internship experience, because I feel that when you truly believe in yourself, it shows, and others will come to believe in your abilities as well.  For instance, I take pride in the writing and communication skills I gained by working as a writing tutor and majoring in English.  I have thus made it a point to speak up specifically about these skills, which has provided me with chances to work on many great projects.  That being said, a good self-advocate always delivers on their promises.  If you advertise that you have a particular skill or ability and are subsequently assigned tasks that require these skills, make sure your final product is one you’re proud of sharing!

Of course, there is a flip side to self-advocacy.  While advocating for what you can do is important, it is equally imperative to know how to advocate for yourself when you need help.  I mean this in two ways.  First, should you have any kind of disability that necessitates accommodations, it is crucial to speak up for yourself to receive those accommodations in the workplace.  The need for proper accommodations should never be swept under the rug, because getting help is a huge part of achieving career success.  Even if you do not identify as having a disability, be willing to advocate for yourself if you need help in the workplace!  Asking for assistance when you truly need it is respectable and acceptable regardless of ability!

The second facet of asking for help is advocating for your needs by requesting to be taught a new skill.  I often do this in order to capitalize on a project as a learning opportunity.  This does not mean I’m less self-confident by admitting that I do not know something, but rather it shows that I am honest and willing to engage in new things.  I’ve been taught that this type of self-advocacy is mutually beneficial: I gain knowledge that I can use to accomplish future goals, but I also get to use this new knowledge to complete more assignments for my job.  One such example of this occurred when one of my coworkers asked me to update information on a website publishing program.  Having never used it before, I spoke up and explained that although I was unfamiliar with the system, I wanted to learn so I could help.  Now, I have an understanding of how to use it and I can take part in website related projects.  In this way, self-advocacy can create career stepping-stones, allowing you to expand your skill sets and build up your resume.

Above all else, take pride in yourself, and embrace chances to be a self-advocate.  You never know when advocating for yourself may lead you to an incredible opportunity.  Had it not been for the amazing people in the disability community who have taught me the value of self-advocacy in all aspects of life, and those who have modeled how to be an effective self-advocate (thanks, Mom!), I never would have reached where I am today with a budding career in disability rights activism.  I’m incredibly grateful to have spent my summer advocating not just for myself, but also for the disability community that I’m so proud to be a part of.  Whether you are also part of the disability community, or you are a supportive ally working to change the lives of people with disabilities, self-advocacy is truly a gateway to limitless career opportunities.



01 July, 2013

Sharing Her Story: A Virtual Trainee Reflects back on a Year with AUCD

Stephanie Weber, PsyD
AUCD Virtual Trainee 2012-2013


Serving as the 2012-2013 AUCD Virtual Trainee has been an amazing experience and I thank you deeply for this opportunity and the support to make the year so successful. This position is very valuable to the professional development of not only the Virtual Trainee but other Trainees who see the work of the VT and know the AUCD Network is a welcoming place to share ideas and build skills for leadership in the field of developmental disabilities.

There were so many highlights from this experience that it is hard to touch on only a few. In our LEND we have a heavy focus on the MCH Leadership Competencies, so I have framed my experience through that lens; when I reflect on my experiences as Virtual Trainee in terms of the MCH Competencies, I have definitely improved my skills in all 12 areas! In the area of Self, I have learned a great deal about the AUCD Network and increased my MCH Knowledge Base. It was wonderful to learn more about the Network connections directly from AUCD Staff when I visited the office in August, which set the foundation for projects throughout the year. My participation on the “AUCD and Me” webinar in the fall was beneficial to learn more about the Network and how to conduct a webinar! Trainees approached me at the Annual Conference and the Disability Policy Seminar to comment on how much that webinar helped frame up their understanding of the large Network of AUCD. Additionally, I was grateful to participate in the Board Meeting at the Annual Conference to gain a better understanding of the outstanding work being done in the committees and across the Centers. By organizing discussion posts for the AUCD and MCH Trainee Listserves, Facebook page, and Twitter, I was able to connect Trainees by sharing knowledge and resources used in Centers all over the country. Trainees seemed to find a great deal of value in learning from each other and having their questions answered through these social media outlets.

