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 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.

4 comments:

Tricia Snyder on April 9, 2013 at 10:38 AM said...
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Jody Pirtle said...
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Sarah Cole on June 4, 2013 at 12:30 AM said...
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Sarah Cole on June 4, 2013 at 12:32 AM said...
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