In the MCH area of Others, I have found so many opportunities to improve my skills in Communication by participating as the VT. Prior to the Annual Conference, I created a brief survey asking Trainees to share the areas of their work for which they feel most passionate. There was an overwhelming response and Trainees showed their diversity in their responses. They were excited to see the finished product, a “word cloud” of the responses, at the conference. In addition, with the support of AUCD Staff Rebecca and Crystal, I was able to lead a Trainee Networking Event which was hugely successful. Trainees provided feedback that they would have liked it to last even longer! The Trainee Liaisons also provided an exceptional opportunity to improve communication skills through email and conference calls. This was the first year for holding quarterly conference calls and they were very well received by TLs. Through these calls, TLs provided their feedback and requested to hold a Trainee-led webinar, which was carried out in March. With assistance from Dr. Tamar Heller, two Trainees were able to participate on a webinar offering information on international disability work. This provided a glimpse of the Trainee’s leadership skills that others may have never received without the work and planning of the VT with the TLs.

At year’s end, the vast majority of TL’s talked excitedly about wanting to remain connected with the AUCD network and each other, working as young professionals to support one another and incoming trainees while keeping their connection to the AUCD Network. Helping this next generation of trainees grow their awareness and connection to the Network is something I’m especially proud of during my tenure!  I was very fortunate this year to be able to work closely with Jody Pirtle, the new Board Trainee, brainstorming new ways to get and keep trainees excited about being a part of the incredible AUCD network. Having an experienced mentor/former VT to work with allowed me to not spin my wheels and instead be more efficient by learning from and building on her experience. Maintaining continuity from year to year is difficult with a typical one year trainee schedule, so this was extremely valuable to me. To have the trainee and young professional network recognized with a seat on the Board has also made a very positive difference in how trainees are recognized within the network, and trainees and TLs on calls and at conferences and events both made comments about and seemed to embrace that recognition by working harder to be strong AUCD members and future Network leaders.
           
Policy and Advocacy has been an area of the Wider Community Competencies that has made a lasting impression of my professional development directly because of activities from this year as VT. I had a front row seat to the excitement of the 2012 Presidential Election by being an Ohio citizen, and this made the National Forum on Disability Issues in Columbus, Ohio, an extremely exciting experience. I was grateful to attend and relay information on the presented issues back to the Trainee network. Additionally, at the AUCD Conference, given the timing of the vote on the Convention on the Rights of Persons with Disabilities (CRPD), I led a large group of Trainees to Capitol Hill to educate legislators on the issue. What an experience! This was an impromptu trip based overwhelming number of Trainees who indicated they wanted to do whatever they could to support ratification of CRPD. This was an amazing opportunity to put our leadership skills to work! It also provided many Trainees, including myself, the confidence to meet with legislators at Hill Day at the Disability Policy Seminar. This was yet another wonderful week of experiences to help shape my passion for advocacy and knowledge of the issues and ways to best influence policy development.


Overall, I could have never imagined I would have gained so much in terms of my leadership skills in just under one year. I look forward to working with the newly named VT on understanding the role so he/she can hit the ground running for 2013-2014. Again, I am grateful to the AUCD Board and Staff for the continued support and recognition of the importance of the VT position, both at the individual and Network level. Thank you!

03 June, 2013

How High-Fives Help and Other Tips to Improve Multidisciplinary Teamwork

Jonathan Jenkins, MA - Predoctoral Psychology Intern at Cambridge Health Alliance/Harvard Medical School and former LEND program graduate.


As I reflect upon what to write for this blog entry, I am reminded about the immense amount of advice that I have received along the road towards completing my doctoral degree this August.  Upon that journey, one of my main areas of professional growth was learning how to find my own voice within groups and finding out where I fit when working together with various professionals to serve the medical and social challenges of families in need.  Through being mindful of my own area of growth, I have been able to incorporate several new skills that have assisted me in becoming more valuable to the families I serve when partnering with other professionals and more excited about these opportunities for collaboration and professional growth.

Charisma is Queen/King.  My father gave me great advice before I attended my first ever job interview for a position with a nonprofit focused on character enrichment for children.  When asking him what I should do at the interview, he reminded me that my resume/qualifications made me attractive for the position but that the true test of my worth to the company was my personality.  During that conversation, he spoke about how important it was for me to be that guy who they could count on to not only be able to handle that “3am-worst-case-scenario” because of my professional knowledge, but that my personality and disposition could actually make the “3am-worst-case-scenario” less of a crazy ordeal for the staff as a whole.  The ability of a team member to provide serenity during times of chaos or the ability of that person to galvanize others into action is paramount.  In the social service field this is particularly important given the many crises that organizations often face, whether it is in the lives of our individual patients/clients or with the actual structure or daily operations of the company itself.  Being known as the organization’s anchor, you will become indispensible and someone who will
be exposed to various opportunities for professional growth.  Being able to provide calm during the storm also allows people to work more productively and that could assist in the goal being reached quickly and with less unnecessary strife and conflict.

High-Five and High-Five Often.  Be a cheerleader, everyone likes a high-five.  When you see someone doing something positive at the organization, whether it is personal or related to work, make sure you let that person know that you recognize his or her awesome accomplishment.  Although we are all adults and would like to say that we have given up childish things like consistent praise, I will be the first to admit that I feel fantastic after someone gives me even the slightest bit of credit for a job well done.  This demonstrates to me that a) this person is interested/invested in my success, b) that successful behavior gets noticed by her/him or the organization as a whole, and c) that I will be more aware of what that person does in the future so that I can return the high-five to them when they accomplish a goal. 

The ability to be a cheerleader on your team helps foster camaraderie and an appreciation of success.  This positive atmosphere not only helps the organization but it also can translate to creating an improved environment for the patients/clients served.  If the population served is able to tell that those within the organization are a cohesive group and are excited about coming into work then that may encourage clients/patients to join in the positive atmosphere and become more involved in their own care.  This type of camaraderie also helps the organization gain more access to the community as a whole.  With patients/clients seeing the members of the organization as approachable, fun-loving, and warm they may be more willing to have the organization gain access to particularly “shy” areas of the community that maybe were previously nervous about seeking medical or social services from the organization.

Work with the People Whom Posses Talents You Don’t.  The best way to learn skills to progress professionally is to diversify your skill set and that cannot be accomplished by working only with likeminded people.  By limiting yourself to working only with similarly talented people, there is little opportunity to be inspired to dream differently about how to accomplish tasks and to creatively problem-solve.  Additionally, working with the same people and solving the same tasks may become overly repetitive and could lead to boredom or burnout, both outcomes being ones that can diminish your productivity and your ability to serve the community with a high degree of energy.  Through branching out and allowing ourselves to be humbled by others’ skills, we present ourselves with the opportunity to be spurred into growing in new and different ways by igniting our own competitive juices.  Again, as high-achieving individuals, we also recognize and appreciate how Darwin spoke about failure being a catalyst for evolution in animals and this is no different when speaking about one’s professional growth. 

These situations also provide great networking opportunities where new connections can be forged and further collaboration can occur for later projects.  While working with this new partner you may discover that her/his talents greatly dwarf anything you could accomplish in this particular area.  That realization is not a sign of defeat or surrender but recognition that to successfully accomplish the task it might be beneficial for you to step to the side and let this individual’s given talents shine.  Not only will that then allow the task to be accomplished correctly, but also you have just provided someone the opportunity to show their worth, which will pay dividends later when they may encounter a problem where you could be seen as a resource.

Know the Bounds of Your Competence.  There are a lot more things that I cannot do then that I can do and I am okay with that because I can do some things pretty darn well.  Just as one should have confidence in what they can do, they similarly need confidence in what they cannot do.  In my own life, it has often been those times when I took on a task way above my competence that I failed and failed miserably.  This is not to say that people should not challenge themselves, but that they should make sure that they are qualified to partake in each particular challenge.  Not being mindful of the potential skills necessary for particular tasks could have devastating consequences for the individual, the organization, and the community served.  As high-achievers, we must all remember that it is okay to not be all things for all people.  Through knowing how to do several things really well, we are providing a great gift to our communities while still allowing for professional challenge and growth.

It is Okay to say “No.”  “No.”  Now you say it…
I of all people have trouble saying “no” so I sympathize with others like me who have trouble with this simple two-letter word.  When I say “no,” I am worried about two things: disappointing the person who asked for my help and missing out on an awesome experience.  Where saying “yes” too much gets me into trouble is when I become overworked and have my hands in too many projects to be able to do any of these projects successfully.  I am doing nobody any favors by just being present if I cannot utilize my talents to the extent necessary to accomplish the task.  What has been helpful for me in this arena is to provide a thoughtful explanation as for why I cannot participate in the project.  This releases me from the guilt of declining their invitation or call for help while also giving them the opportunity to develop other ways in which I can be helpful.  There is no harm in being both strategic and realistic about your involvement in particular tasks because your success not only impacts your own professional identity but also the service delivery of the organization.


The 19th century American poet Ralph Waldo Emerson once said “nothing great was ever achieved without enthusiasm,” and this is no different in our field.  By approaching opportunities for collaboration with tenacity and excitement, we can enliven our professional communities and spark both tremendous change in society and great professional growth in our lives.

09 April, 2013

Just Some "Food for Thought"


I am not a regular “blogger” (I don’t write or read them daily) so when I was thinking about this blog entry and trying to figure out what to write about, a lot of possibilities came to my mind. Because this was a pretty wide-open assignment I decided to share a few thoughts, lessons learned and ideas about moving forward in your careers. Just some “food for thought.”

I was a LEND fellow in Indiana over 25 years ago when I was a MSW student. At the time I saw it as an opportunity to pay for part of my Master’s education. I didn’t realize (until a decade later) the value of the experience and how it would shape my future through opportunities.  When I decided to go back to graduate school again, having been a LEND fellow, got me in the door at the UCEDD.  Today, I am the Director of the NIDRR funded Research and Training Center on Community Living, the Associate Director of our LEND and the Training Director of our UCEDD.   My work focuses on policy and advocacy related issues and I am hopeful that the research I do influences both. My research focuses on long-term services and support for children and adults with IDD and also the direct support workers who deliver these services.  Here are some things I think about as I reflect on my career, and what I try to convey to students, Fellows and staff.

AUCD Programs (LENDs/UCEDDs/IDDRCs) Matter – You may not realize it now but I am pretty confident that because of your LEND and UCEDD experiences, doors and opportunities will open for you.  If I were guessing, they are unfolding now even while you are a trainee. Opportunities are abundant; try to avoid indulging in too many too quickly so that you are unable to focus on the most important ones (like finishing your degree). MORE opportunities will come after you are done, this is guaranteed.

Humans Are Human – As your career evolves and you take on new roles and have new opportunities you will come across all kinds of people. The good thing is that all humans are simply that, they are humans. Don't be intimidated and remember that assertiveness is always a good thing - everyone with whom you will work over the years has flaws and they have strengths.  Like you, they are all very bright people or they wouldn't have the jobs they have.  Just remember you are one of them and their jobs likely depend on you too.

Humbleness and Humility Are Essential – No matter who you are or your experience or expertise, you cannot ever know everything there is to know about anything, no matter how much you know. There will always be people who know things you do not know and there will always
be perspectives equally or more important then yours that you need to learn. Be humble and give others credit they deserve.

Everything Is Chaotic and Complex and Our Systems Only Make This Worse  – If there is anything I have learned, there is nothing in the field of long term services and supports for people with intellectual and developmental disabilities and their families that is not complex and wrought with chaos or uncertainty. There are many perspectives regarding all ideas and all issues. I would caution you not to approach any issue with absolute certainty or thinking there is a right or wrong answer to a problem or issue; because, as sure as you do, a reasonable exception will arise.  Every child, every family is different and our systems of support simply are not geared toward this differentness. We all just have to learn to embrace the chaos and the complexity it brings.

Technology Has and Should Continue to Open Your Mind to Possibility – When I was a graduate student I vividly remember writing my first document on a computer (this was actually at my LEND clinic site at Riley Child Development Center).  I remember so clearly being excited at how much time this was going to save me. A couple of decades later just think about what technology can do. Last week I challenged one of our LEND faculty when she was talking about her niece and stated that driving was one of her dreams but that she was never going to be able to drive because of her intellectual disability and related safety concerns.  I am not so sure about this. My new car parks itself, talks to me about everything and provides me with all kinds of helpful alerts.  There are prototype cars now that are being tested and driven by people who are blind. I just cannot help but think if someone who is unable to see can drive today, then why can’t we figure out a way for someone who has an intellectual disability or cognitive limitation to drive safely in the future?  I am pretty convinced this is possible. I have always been and will continue to be an early adopter of technology mostly because it creates efficiencies but also because it opens doors to different thinking and possibilities of all kinds.

Policy Matters - Embrace your leadership role in policy whether you like policy or - it
guides and directs nearly everything you do. Be involved just because you should be.  Really, no matter what you cannot avoid the effects of policy on your work. Today I saw a letter written by our Governor to CMS asking to add intensive early behavioral intervention to our state Medicaid plan; if approved this will changes hundreds of children’s lives. Tomorrow I have to provide a funding projection and contingency plan based on the sequestration; this will affect our trainees and our staff.  I cannot think of a single day that goes by where some policy isn’t affecting my work or the lives of people with disabilities and their families. Get involved, embrace it.

You Really Are Not The Expert.  Stay Grounded. I rarely talk about what keeps me grounded. There are a few things: family, humbling experiences, partnerships and knowing that no matter how bad it seems, it could always be worse.  For the past 16 years my 39-year-old brother-in-law and Uncle to my young children has lived with my family. We bought a home that had a separate apartment in it so we have our own space and he has his. His life has not been easy; he’s fallen through many cracks in the system; most days he is happy and has a good life and on others he is extremely unhappy. One thing I do know is that I do not know what it is like to have lived his life. He is the expert on his life.  I also know that the many psychiatrists, psychologists, special educators, behavior specialists, case managers and social workers who have worked with him and us have no idea what it is like to have lived his life and they have absolutely a tiny fraction of the expertise I do about him. Yet many of them have stood in unhelpful and unnecessary judgment about him and about our family. So living with a person with an intellectual disability and being his guardian and advocate helps to keep me grounded.  My work also helps.  Our projects and our research is almost always done in collaboration with organizations, agencies and whenever possible people with intellectual disabilities and their families. Having strong partnerships and relationships with the community is essential to remaining grounded. Lastly the opportunities I have had over the past several years to learn from and work with disability professionals and family members in Zambia keeps me flatly grounded. What I saw and experienced in Zambia and what the Zambian people were able to accomplish with so little resource is awe inspiring. With no money you see micro enterprises employing people with disabilities, organizations have figured out how to be self-sustaining because there is no government funding, special education teachers work for little to no pay, Physios (kind of a combined PT/OT in this country) create mobility devises out of trash materials, etc… I don’t mean to glorify the life of people with disabilities in Zambia or the services there; but I do know they make the absolute most out of the limited resources they have and we waste so much in this country t makes no sense. This too keeps me grounded.

Remember Who Really Does the Work - Lastly and perhaps most importantly, remember who does the actual hands on support and implementation of services and supports that you design, prescribe or recommend. It is not you. It is not others in your profession whether you are an MD, psychologist, educator, OT, PT etc … The people who do the hands on day to day work are family caregivers and paid direct support professionals.  Our system is completely dependent on these individuals but we don’t have programs like LENDs and UCEDDs to provide training, support mentoring and education for direct support professionals and family caregivers. Direct support professionals are paid non-livable wages and have little access to benefits such as paid time off, retirement or affordable health care. This needs to change and your voice and actions can make this change happen. Notice these workers and caregivers, respond to action alerts related to wages and other supports, take the extra time to teach and educate them about how to implement treatments or interventions and thank them for the work they do each and every day.

13 March, 2013

On Becoming More Interested than Afraid


I love “aha!” moments. It is the greatest feeling to finally “get” something. I have known for some time that I wanted to write this blog about my experiences with policy and advocacy within my LEND setting, but until very recently, I could not fully capture my reflections. I attended a workshop last weekend, and the leader ended the session with the quote, “Be more interested than afraid.” That is when it hit me. “Aha!” This quote completely summed up my experience for expanding my knowledge and skills in the area of policy and advocacy, and became the impetus for this blog. I used to be quite intimidated of the actual process of calling or emailing legislators’ office, and the thought of speaking to them in person scared me to death. Even though I am greatly passionate about my work with children with developmental disabilities, I had little knowledge and even less skill in how to integrate this into the policy and advocacy realm.

During my first year of traineeship at Cincinnati Children’s Hospital, I set goals for fellowship, research, community outreach, clinical skills… it felt like I had a goal for every word I uttered, it seemed.  But policy and advocacy was an area in which I was unsure of where to even begin. This Maternal Child Health (MCH) Competency area was clearly outlined, but I had no structured experience advocating for individuals with disabilities. Initially, I didn’t really get that my informal career experiences constituted advocacy, such as gently letting managed care agencies know that developmental disabilities are not “cured” in six sessions just because that is all they want to cover financially. I have advocated for my clients to receive the appropriate levels of care for their needs or for people to discontinue their use of the ever hurtful “R-word.” Though, when I sat down to write my LEND goals, I drew a blank for developing a measurable goal for policy and advocacy. Little did I know then, that “policy and advocacy” are scary words for Trainees; in fact, it’s an area that many trainees might choose to avoid. Luckily for me, my LEND program in Cincinnati places great emphasis on this area, leaving me to grapple with what my own goals might be for policy and advocacy development. As any good behaviorist, I turned to the data.

AUCD’s Early Career Professionals Self- Assessment Tool proved to be quite helpful to me for creating goals that were focused and feasible. In my first year, I was able to build basic knowledge from our LEND didactic sessions which piqued my interest and triggered me to ask more questions and read more about policy and advocacy efforts in the disability field. My LEND program did a great job of presenting the information to me at a basic level—I learned so much without feeling bad about my lack of formal knowledge. In fact, it helped me realize how many skills I already had. Then, I discovered that an invaluable experience to expand my policy and advocacy skills was to better understand advocacy from a historical context. So I read more and more. Then, election time rolled around—an exciting time in Cincinnati, Ohio. Moved by the intensity and excitement of the environment in Ohio, I couldn’t help but seek out information on each party’s political stances on issues impacting people with disabilities.  The more I saw in the media led me to be further engrossed in the importance of the 2012 election. By this time, I was hooked.

As this year’s Virtual Trainee, it was so exciting to attend the National Forum on Disability Issues in Columbus, Ohio, in the fall. It was one more opportunity to hear the issues and better understand the impact we can have as advocates. During that time, I watched as much media coverage as I could. Meet the Press became part of my weekend routine.

The election came and went and two short weeks after, I found myself in a position where I had to face my fears of advocating (and even speaking!) to legislators head-on. The vote to ratify the United Nations Treaty, the Convention on the Rights of Persons with Disabilities (CRPD) was set to occur while the AUCD Annual Conference was being held in Washington, DC. It was clear that this was going to be a close vote and that there was risk that there would not be enough votes to ratify. The buzz was all over the AUCD Conference. One of the Trainee events that I planned to lead was scheduled during a time when folks planned to go to the Hill. One of the AUCD Staff members approached me with the idea to replace the Trainee event with this real-life advocacy experience… and the rest was history—instead of leading a Trainee meeting, I became in charge of getting trainees to the Hill!! In an instant, I felt like a formal “advocate.”

Gulp…

Inside, I was terrified.

But outwardly, I appeared calm and ready to face this challenge (I think…). I was tasked with helping Trainees not only get to the Hill in a city I had not been to since my sixth grade field trip, but to also find their legislators and make an argument for ratification of CRPD (Anyone who’s ever tracked down a legislator knows this is easier said than done).  I followed the lead of self-advocates and soon my fear changed into conviction to compel legislators to understand the importance of the USA’s ratification of the CRPD. Our group of Ohio Trainees entered our Senator’s office in a large number. Once the Legislative Aide entered the room, I immediately spoke up. I provided her with information about the CRPD and encouraged her to speak with the Senator. Then, another Trainee spoke up. Then another and another. We all told our stories. The Legislative Aide, who entered the room telling us she only had a “couple minutes” to speak with us, ended up stepping closer and closer and listening more intently as each Trainee said their part. So many stories filled the air; even she couldn’t resist the allure. At the end, we thanked her for her time and all left the office feeling extremely energized. When we act as advocates, we don’t always know how it will turn out. Standing there, invigorated, we didn’t yet know then that the Senator would opt out of the vote and that CRPD would not be ratified. But it was far from a “failure,” in my mind. Personally, my fear of the advocacy process dissipated. I had my policy/advocacy “Aha!” moment. And somehow, overnight, I had become the leader I never imagined I could be. My experience and my fear helped me to understand what it’s like to be a new Trainee and hear the words “policy and advocacy” as if they were spoken in a foreign language. It also helped me understand how being interested trumps being afraid, and that knowledge and expertise are not hard and fast prerequisites to be a good advocate. All it takes is passion and an ounce of courage. And this helps me not only to be a good advocate, but to be a good leader to other Trainees.

My hope is that the story of my advocacy development can help other Trainees and Early Career Professionals push past apprehension and know they can also find confidence to speak up. No expert starts out as an expert—and neither did I, but who know what the future will bring. You never know when YOU might be faced with a similar opportunity!

In conclusion, I encourage others to follow some simple steps to building policy and advocacy skills:

1) Get some data. Either through the ECP Self-Assessment Tool, your program’s curriculum, or just by asking someone who may have more experience than you, gather some data so you can set realistic goals for yourself.

2) Read some. Then read some more. Start with AUCD’s Legislative News In-Brief. Follow the links. Add favorite websites to your homepage. Read about different issues and the stances of various disability organizations. Take in as much information as you can.

3) Show interest in opportunities. Ask questions. Find out when your state may hold an advocacy day. Become involved with any organizations advocacy efforts starting by joining listserves or networking with other leaders. And of course, as Dr. Elizabeth Rider explained to me, you can go a long way in many aspects of your career if you “become more interested than afraid.” 

01 February, 2013

Of Opportunities, Risks, and Feelings


In life, we are presented with many opportunities, even if we are not always aware of them as such. Sometimes, opportunities are short-term activities or projects that lead us for a little while in one direction. Other times, these opportunities are long-term commitments and determine where we go and end up in life. Sometimes, opportunities present themselves when we are waiting for them, and other times, they are serendipitous and appear out of the blue. Depending on where we are in our career and life trajectory, opportunities can be true choices (do I take this opportunity or not) or the only lifeline to hold onto (I need a job, and this is the opportunity I have; therefore, I will take it). When we are desperate for change, we may jump on any opportunity that comes along.  I have learned along the way to trust my instincts and not to take an opportunity if it doesn’t feel “right.” I once passed up a seemingly good opportunity.  This didn’t necessarily look like the best rational decision. I had to ask myself: “Why didn’t you take this job offer when you don’t have a stable job?” My decision did not earn approval of colleagues and mentors who said, “This was the third job opportunity you didn’t take.” Friends would ask, “Didn’t you want to work in that city?” However, I am still glad I trusted my instincts. There seems to be an “inner radar”, something inside of us that makes us react in such a way that we “feel” if something is right or not, will work out or not. If you have a feeling about something, my advice is to explore this feeling and make the decision that feels right to you. I have rarely been wrong about decisions I’ve made based on my feelings, but I have been wrong about some decisions that I’ve made that were based on sound rationale alone.

The greatest opportunity with the highest risk I have taken in my life was to come from Germany to the United States to go to graduate school for a Masters program in Human Development. I didn’t really know what to expect and little did I know that I would end up getting my PhD, getting married here and establishing my family life and career in the United States. I had lived in the U.S. before for a year as a nanny, but coming back to go to grad school and living and learning on my own when I came back was very different. The beginning was hard. Reading scholarly articles in a different language and getting used to a different academic setting in a different culture was not easy. I had so much to learn about the disabilities field in the U.S., the different service system, the different health care system, etc., that it seemed overwhelming at times. But I also met wonderful friends and colleagues and started my career at the Center for Disabilities Studies (CDS) at the University of Delaware. I never once regretted having made the decision. It had felt right when I decided to go to the U.S., and it still felt right when I struggled through (and also very much enjoyed) my first year as a graduate student. This decision, made in large part on a feeling, was one of the best decisions I have ever made, and it exposed me to many more opportunities than I would ever have imagined in my wildest dreams.

While I was still working on my dissertation and needed a part-time job, I was presented with three opportunities. One was to help with a national training effort for professionals in the disabilities field, the other one was doing some data analysis, and the third one was to work on a survey measuring the health status of adults and children with disabilities in Delaware. Which one was the right one for me? All three were great opportunities, so I weighed the pros and cons. I was hesitant about taking the job doing the surveys, but it still felt right. I picked that one.  This job later allowed me to write a successful grant that secured my fulltime position at CDS.

While I was finishing my dissertation, I researched jobs and applied to positions in academia that I thought of as good opportunities for me. I had always thought I would work as a professor at a University. I was invited to interview for a few of those positions.  It became clear early on that some of those positions were not right for me. But there were other interviews that went well, and the positions were offered to me. There was one position in particular where everything seemed to be falling into place. The job seemed good; the potential colleagues seemed nice; the location was okay; the offered compensation was very reasonable; and my husband was on board with the move. However, something didn’t feel right. I didn’t take that job. Would it have worked out? Could I have had a great career there and could I have been happy there? I will never know. However, I never regretted not having taken that position.

A year and a half ago, while in the midst of working on various federal and state grants with my wonderful colleagues at CDS, still very much establishing my career as the Health Unit Director at the UCEDD, I received the weekly AUCD Announcements email. I skimmed through the content and as always, took a quick peek at the job postings, not because I was looking for a job but because I was curious about what positions were open at the moment in the field. There was a posting for the Associate Director at another UCEDD. I clicked on it because it said Cincinnati Children’s Hospital Medical Center. Since my interests are in health disparities people with disabilities experience and health care transition of youth with disabilities, I felt it was worth a look. As I read through the job description, it felt like someone had written a job specifically for me. I went home from work that night and showed the job posting to my husband without saying a word. After he read through it he stated precisely what I felt: “This position was written for you. You cannot not apply for this.” I agreed, and I applied. It was not ideal timing. I hadn’t planned on getting a new job. I was pregnant with my second child. I went on a job interview eight weeks after giving birth. But the position felt right. The interview felt right. The people felt right. The city even felt right. I took the job, and it has been good for me. It was incredibly hard leaving CDS and my colleagues and mentors. I was very sad leaving them, my friends, Delaware and the East Coast. Yet, it felt right and still does.

What’s the point of me sharing all of these pieces of my life with you? Make use of the opportunities that present themselves to you. Also, learn to listen to and trust your inner voice. Say “yes” if it feels right, even if it seems risky or is difficult. Think it through and explore your feelings if your inner voice says “no.” You may not always have the luxury to say no to an opportunity, but if you realize something is not right for you, seek out other opportunities until something feels right. I believe that we do a much better job at work and in life if things feel right and we are happy with the decisions we have made. 

10 January, 2013

Visiting Scholar Protocol (VSP): Piloting a Guide for Trainee Exchange within the AUCD Network


For those of us who have been inspired through our experience with a LEND or a UCEDD, exploring the AUCD network is an exciting proposition. As a second-year trainee, I knew that my affiliation with the AUCD was a valuable resource. I began researching the AUCD to identify programs that I might want to work with in the future. I was astonished by the breadth and diversity of the national network. The adventurer in me immediately conjured visions of trekking from site to site to see first-hand what people were doing in these different centers.

So I pitched the idea of developing a visiting scholar program to my Training Director, Dr. Stephen Hooper at the Carolina Institute on Developmental Disabilities (CIDD), and I proposed that I pilot the program with a visit of my own. We discussed where I would like to visit and, with that, things were rolling. Dr. Hooper reached out to Dr. Nathan Blum, the LEND Director at the Children’s Hospital of Philadelphia (CHOP). I developed a proposal and experiential evaluation to submit to the AUCD, CIDD, and CHOP leadership teams, highlighting the value that a visiting scholar program could bring to the network.

Enter the 2011-2012 Virtual Trainee, Jody Pirtle. Dr. Hooper shared my proposal with her at the LEND Director’s meeting. Jody, a LEND trainee at the Arizona LEND, was in the process of completing an externship in Seattle, and during her visit had connected with the Center on Human Development and Disability at the University of Washington.  With Jody’s input on her Visiting Scholar experience and perspective on the national network, we worked together to expand the proposal to include a procedural outline, and the title “Pilot AUCD Visiting Scholar Protocol” was finally born.

With the protocol in place, it was time for a pilot visit. One of the reasons I chose to visit CHOP was that it serves a diverse population in an urban area. I was eager to see how LEND might differ in a place like Philadelphia compared to my home center in North Carolina. My week at CHOP exposed me to a different model of LEND, as well as a whole new arena of services for people with developmental disabilities. In addition to gaining a deeper appreciation for my field, I observed strategies and programs that I will incorporate into my professional practice.

My visit to CHOP exceeded my expectations and I am more convinced than ever that trainees and professionals who are invested in the AUCD network will benefit from visiting a different LEND Program or UCEDD. Whether you pick up a clinical tool that you incorporate into your own practice, observe a program you would like to replicate, or make a professional connection with a colleague, the opportunity to grow through a visiting scholar experience is invaluable.

The process of developing the VSP was an important learning experience in ways that I had not even anticipated. It reminded me that there is always room for new ideas, even in a large organization like the AUCD, and that the leadership values we espouse in AUCD really can help us turn ideas into reality.


The VSP

The Visiting Scholar Protocol and details of the pilot visit were presented at the 2012 AUCD Conference. The VSP is also available on the AUCD website at http://www.aucd.org/template/news.cfm?news_id=8438&id=17.  It is my hope that many others will take advantage of this opportunity and visit other programs themselves.  If you do, please share your experience and feedback so we can continue to refine the Pilot VSP and evaluate its overall impact as it is implemented across the network.